Therapy interventions for children with neurodisabilities: a qualitative scoping study

Occupational therapy

The objective of occupational therapy with children with neurodisability is to provide practical support to enable them to overcome any barriers that prevent them from doing the activities (occupations) that matter to them. ‘Occupation’ refers to practical and purposeful activities that allow people to live independently and have a sense of identity. This could be essential day-to-day tasks, such as self-care, learning or leisure. Occupational therapists use the following techniques:

• advising on alternative techniques to achieve a desired occupation

• making changes to the child’s home or school environment

• providing equipment.

The early history of occupational therapy is located in a response to the need to rehabilitate people recovering from tuberculosis who had been subject to extended periods of bed rest. The idea of graded engagement in activities emerged with the view to support and enable patients to return to employment once they were fully recovered. In responding to the need to rehabilitate soldiers returning from the first world war, the discipline took further significant steps forward, with national training courses and professional colleges established in the 1930s across the UK. These colleges merged in the 1970s, forming the Royal College of Occupational Therapists (RCOT).

Physiotherapy

For children with neurodisability, the objective of physiotherapy is to promote, develop or restore physical movement and strength and the ability of the child to perform functional activities in their daily lives. A further objective is to reduce pain. Physiotherapists treat or manage movement and body structure/function impairments or disorders through:

• tailored exercises/physical activity

• manual therapy

• education and advice.

Physiotherapy’s origins can be traced back to Sweden and the sport of gymnastics. The Royal Central Institute of Gymnastics was established in Stockholm in 1813. [The Swedish word for physiotherapist (physical therapist) is ‘sjukgymnast’ = ‘sick-gymnast’.] In 1887, physiotherapists were officially recognised and other countries soon followed suit. In 1894, four nurses in Great Britain formed the Chartered Society of Physiotherapy (CSP), and this remains the profession’s national body. The need to rehabilitate individuals with polio and soldiers returning from the first world war served to promote and develop the profession during the first half of the 20th century.

Speech and language therapy

For children with neurodisability, speech and language therapy addresses difficulties with communication or with eating, drinking and swallowing. To address these difficulties, speech and language therapists can work in a number of ways:

• providing education and advice

• developing and supporting the implementation of programmes to help to develop communication and/or the management of eating and drinking problems

• providing feeding/drinking equipment

• providing communication aids and devices.

Speech and language therapy began to emerge as a distinct discipline in the late 1800s and early 1900s. A national professional body (the College of Speech and Language Therapy) was formed in 1945; again, the recovery and rehabilitation needs of soldiers returning from a world war drove developments within the profession. The college became the Royal College of Speech and Language Therapists (RCSLT) in 1995.

Deviation from the proposed design

Three changes were implemented during the early stages of fieldwork as it became clear that planned methods of data collection and choice of stakeholder group were not appropriate. The changes implemented were as follows.

• The method used to consult with community paediatricians and paediatric neurologists was changed from a survey to an interview. Early into fieldwork it became clear that the topics under investigation were complex and nuanced and it was important that representatives of this particular participant group had the opportunity to contribute in the same way as other participant groups. Thus, the decision was made to change the design to individual interview, and to reduce the proposed sample size.

• Early in the project we discovered that undergraduate qualifications in physiotherapy, occupational therapy, and speech and language therapy are generic, that is, not specific to particular age groups or conditions. Therefore, we decided that it would not be fruitful to pursue training placement supervisors as a key participant group. We did, however, record participants’ involvement in training and supervision of new trainees, and explored their views on general training curricula when appropriate.

• Finally, following careful discussion within the team, we added a further ‘miscellaneous’ stakeholder group to the sample. This was in response to emerging findings regarding the importance of the perspectives of managers of children’s community health services, educationalists and private practitioners.

Stage 1: recruitment

The first stage of recruitment comprised desk-based research to identify individual interview participants. This involved searches of the NIHR funding database and high-impact therapy journals for academic clinicians and researchers currently (or recently) active in the field of therapy interventions. At the same time, the professional bodies for the different therapies were approached, via the leads of their respective paediatric and/or specialist neurodisability divisions, to each nominate representatives who could provide a ‘national’ overview of their profession at a research and a practice level. The research team then used a snowballing method, whereby existing recruits were asked for suggestions of other relevant people to include in the study from among their colleagues and professional networks. This iterative recruitment process continued until, from initial analyses and discussions within the research team, data saturation on key or critical themes had been achieved.

All individual interview participants were sent an e-mail invitation to take part in the study. This e-mail introduced the research, the nature of the interview and the topics for exploration. A study information sheet was attached. If no response was received, a member of the research team followed this up by telephone or a further e-mail. Arrangements were then made with those who responded positively for a suitable date and time to conduct the interview. Finally, a confirmation e-mail was sent, to which was attached an additional information sheet setting out the scope of the interview and giving final details about the interview. For those taking part in a telephone interview, also attached to the confirmation e-mail was a consent form outlining the protocols of the interview so that participants could familiarise themselves with these before giving their recorded verbal consent at the beginning of the interview. The three people who were interviewed in person gave written consent before the interview took place.

Stage 2: recruitment to focus groups

In the second stage of recruitment, we sought groups of frontline practitioners, parents, and children and young people to take part in focus group discussions. Recruitment methods varied according to the group in question.

Practitioner groups were recruited through direct representations to the lead practitioners and heads of therapy services we had recruited to individual interviews, or by securing a workshop slot at forthcoming professional conferences. In the case of the former, a member of the research team liaised with a ‘site co-ordinator’ to make arrangements for the meeting. This included sending the co-ordinator an information sheet with details about the study to forward to all those taking part. This sheet also explained that, at the start of the meeting, participants would be asked to give their written consent to take part in the study. In the case of the latter, when recruitment took place on the day of a conference, participants were given both a study information sheet and a consent form to sign at the beginning of the focus group ‘workshop’. All practitioner focus group participants were also asked to complete a brief pro forma regarding their professional backgrounds. Those attending focus groups were offered a personalised certificate of attendance to include in their career portfolios.

In the case of parents and children and young people, we aimed to recruit pre-existing groups in the belief both that this would be more time efficient and that pre-existing groups can move more quickly onto the particular task or discussion and, within the context of a single data collection event, are therefore more likely to yield high-quality data. For parents, we were able to use an established parent group co-ordinated by our own research unit. The study topic was introduced as an agenda item and discussed accordingly at a regular meeting. We then approached several condition-specific voluntary organisations for potential parent groups as well as local groups of the National Network of Parent Carer Forums (www.nnpcf.org.uk). For children and young people, we took a similar route and made representations to sports teams, youth and social clubs and school/university groups, a national voluntary umbrella organisation that represents disabled children and their families, and, via colleagues, existing young people’s research advisory groups. A flier was designed and distributed for this purpose. A ‘thank-you’ shopping voucher (worth £20 for parents and £10–15 for children and young people) was used.

When groups agreed to participate, a member of the research team liaised with the group co-ordinator to arrange a venue, date and time for the meeting and to request that they distribute study information sheets on behalf of the research team. Participants were asked to sign a consent form at the start of the meeting.

Individual interviews: sample

Ninety-three per cent of those invited to participate in an interview accepted the invitation. Of those who did not, one was unable to take part because they were abroad when fieldwork was taking place; one (who had recently changed jobs) failed to respond to our invitation; and one declined to take part as they felt that others would be more suitable. Table 3 displays the role, or post, of the professionals who took part in individual interviews.

Some of those recruited were at the forefront of research on childhood neurodisability. Areas of research interest were diverse, encompassing a range of specific interventions and approaches within physiotherapy, occupational therapy and speech and language therapy, participation outcomes and tools of outcome measurement. Similarly, clinical expertise covered a range of health conditions associated with childhood neurodisability and significant motor impairment, but primarily neuromuscular and skeletal movement disorders and oromotor and communication disorders.

Academic researchers and clinical academics were based in universities and specialist research institutes, in NHS hospital and community trusts and in specialist treatment and rehabilitation centres serving the NHS. As well as leading their own research and managing under- and postgraduate teaching programmes or large clinical caseloads, many had additional roles and responsibilities. Within their own organisations these included managing research strategy, building research capacity and capability, providing clinical and student supervision, and positions as heads of service and professional leads. Externally they included providing strategic leadership via active membership of networks such as the British Academy of Childhood Disability; the European Academy of Childhood Disability; NHS clinical governance networks and independent clinical advisory bodies; and organisations such as Disability Matters. A few had been members of guidance development groups for NICE.

Individual interview participants were drawn from across the disciplines of physiotherapy, occupational therapy and speech and language therapy, and from paediatric medicine (Table 4). Of those recruited who had a therapy background, all were members of their national professional body. Within these organisations, some were members of specialist sections providing professional direction and guidance to their members, such as the Specialist Section Children, Young People and Families of the RCOT and the Association of Paediatric Chartered Physiotherapists within the CSP. Of those who were members of the RCSLT, some were voluntary specialist advisors in their field of expertise and/or members of local Clinical Excellence Networks that meet regularly to share and develop common interests and expertise. In the same way, some of the paediatricians recruited held voluntary roles within the Royal College of Paediatrics and Child Health, such as on the Specialist Advisory Committee for Neurodisability.

As was our aim, there was also representation in the interview sample from across the country as defined by the four broad areas of NHS England’s regional teams (Table 5). The largest group, from the North of England, was made up of nine people from the north-east and three from the north-west. Representatives from RCOT, CSP and RCSLT worked countrywide, as did two of the private practitioners.

Practitioner focus groups: sample

Forty-four therapists took part in one of six focus groups. Over half of these were physiotherapists, the smallest therapy profession represented among those interviewed individually. Most worked for the NHS in the community, predominantly in the north of England. Overall, the therapies they represented, and the organisation, type of setting and locations in which they were based, are reported in Table 6.

The practitioners had wide-ranging experience within physiotherapy, occupational therapy and speech and language therapy. The mean number of years that practitioners had been qualified was 14.2 years (median 11 years). Most were employed in band 6 or 7 posts. Over 60% reported some previous experience of research, although this varied: investigator, involvement in delivering a programme under evaluation, research within undergraduate/postgraduate studies, service audit and/or membership of research discussion forums. These characteristics of the sample are reported in Table 7.

The participants’ caseloads were also diverse in the type of neurological conditions covered, but often their patients had multiple impairments. Box 2 lists the main neurodisabilities represented in the sample’s caseloads.

Parent focus groups: sample

In total, four focus groups were conducted with 26 parents. Of these parents, 20 were mothers, five were fathers and one was a grandfather (Table 8).

Parents were recruited locally from parent-carer forums and our unit’s parent consultation group, and at a weekend-long event held by a condition-specific children’s charity and attended by parents of preschool-aged children from across the country (Table 9).

Within these four parent focus groups, 28 children and young people (15 boys, 13 girls) were represented. There was some variation in age (Table 10).

The health conditions represented by these groups were various and, again, included children with multiple complex needs. The conditions reported by parents are listed in Box 3. It should be noted that, as would be expected for this population, many children had more than one diagnosis, including some degree of learning disability and/or autism and/or sensory impairment.

Challenges of recruitment

Whereas recruitment of the individual interview participants was straightforward, recruitment of the focus group participants proved more difficult. These challenges of recruitment are reported separately for the focus groups with practitioners, parents, and children and young people.

The interview topic guides

The content and focus of the interviews and focus groups differed across the stakeholder groups in accordance with the rationale for recruiting them to the study.

Semistructured topic guides of key themes and subthemes to cover were developed for the individual and group interviews. Table 11 reports on the broad themes covered in the different stakeholder topic guides. (See Appendix 4 for exemplar topic guides.)

Two group exercises were used during the focus groups to facilitate discussion. In larger groups, subgroups were created to work on these tasks. The first was to rank, in order of priority, factors that influenced or informed decision-making about the management of a case. Participants were given a set of cards, each describing one factor. Once they had discussed and agreed a ranking order, they were asked to affix the cards to a mounting board in order of most to least important (Figure 1). The boards were then displayed and discussed among the whole group.

FIGURE 1.

Example of output from focus group ranking exercise.

The second exercise involved participants completing a worksheet about their priorities for research. The worksheet was divided into three sections for this purpose: research about specific interventions, research about particular groups of children (e.g. diagnosis, need, age) and research about the way therapy is organised and delivered. Participants were advised that they did not have to complete all of the sections. Again, the responses were shared and discussed among the group.

Fieldwork

Fieldwork took place between August and December 2016 and was shared by the three members of the research team. Most of the individual interviews were conducted over the telephone, but three were carried out face to face. Except for two instances when focus groups were convened via a national meeting with participants attending from across the country (one practitioner group and one parent group), the group interviews took place in the localities of the participants. The groups were facilitated by one or two researchers. Interviews lasted approximately 1 hour and, with permission, were digitally recorded.

Data analysis

Audio-recordings of the interviews and focus groups were used to create detailed summaries, using a template derived from the headings and subheadings of the relevant topic guide. These summaries included verbatim quotations. The position of verbatim quotations on the audio-recording (in terms of minutes and seconds) was noted.

The research team met regularly throughout the data collection period to reflect on a priori and emerging topics and issues. Once all interview/focus group summaries were complete, the team met again on three separate occasions to discuss and develop, through consensus, ‘mind maps’ of the themes and subthemes covered in the data relevant to the research questions.

These maps were then modified to create a structure into which analytical writings, summarising findings on each theme, could be organised. These formed the basis of the project report. Drafts of the findings sections of the project report were shared and reviewed by all members of the research team, and final versions were agreed.

Verbatim quotations are used extensively throughout the report to illustrate points made in the text and to ensure that the voices of study participants are directly presented. For professional study participants, each individual participant or focus group is identified by a unique code (A1–X2; C1–H1 focus group participant). The use of this coding system allows the reader to evaluate the use of quotations from across the breadth of the sample. To ensure anonymity, we do not provide details of the characteristics of individuals quoted. When appropriate, in the preceding text, we do specify individuals’ profession or other relevant information.

The traditional model

Across all of these settings, the traditional model is that physiotherapy, speech and language therapy and occupational therapy services work as ‘unitherapy’ teams, with assessment and intervention delivery occurring separately, or in isolation, from other types of therapy interventions a child may be receiving. Physical barriers were reported as acting to prevent even informal modes of integrated working:

We are often still based in separate buildings by profession, or separate offices. Right down to what desk you sit at. A huge amount of clinician time and effort goes into trying to mitigate the negative impact of that.

L1

Although not necessarily regarded as a problematic model for children with a short-term need for a specific therapy, difficulties with this model with respect to children with complex long-term needs were identified across all study participant groups. It had the potential to lead to different or conflicting priorities in terms of the purpose or focus of therapy interventions and the perceived objectives.

Alternative models

In addition to the traditional model of service organisation and provision described above, study participants reported other models. These were typically presented as ‘atypical’ or ‘ground-breaking’ and were observed across all levels of care: tertiary, secondary and community services. They included the following.

Factors driving changes in service organisation

Three main factors emerged from interviewees’ accounts as appearing to drive these changes.

1. A policy driver: the Children and Families Act (2014)19 – which demands joint working across health, education and social care, a single, overall assessment of need, and co-ordination and integration of services – was identified as prompting reviews of the way therapy services are organised.

2. Participation outcomes and goals-focused approaches: the shift to regarding participation as a key outcome for therapy interventions, and the accompanying move to goals-focused approaches to assessment and intervention, emerged as a key driver to changing the way therapy services were organised and delivered. (We report this in more detail in Chapter 4.) Interviewees described how the achievement of a goal will require the inputs and interventions from all, or two, of the therapies as well as from other professionals.

3. The need/desire for greater efficiency: reduced resources, coupled with high demand, were reported to have led to alternative approaches being sought. Reconfigurations of service models in order to reduce wait times, prevent duplication both within assessment processes and in the delivery of interventions, and make best use of therapists’ skills and expertise were all cited as reasons for seeking to change models of service organisation and delivery.

Interviewees who had been involved in restructuring or reorganising therapy provision typically described this as a difficult process. Creating multitherapy teams that were truly integrated was challenging and, often, ‘work in progress’.

The World Health Organization’s International Classification of Functioning, Disability and Health

Before moving on to describe each aspect of ‘overall therapy approach’ in turn, it is useful to offer a brief overview of the WHO’s ICF, published in 2002. This conceptual model was widely referred to in our interviews. It was clear that it not only offers a language and framework by which therapy interventions can be understood, but has also been a catalyst for change in the overall approach of therapies. It is a conceptual model that has been endorsed by all three profession,20–22 with guidance issued to support its implementation (e.g. College of Occupational Therapists, 2004; Royal College of Speech and Language Therapists, 2005) as well as being integrated into the training of new therapists. 23

In 2002, WHO proposed a conceptual model of disability that sought to bring together elements of the pre-existing medical and social models of disability, and incorporate them into a biopsychosocial model of disability. 16 Figure 3 offers a representation of this model.

FIGURE 3.

The ICF model of disability and health.

The meanings of the terms used in this model are as follows.

p. 10. 16 Reprinted from Towards a Common Languages for Functioning, Disability and Health: International Classification Framework. World Health Organization, © 2002. URL: www.who.int/classifications/icf/icfbeginnersguide.pdf (last accessed 21 December 2017)

Overall approach: the objective of the intervention

In describing the overall objectives of a therapy intervention, interviewees framed this in terms of the ICF model. Three possibilities were described.

1. First, the ‘deficit model’: here remedying physical/body dysfunction and distortion is seen as the end point, or objective, of therapy interventions or, as one interviewee described it, ‘fixing the child’ (OT-PB-01). This model can be regarded as the original starting point of all three professions.

2. The second approach focuses on the achievement of specific activities, or occupations, that the child’s physical impairments have limited or rendered difficult, for example walking or articulating verbal speech. When interviewees offered a chronology of the emergence of these different models, this approach was described as emerging in the 1990s.

3. The third approach is child/family focused, goals focused, in which the objectives of therapy are driven and guided by the child’s/family’s goals and desires. These goals should be expressed in terms of the child’s participation in everyday life, or life situations, that is relevant and meaningful for a child of that age (e.g. learning, self-care, communicating, moving about, friendships and being part of a family), rather than outcomes related to body structure/function or achievement of specific skills or activities. Within this approach, addressing dysfunction or impairment is no longer the key focus. This opens up alternative ways of intervening which may be as, or more, successful. One example is achieving independent mobility through the use of a wheelchair rather than through a lengthy and intensive physiotherapy programme. Another example is teaching a child to use augmentative and alternative communication systems and devices to communicate, or supplement verbal communication, rather than simply seeking to achieve verbal communication through speech and language therapy input:

The really complex ones, you can do as much therapy as you like, and it probably won’t make much difference – so let’s focus on the environment and the equipment and stuff . . .

A1

A slightly different, or concurrent, conceptualisation emerged from interviews with occupational therapists. It had a more dichotomous stance: a ‘deficit-focused’ model versus a focus on achieving occupation, or participation, through modifications to the environment and/or providing equipment to facilitate the child’s engagement or participation.

Overall approach: the role of therapist

There was a consistent view that, over recent years, the role of therapists in the delivery of interventions to children with neurodisability has shifted. A number of interviewees – and across all therapies – referred to a ‘consultative model’ whereby the therapist assesses the child, develops an intervention programme and then trains, or ‘upskills’, others (assistant practitioners, parents, child, classroom assistant and/or teacher) to deliver it, with supervision and ongoing monitoring. This approach was regarded as more prevalent within community, rather than secondary care or acute, settings.

Two drivers for this change were presented by interviewees. First, many interviewees noted the reduction in funding for therapies for children with neurodisability, which had forced changes in the way therapists worked. The way NHS trusts have chosen to address resource constraints has, however, differed. In some trusts, specialty posts have been maintained – albeit operating in a consultative role – whereas in others, posts have been lost and/or downgraded. A second driver – attributed to the number of ‘influential leaders’ in the field – was the acknowledgement that, to be effective, therapy interventions cannot be restricted to what are relatively occasional sessions with a qualified therapist in a clinic setting:

. . . it’s an intelligent way of capacity building. Also, in schools it’s the staff who know the children better than the therapist does. The therapist will come in one or two times a term so it would be ludicrous to expect a change with that amount of contact.

R2

There was a diversity of opinion as to whether or not this change is for the better. The dominant concern was that non-therapists may not be sufficiently skilled or competent to respond to changes in functioning or to evaluate the impact of the interventions and adjust the intervention accordingly:

There is something about the skill of the therapist in working with any one child with particularly complex needs, to be able to tune in to how the child is responding to what you are doing with them. . . . To make the kind of adjustment that you need to do to make the therapy work there and then, and to know whether you can push onto something more complex . . .

O2

. . . I think intervention effectiveness is actually being diluted . . . by having less skilled staff. I can understand why they are doing it, but I think it’s short-sighted.

Z1

A second concern was adherence to intervention programmes. This was typically spoken about in terms of the multiple demands on people’s time and/or a lack of understanding of the intervention programme and its objectives. Finally, this represented a very significant change in the day-to-day work of therapists that may be difficult to accept and assimilate:

Within practice there is a reluctance to change that [move to less hands-on and more activity-based therapy], particularly among those who have been trained in manual handling of patients and how to support and help them move.

F2

Furthermore, it was noted that parents may struggle to accept the consultative approach. Many interviewees believed that seeking the input of private practitioners was often due to a desire for more intense input from a qualified therapist.

Overall approach: the role of the child and family

The goals-focused approach described earlier was often spoken about alongside descriptions of a change in the way children, and their families, are regarded within the context of a therapy intervention. The shift in thinking described was from regarding the child/family as passive recipients to viewing them as active participants in the therapy intervention. Some interviewees referred to this is a move from the ‘expert practitioner’ model to the ‘expert parent’ model:

We are looking for children and families to be active in the rehabilitation process. So, instead of a child coming into hospital and having all this therapy done to them, they are a real active participant in what they are doing and they’re actively involved in their rehabilitation process.

L2

Occasionally, this shift was located, or attributed, within a wider change in the NHS to a focus on self-management. This was perceived to be driven by both an outcomes-focused approach and constrained resources.

Again, there was a sense that this study was being conducted at a time when thinking within each of the professions on such matters was in a state of change. Thus, we had interviewees who firmly advocated opposing approaches. Equally, there were interviewees who described the approach they were working towards, but had not yet attained:

I want us to get to the situation where we are working with families, giving them the right information – and doing that well and early enough – so that they can be empowered to . . . make decisions.

A1

Therapists have always worked very closely with parents, and older children too, in terms of goal-setting and goal preferences. The idea of offering people informed choice is not there . . . at the moment.

P2

With respect to the move to place children and families more centrally in decision-making and ‘condition management’ processes, a number of interviewees referred to ‘health-coaching’ models or programmes which were informing or influencing changes in their ways of working.

Overall approach: integrating therapy into everyday life

The final interconnecting strand within the concept of ‘therapy approaches’ is integrating therapy interventions into everyday life. Again, interviewees spoke of a shift in thinking: taking therapy out of clinic settings, and delivering in the settings and environments where the child spends his or her time. Linked to this were notions of integrating the therapy procedures into everyday activities and aiming to design the intervention to maximise engagement and motivation:

I say to families that it’s no good just doing things for a short time, so it’s better to incorporate activities into everyday life, or position their child so they can do something else as well. That way activities get embedded and done more often, and so more likely to make a difference.

F1

Once more, the extent to which this approach was dominant in an individual therapist’s practice was dependent on the extent to which their practice reflective goals-focused, participative approaches.

A number of constraints to adopting such an approach – particularly around the settings in which therapists practised – was noted, particularly when, in the past, therapy was delivered in outpatient clinic settings. Here, commissioners could be reluctant to resource therapists working in the child’s everyday settings.

Traditional schools of thought

Different schools of thought advocate, or stipulate, different techniques or procedures to use with a child. Alternatively, they may posit different views on the mechanisms of change underlying technique or procedure. This notion of distinct schools of thought appears to be very similar to that observed in other specialisms. (For example, psychological interventions typically sit under different schools of thought, such as psychodynamic, gestalt and cognitive–behavioural.)

Although the notion of different specific schools of thought was referred to by interviewees across all three professions, it emerged most strongly in our interviews with physiotherapists. This was both in terms of the way they may act to firmly ground (or constrain) an individual therapist’s approach or, more typically, as an area of controversy or concern. In both respects, neurodevelopmental approaches (e.g. the Bobath approach), sensory integration theory and conductive education were the most frequently mentioned. Bobath and sensory integration theory also emerged as divisive schools of thought in our interviews with occupational therapists. A concern about, or active rejection of, these schools of thought was explained in terms of their basis being located within a ‘deficit model’ of intervention, and/or existing evidence on their impact/effectiveness.

As is a common theme through many of our data, there was a sense that these distinct, traditional schools of thought were, and would continue to become, less dominant. One of the key drivers for this appears to be the ongoing, higher-level reconstructions of what therapy is and what its objectives should be, which we described in the previous section.

Emerging schools of thought

The shifts in overall approach described earlier – from a deficit model to activity-based and now goals-focused/participation ways of working – appear, however, to have led to the emergence of new schools of thought within the professions. Of those described to us during the study, these typically drawing on principles or approaches developed within other specialisms. For example, cognitive–behavioural, problem-solving approaches, sometimes referred to as ‘coaching’, were reported as being used within occupational therapy. Global notions of ‘goals-focused approach’, family-centred practice and ‘evidence-based practice’ were referred to across all therapies as ‘schools of thought’ that the professions were adopting.

Early intervention

The final school of thought, applicable across all therapies, was the notion that early intervention is essential, and this should be the time when the intensity of the intervention is at its greatest. The rationale for early intervention is that it is likely to yield greater impact: supporting development and preventing permanent damage and/or deterioration. This argument is based on notions of neuroplasticity, physical and cognitive development.

Thus, it was also typically reported that the intensity of therapy interventions decreases as the child grows older (or in terms of time since brain injury). However, what was less clear was the rationale for tailing off therapy; indeed, it was a source of concern among some interviewees. Often this was expressed with respect to physical changes associated with puberty or to a child’s ongoing cognitive or communication development, and the implications this may have for the child’s needs for therapy input:

Younger children get more research and more therapy. Therapy is front-loaded so families get most at the preschool stage, some in primary school, rarely any in secondary school and none as adults.

N2

Professional autonomy

A first overarching principle of practice within therapies is the concept of professional autonomy. In many interviews, therapists were presented as working in an autonomous, individualistic way within their scope of practice (or qualification):

Assessment and hands-on work is probably more individualised, but we all sign up from the same baseline.

F1

. . . certain institutions or individuals will have a favoured approach but ultimately it’s individual choice. Each physiotherapist is an autonomous practitioner . . .

M2

This autonomy operated both in the choice of interventions and in the intensity, or dose, of the interventions. Despite this notion of autonomy, some interviewees noted that, within the NHS, practice has become more standardised over the past decade, driven by emerging evidence and the shift in overall approach to providing these therapies. The publication of protocols and the implementation of care pathways – both described below – also contributed to a standardisation of practice.

Responsive practice

The ability to make an ongoing assessment, even within the context of specific session, of the way a child is responding to an intervention and/or their ability or motivation to engage with an activity or procedure (sometimes on a moment-by-moment basis) was regarded as a core therapy skill. Responding to the child, and their response to an intervention, meant that therapists may be continually tailoring either their work with a child or the overall management of the case:

At the beginning of a session I may not have a definitive goal in mind, but will have an idea of what I’m hoping to achieve and structure the session accordingly. Over time, I may adapt and change the goals in order to make progress. So it’s a very fluid process and we need to be responsive and adaptive to get the best out of the child.

M2

Managing prognostic uncertainty

With more complex cases, the issue of prognostic uncertainty and a lack of evidence of intervention effectiveness could lead therapists to trial a number of interventions, sometimes simultaneously, to establish a child’s potential capabilities and/or which technique suited the child best:

Parents with children with cerebral palsy always ask ‘[When] is my child going to talk, is spoken language going to be possible for them?’ And we can never answer that question because each child is so different. So it may be we set off on an eclectic approach, [thinking] . . . ‘let’s do some work on vocalisation or signing or symbols as well . . .

V2

The role of protocols and care pathways

Participants used the term ‘protocol’ in two distinct ways. First, it was used to refer to the way in which a team or service managed a referral to their service. Here, both the terms ‘protocol’ and ‘care pathway’ were used. Thus, some study participants described the development, and early implementation, of a number of care pathways within their service, each specific to a particular presenting need or diagnosis. Typically, these were multidisciplinary, or integrated, pathways specifying who and when different professional groups should become involved with a child, and for how long.

Second, and more specifically, some techniques or presenting clinical needs were identified as having clear protocols in terms of assessment and/or management. For example, frequent references were made to NICE guidance on the management of spasticity. Interviewees drew attention to the fact that for many children with neurodisability, especially those with complex needs, there will be individualistic practice happening alongside protocol-informed practice(s).

Issues were raised of adherence to protocols, particularly when others were delivering the treatment, and the potential difficulties of implementing a protocol in an appropriate way for a particular child:

Protocols are anyway problematic because children vary and delivery is not always under their control. Children are at different ages and different stages and living in different families. . . . [And] to have protocols – good, evaluated ones – is one thing, but to implement them in families’ everyday life is another.

M1

However, a much greater proportion of therapists’ work was reported as lacking any protocols. As a result, there could be great variation in the way in which a case was managed:

[There is] . . . huge variation in the interventions they receive. Not only in what they receive but in how often and from whom they receive it.

N2

It’s been quite easy to write a pathway [protocol] for children with, say, hemiplegia receiving CMIT [constraint-induced movement therapy], or for those having Botox [botulinum toxin] injections as there’s quite a lot of evidence or guidance to draw on. Whereas all the others just get based on your clinical experience of managing other children . . . and what you see in the child.

C1

Working out of a toolbox

Within the notion of professional autonomy described above, many interviewees described themselves as working out of a ‘toolbox’:

What you tend to find in practice is that most practitioners use an eclectic approach. It’s a little bit of this and a little bit of that. . . . it’s a little bit of what you’ve got in your toolbox.

K2

We have a great big menu of interventions to choose from.

P2

It’s about having that huge toolbox and choosing the right thing for the child, on the day almost.

W2

Thus, in each case, a therapist brings a range of techniques, procedures, activities or items of equipment. There follows, through assessment of the child and the wider context, a process of clinical decision-making as to what particular ‘tools’ to choose, something that we report on in the following section.

Our analysis suggests that a number of factors influence the content of an individual therapist’s toolbox:

• the ‘overall therapy approach’ to which the individual therapist adheres

• their position, or beliefs, regarding schools of thought

• their training

• practices they have learnt from colleagues

• trends or ‘fads’

• team/clinical lead views

• the techniques, etc., that commissioners will fund

• clinical guidance (e.g. from NICE) or guidance or recommendations from professional bodies

• evidence.

There is a lot of individualistic work going on. We have very experienced therapists with strong beliefs based on their own clinical experience, which can be very powerful.

P1

The notion of ‘embedded’ or ‘inherited practice’ was frequently mentioned. This was much more likely to be grounded in clinical consensus rather than in any evidence base:

There is a good level of consensus of opinion in what’s best in treatments and approaches to treatment which is cascaded down to therapists. . . . the team generates practice which then perpetuates down.

I2

There is an awful lot of tacit knowledge that’s handed down through the profession . . . certain techniques, [and] ‘that is how you do it, [and] this is the right way to do it . . .’

F2

Embedded practice was also seen as a barrier to change in therapy approaches or to evidence suggesting that an intervention may not be effective:

. . . but a lot of therapists have done this [refers to a particular technique] for 30 years. [And] they can’t stop doing it if you don’t put anything in its place.

F2

Trends or ‘fads’ in terms of particular techniques, procedures, activities or equipment were frequently mentioned by interviewees. Some were enthusiastic in their descriptions of, for example, a new technique that they or their team had started to use. Others were greatly concerned about the lack of an evidence-based rationale for adopting new techniques, equipment or practices. Furthermore, the commercial interests of manufacturers, or organisations, in promoting new techniques or equipment worried some interviewees. A further concern was that the successful use of a technique with a small number of children, or with respect to children of a particular developmental stage or diagnosis, could lead to wide-scale roll-out within a locality (or more broadly), which may not be appropriate:

There’s a massive growth in [name of technology] at the moment . . . and that’s very liberating for lots of young people . . . but it’s often being rolled out to children who are not ready yet . . . families and teams are spending an awful lot of money on technology that’s not being used effectively, and ultimately gets abandoned.

O2

That said, there was an understanding of why therapists can be drawn to new (untested) practices and equipment. These are often presented, or marketed, with an anatomical or neuromuscular ‘rationale’ and some persuasive case studies. Furthermore, new techniques or practices may offer therapists a structure and process to their work. For example, a manual, an assessment pro forma and guidance on intervention intensity may be offered. Some interviewees believed that this could be very appealing to practitioners who were trained to be autonomous and work in a very individualistic way, but within a discipline where there is little sound evidence on which to base clinical decision-making:

You can book to go on your [name of course] or your [name of other course], and then you have your kit . . . [and then] . . . you know what you’re meant to be doing.

S1

You’re taught in a staged way. It’s a clear, almost manualised, road map of what to do. It’s a qualification ‘in something’. It fills a gap.

P1

Finally, the role of evidence in informing the content of a therapist’s ‘toolbox’ was typically regarded as very limited. However, included in our study sample were settings where sustained attempts were being made to use evidence, when possible, to specify intervention approaches. In these situations, evidence was (often) being drawn across from adult rehabilitation and/or other diagnostic groups.

Mode of delivery

A less common topic referred to in relation to therapy practice was mode of delivery. It appeared that, in the majority of interviews, study participants assumed that the research team already knew that they were referring to individually delivered interventions. However, a few interviewees reported using group-delivered interventions, and this typically appeared to be in relation to the management or treatment of non-complex issues.

Clarity around the objectives of therapy interventions

Parents commonly expressed that they had no knowledge or understanding of the decision process and rationale behind the therapy that their child was being offered. Furthermore, many parents reported being unclear about the aims, or goals, of the therapy being provided, and how progress towards those goals would be monitored, reviewed and, if necessary, the goals revised or updated.

Satisfaction with the child’s therapy

Parents varied in terms of satisfaction with the amount of therapy that their child was receiving. Those more likely to be content were those with younger, preschool children. Some described therapy ‘dropping away’ once their child started school.

Two key factors emerged as associated with parents’ level of satisfaction: whether or not the level of contact with the therapist was perceived as adequate, and continuity of therapist:

They [speech and language therapists] don’t come often enough to get to know your child.

We’ve never had a good [occupational therapist] because we’ve never had one for more than one session.

There was general agreement among parents that their children did not get enough therapy. Although such statements were usually followed by a caveat expressing a belief that therapy services were significantly under-resourced, some parents noted that restricting access to therapy was short-sighted as it may lead to greater levels of dependency and/or more expensive treatments being required. The example provided was preventing contractures through physiotherapy, rather than managing them through surgery.

Parents reported experiences, or an awareness, of geographical differences in therapy access. The phrase ‘postcode lottery’ was used, with some parents aware that geographical differences were, to some extent, due to commissioning decisions. Some parents believed that therapy services were directed towards children with less severe needs who represented ‘quick wins’. Others noted that some of their child’s less prominent needs were not being addressed by therapy provision, and wondered if this was because they were not severe enough. Overall, there was confusion about how decisions were made about the acceptance of referrals and the resources allocated to a case.

Parents often described having to ‘push’ or ‘bang on’ to get the level of therapy that they felt their child needed. One parent described herself as a having to become a ‘warrior parent’ to secure therapies for her child at the level she felt they had to be, and a few parents reported unpleasant ‘confrontations’ when they protested about their child’s levels of therapy. Some had tried to argue for greater provision but had given up:

We’ve given up on speech and language: in the end we had to give in and accept our son as he is . . .

Concern was expressed for those children whose parents were not able to pursue issues of perceived deficiencies in care.

Models of provision: ongoing versus episodic care

Some parents reported experiences of repeated cycles of time-limited provision, discharge and re-referral. Parents consistently favoured arrangements that allowed ongoing access to therapy support, ideally from the same therapist. When parents felt that their child did not need continual input, open discharge arrangements (i.e. when re-referral was not necessary) were valued.

The key difficulty parents identified with episodic care was the lack of continuity of care. For example, one parent reported that her child had been seen by 12 occupational therapists. Another mentioned that seven physiotherapists had been involved with her child. This lack of continuity was viewed as problematic for two reasons. First, therapists were not in contact with the chid long enough to understand his or her needs and for the child to ‘get to know’ them. Second, some parents believed that it led to therapists having an incomplete understanding of conditions or diagnoses, in particular that the conditions are lifelong with changing needs.

Integrated care

A dominant theme in our conversations with parents was the integration of provision from the three therapies. The majority reported that they did not experience this. They were not aware of any joint or integrated assessment, outcomes/goals-setting, and therapy delivery between physiotherapy, occupational therapy and speech and language therapy. Parents reported that this left them, and school staff, confused about the correct approaches to supporting and working with the child. As one parent noted:

. . . they don’t work together, they look at the child just from their perspective so the teacher and parent get mixed messages . . .

This situation could also leave parents feeling overburdened about what they were expected to do with their child in terms of delivering the therapy programmes set out by the therapist. Parents with experience of specialist independent education provision (with places purchased by local authorities) noted that this seemed to be the only setting in which a true integration of therapies was achieved. This was because the therapists were core members of staff and always on site.

Parents also explored notions of integration in terms of the position of therapy provision with respect to the wider care and management of their children. They spoke positively about child development centres, believing that these supported integrated working owing to the co-location of professionals and joint working practices. Less positive were experiences of Education, Health and Care Plans, which are part of statutory assessment and planning processes for children with additional needs over and above those provided within usual special educational needs support,26 as these had not always led to co-ordinated approaches to therapy provision and interventions.

Parents’ roles

As noted in the previous section, there was general acceptance among parents that they needed to be actively involved in delivering their child’s therapy ‘prescription’ or intervention programme. We describe in a later section their experiences of assuming this role.

On a separate note, a common theme in parents’ accounts, albeit not expressed by all, was that therapists did not acknowledge or value parents’ unique and ‘expert’ knowledge of their child. The example given was that parents may be best placed to judge when to ‘push’ a child in terms of the challenges or expectations placed on them for a particular therapy intervention. More generally, parents spoke of how they knew their child best, including their strengths and weaknesses. Related to this was a desire for a greater sense of working in partnership. Some parents described a hierarchical model in which disapproval was expressed when parents failed to ‘adhere’ to a therapy programme. In contrast, parents believed that partnership working benefited the child.

Parents also regarded themselves as advocates for their child. This was represented in their desire to be actively involved in assessment and planning processes, seeking the best for their child and speaking on their behalf. In terms of the last of these, sometimes this was because the child had significant communication and learning impairments, and other times the child had requested this.

In addition, some parents reported assuming the role of training staff in settings where their child spent time, for example day-care nursery or school. Furthermore, they reported assuming a wider monitoring of therapy provision at school, particularly checking that the provision set out in their child’s Education, Health and Care Plan was being delivered.

Finally, some parents reported assuming a co-ordination role in which they held and appropriately disseminated the disparate (and sometimes contradictory) information and advice given to them by the professionals involved with the child. As one parent noted, ‘we are like a hub’.

Other issues

Why look outside the NHS?

A number of parents reported paying for private therapy. This included buying the services of an individual therapist and purchasing an assessment (and possibly also therapy and ongoing review) from a private provider organisation. The predominate reason for doing this was concern about the level of therapy support that their child was receiving from NHS provision or that provision was not addressing all of their child’s perceived needs. Some parents also explained their decision to use private providers in terms of responding to their desire, as parents, to do or try anything that might help their child. It was noted that private providers were not constrained in what they could offer in terms of intensity and types of intervention. The latter sometimes referred to new procedures or programmes; as one parent remarked, ‘they can think outside the box’. Others had turned to private providers because their NHS service no longer offered an intervention that the parent felt benefited the child. One parent who had chosen this route explained that ‘sensory integration is something my child desperately needs’.

Parents’ experiences of the assessments conducted by private specialist centres (physiotherapy and speech and language therapy) were very positive and reported as taking goals-focused approaches. Parents also valued having a clear plan for ongoing review. However, a number of parents reported that, post assessment, achieving the intensity of delivery required by some of the ‘prescribed’ therapy programme could be very difficult as a result of the various demands on parents’ and children’s time, and children’s capacity to engage in therapy after a day at school. Indeed, understanding the demands that such provision may place on a family was the reason why one parent decided against pursuing this option, believing that it would put too much pressure on her with ‘everything else going on’. Other parents’ experiences were different and they had successfully integrated the programme recommended. Aside from private therapy provision, parents reported paying for other types of interventions such as complementary medicine.

We asked parents whether or not they reported to NHS services that they were using a private provider. Some reported deliberately choosing not to for fear of losing the NHS provision that their child currently received. Others reported taking recommendations from private assessments to their NHS therapists or paediatricians and, on occasion, this had resulted in changes in the provision or timing of interventions. Parents’ experiences of asking advice from NHS therapists about seeking privately delivered interventions were mixed: some had been encouraged, and others had not.

Parent-initiated and -delivered therapies

Parents also reported independently identifying and delivering interventions to address their child’s impairments. The reasons for this varied. Some felt that NHS services did not have sufficient aspirations for their child, or they did not believe the result of a NHS assessment. Others felt that the NHS interventions being offered were without structure and the end points or objectives were unclear. Others sought out alternative interventions as a means of supplementing what they viewed as insufficient levels of contact with NHS providers. Finally, and sometimes underlying some of the reasons already described, this option was pursued simply ‘in the hope it will help’. Some parents reported positive outcomes for the child as a result of their efforts. For example, one parent reported that, on the advice of a friend, she had attended training in a signs- and symbols-based communication system. She recounted how this had supported her child to use signing and develop some speech, even though she had initially been told by her speech and language therapist that ‘nothing could be done’.

Parent-sourced equipment

Parents also reported independently sourcing equipment for their child. The most common reason was believing that NHS therapists were not aware of the current range of equipment options and were unable to supply the best equipment for their child. Parents reported finding out about equipment from other parents (e.g. via web-based parent support networks) and attending demonstration days run by equipment suppliers. Other reasons for purchasing privately were unreliability of NHS equipment and long waiting times for repairs. Some parents reported carrying out fundraising activities to buy equipment. Parents’ stories of sourcing equipment often concerned mobility-related items such as walkers or different types of wheelchair. Sometimes it was a second version of equipment that the child had already but was not suited to all of the activities the child wanted or needed to engage in. One or two parents reported taking a suggestion for equipment to their NHS team and persuading them to order it for their child.

Changes over time

Parents typically described the preschool years as the most intense in terms of the time demands made on them to deliver therapy interventions. However, starting school could lead to its own difficulties as the opportunities to do therapy work reduced; children were tired after school, and the options and opportunities for other activities may have increased. A parent observed:

. . . having to do therapy after school means my child has much less of a life than she should have.

Conflicting feelings

Parents described a sense of conflict. They felt pressure to adhere to a therapy regime, fearing that their child would suffer if they did not. As one parent noted, ‘I’m scared she will deteriorate’. At the same time, however, parents felt guilty that their insistence on sticking to a regime meant their child was missing out. Parents could not identify a way to bring these competing priorities together, as one parent expressed:

There’s the real word and the therapy world . . . you can’t alter it, that’s how it is.

There was a sense that parents believed that therapists did not fully appreciate the demands and conflicts caused by introducing therapy interventions. For example, in replying to a question about how a therapist had reacted to finding out the parent had stopped implementing a particular therapy regime, this parent responded:

If they’re doing their job right they do listen to you and accept it. But you can understand their frustration that they want to improve the legs and so on . . . that’s their world.

Parents described having moments when they recognised that they had become overly zealous about maintaining therapy regimes. As one parent recounted:

You get ‘programmed’ as to why you’re doing it . . . but you want them to have a life as well. It’s a balancing act.

Impact on wider family life

Many parents described the struggle of fitting their child’s therapy programme into everyday family life. For those with more than one child with therapy or other additional needs, this issue was even more acute. All reported that, on occasion, and sometimes more frequently than that, ‘the exercises go out of the window!’.

Parents’ capacities

There was agreement that parents differ in their capacity to take on the delivery of a therapy intervention. Some remarked on the need to protect themselves from over-reaching. As one parent put it:

There’s a balance to be achieved between what you do for child and keeping yourself sane.

Supervision and support

Many parents reported concerns, and sometimes anger, about the level of supervision they received from therapists. These concerns related to whether they were still doing exercises, or other work with the child, in the way that they had been instructed. When the child started school and therapies were being delivered in that setting, parents often expressed confusion about what they should still be doing, if anything. Finally, parents agreed that guidance on what to prioritise would be extremely helpful.

Children’s responses

Almost all parents reported that their child resisted the implementation of therapy programmes, either routinely or occasionally. This included practising exercises related to motor or speech/communication, splinting and the use of sleep systems. The reasons why children resisted included the fact that the therapy restricted them doing other activities, that it was painful and that it disturbed their sleep. Various ways of managing this were reported, both between parents and on a situation-by-situation basis. Sometimes it led to a treatment being abandoned altogether. In a couple of instances, child mental health professionals had been brought in to support the child’s acceptance of an intervention.

Parents described strategies they developed to overcome these difficulties. For example, with younger children, physiotherapy exercises could be undertaken through play, and with older children this could be done by focusing on what one parent referred to as ‘recreational physio’, such as joining a sports club or team. Parents acknowledged these strategies as a ‘balance’, as using them could mean moving away from the specific exercises suggested by physiotherapists.

Child-focused approaches

Parents particularly appreciated therapists who clearly appeared to value their child and want the best for them. Parents described a sense of isolation if this was not the case, whether experienced with respect to a particular aspect of their child’s care or to the wider situation:

I think in every area nobody thinks your child’s got potential. Why should our children not be pushed to reach their full potential? It’s like they’re written off and it’s up to you as a parent.

Goals-focused approaches

It was clear in discussions with parents that there was a preference for goals-focused approaches. As we reported in an earlier section, many parents did not report this experience. However, they were clear that they would value ways of working that offered a shared, transparent and structured plan for how their child’s therapy interventions were working towards agreed goals, including systems of review and subsequent adaptation as needed.

Furthermore, within a goals-focused approach, parents wanted the focus to be on higher-level outcomes. Some parents did not feel a longer-term view was in the minds of the therapists working with their child, or that it had certainly not been overtly expressed to parents in those terms. A parent expressed the sentiment in this way: ‘unlike parents, therapists just think about today, not what will benefit my child in the longer term’. This approach was regarded as leading to a focus on functional outcomes, rather than identifying alternative ways and means by which goals related to participation and well-being could be achieved.

Two parents described their situations thus:

We’ve had walkers shoved at us left, right and centre. But this has left my child feeling isolated at school because he couldn’t keep up with other children.

. . . my priority is that my daughter is mobile, regardless of how. I feel it would be better to work on her upper arm strength so she can use a wheelchair. She just needs to get [to places] because she’s got stuff to do.

Many parents stressed the need for greater clarity about the aims of therapy interventions. Some parents observed that they had experienced differences between therapists in terms of where the objectives of therapy were ‘pitched’ or presented to them. For example, one parent commented:

. . . it’s more the OT [occupational therapist] who looks at the overall picture [of participation and independence], the physio is more about specific movements . . .

Within this process, parents did not want resource constraints to limit their children’s aspirations. Some had experience of this. For example, one parent described a situation when their child had identified riding a bicycle as her goal, but instead she was offered a tricycle. The parent interpreted this response as being because ‘. . . that wouldn’t require their [i.e. the therapist’s] input’.

Follow-up and review

As noted in the previous section, but important to explicitly identify, parents consistently spoke of the need for therapy interventions to include systematic processes, of which they were aware, that monitored and responded to a child’s progress. Parents who had accessed private provision often identified this as one of the most valued aspects of using private providers.

Knowledgeable about the child’s condition and therapy options

Parents valued working with therapists who knew about and understood their child’s condition. Some parents of children with conditions other than cerebral palsy expressed concerns that therapists may be transferring practice from their better knowledge of cerebral palsy to their child’s condition without properly understanding the limitations, or consequences, of doing this.

In addition, parents valued feeling well informed about the therapy options available to their child. They found it helpful and reassuring if their child’s therapist had some awareness of alternatives.

Creativity

Some parents reported very positive experiences with therapists who had been willing to ‘think outside the box’ and pursue what might be quite unique approaches or solutions to their child’s therapy needs as an individual. Parents spoke very highly of such experiences.

A holistic, multidisciplinary approach

When parents had experienced therapy provision that was integrated across the therapies and integrated the collective aims of therapy into the school context and curriculum, this was highly valued. As this parent described:

My OT [occupational therapist] and physio communicate . . . they have a joint aim of working towards my child’s freedom and independence, and they are working closely with school on this.

Some parents were clearly frustrated that one element of their child’s needs remained unaddressed. They believed that, without the work and support to develop skills and abilities, or finding alternative ways to enable the child, interventions that focused on other aspects of the child’s impairments would be relatively meaningless and have little impact on overall outcomes. Often during these discussions reference was made to a perceived lack of attention and resources available for speech and communication support. As one parent observed, ‘if my child’s speech and language isn’t there, it means they don’t have the means to communicate with anyone, which then impacts on other areas of their life’.

Parents consistently valued therapists who took a wider interest in the child and family and who were able and prepared to offer, where appropriate, wider advice. Within this, parents welcomed therapists speaking with colleagues in other therapy teams or services to ensure co-ordinated and consistent approaches to the care and management of the child.

Finally, a few parents specifically mentioned the valuable role that therapists could play in supporting their child’s emotional well-being, particularly when the child is sensing their ‘differentness’ to peers.

Working in partnership with parents

Finally, we would note and reiterate material reported earlier in this chapter regarding the way therapists worked with parents, in particular whether or not there was a sense of partnership, respect and shared objectives.

Overall approach and schools of thought

To a greater and lesser degree, these components intersect, with one informing, or influencing, the other. As described in Chapter 4, the views and practices regarding the overall approach to therapy interventions and schools of thought influence perceived objectives of therapy and decisions regarding the techniques, procedures and/or equipment used. The overall approach taken was viewed as being one of the ‘active ingredients’ of a therapy intervention. Indeed, some believed that this had a stronger impact on outcomes than the actual techniques used:

Child-centred goal setting is probably one of the many active ingredients of therapy, but there is as yet, little evidence to support this.

K1

The techniques, procedures and/or equipment used or provided

The intervention itself – and the duration and intensity of its delivery – was consistently identified as an active ingredient in the impact that physiotherapy, occupational therapy and speech and language therapy had on a child’s outcomes. It was noted, however, that this was a complex area because of the potentially eclectic nature of a therapist’s work with a child:

Therapists take elements of different interventions so it becomes such a mish-mash. And you don’t know what is what and what works . . . so you’re doing a bit of neurodevelopmental therapy and postural management and sensory integration and goal orientation. Research is needed to unpick this mix and identify the active ingredients of interventions.

Q1

Explanations were sometimes offered of the mechanism (anatomical, physiological or neurological) by which a technique or procedure had an impact on body structure or function.

In some instances, a theory and its associated evidence were described as informing the development of a particular technique, for example wider theories of how people learn motor or communication skills, physical development, exercise and fitness. For others, a ‘theory’ had been developed to offer a rationale for a particular technique or procedure. It is important to note, however, that the veracity of these theories had not necessarily been tested.

What the therapist brings to a therapy intervention

What the therapist does within an intervention

Box 4 also sets out a number of active ingredients located within the roles a therapist assumes in the context of an intervention. These include:

• clinical decision-making

• ongoing assessment and review

• physical contact

• the work with the family

• creating a ‘therapeutic team’ and therapeutic environment.

We describe each of these in turn.

The capacity of the wider ‘therapeutic team’

The issue of capacity of both schools and families to fulfil their role in implementing a therapy prescription was raised many times. It was viewed as having the potential to play a significant role in the effectiveness of a therapy intervention. School staff undertaking this role (usually teaching assistants) may not be supported – in terms of the time allocated to the role, or the extent to which the school accommodates or integrates the child’s therapy requirements into the curriculum or usual practices. Participants reported that parents’ capacity to accept, understand and take on the role of supporting therapy programme delivery varied enormously (and, as noted earlier, itself influenced clinical decision-making):

Some families are more able than others, for different reasons, [to deliver interventions].

K1

Interviewees also described how a family’s capacity, including their levels of motivation, may change over time as a result of other events and situations. Thus, this was not necessarily a stable or predictable element of an intervention.

Setting

The setting of the intervention – whether a clinic or the home/community– was regarded as an active ingredient. Setting emerged as an important aspect of a therapy intervention in discussions about the shift towards participation-focused outcomes. This is because such outcomes are naturally focused on the everyday lives of children and the settings in which they find themselves, or want to participate.

The importance of the therapy setting was particularly voiced by physiotherapists. This may be because occupational therapists more typically work in home and community settings, and speech and language therapy is often introduced only during the nursery or early-school years. Traditionally, however, physiotherapy (especially in the preschool years) has been delivered in clinical settings. However, in seeking to adopt participation/goals-focused approaches, physiotherapists believed that, to be most effective, they needed to work with children and families in their everyday settings. Some reported that they were constrained in the extent to which they were permitted do this:

There’s quite a push from the manager’s point of view for us to do more stuff here where we work and less out in the community. To cut down on time and cost . . . [but] as a therapist I believe that therapy should take place where the child’s accessing or participating in a particular activity. I sometimes find it quite hard to argue that.

C1

Access to equipment

Study participants based in specialist services (residential schools or tertiary centres) often noted the value of that setting in terms of offering access to (specialist) equipment that supported positive outcomes. On a different note, it was reported that children might not have access to their equipment (or be able to transport it) in all of the different places and settings where they spent their time (e.g. home, school, nursery, respite/short breaks).

Space to use equipment

Some interviewees noted that a family’s housing situation, particularly in terms of space and levels of access, may influence the options available to them for equipment to be provided or installed.

Access to clinical expertise

It was acknowledged that some of a therapist’s skill set is acquired only through clinical experience. Many participants noted that senior posts had been or were being lost across therapy services owing to strategic decisions by NHS trusts. Thus, clinical experience and supervision was being removed from therapy teams, or had been made more difficult to access. This was an issue of grave concern among some interviewees:

I actually think they are diluting the effectiveness of the intervention by trying to save money by having less skilled staff . . . it’s understandable, but short-sighted. You need to have that level of expertise on a team in order to get the best outcomes.

X2

What they are drawing on there is lots of knowledge from other children they’ve seen, their knowledge about the theory, and their clinical experience and practice.

O2

Positive outcomes associated with mode of delivery

One interviewee observed that physical interventions delivered in hobby/skill acquisition groups (e.g. upper-limb therapy work delivered via magic or circus skills training camps) and/or involve participating in fun and enjoyable activities may result in secondary outcomes. Those outcomes identified included increased confidence, increased self-esteem and increased social networks:

The therapy programme is not supposed to be doing that, it’s supposed to be about hand function. [But], just by doing the activities and meeting other children, you’ve got the secondary impact of all the cognitive and social development things going on.

I2

Access to other services

It was also pointed out that, through signposting or referral to other services or resources, therapists may support wider outcomes being achieved, or have an impact on outcomes directly. This applied to both the child (e.g. through contributing to educational assessment processes; supporting referral to wheelchair services) and the parent (e.g. signposting to a local support group).

Alternative understandings

Some interviewees used the ICF concepts of ‘activity’ and ‘participation’ interchangeably. Others queried whether these were distinct concepts:

There’s always a discussion about what’s an activity and what’s participation? . . . and how do you separate the two.

O2

Among some, the concept of participation appeared to be defined, to a greater or lesser extent, in terms of engagement with the mainstream world, and typical development. This understanding appeared to contribute to a belief that the concept of participation did not ‘work’ for children with severe or complex impairments, and had been inappropriately applied in these instances:

For me, with complex children, goals are often around being comfortable during the day and when they sleep so that they can participate in their education. Whereas, working with ‘mild to moderate’ children, it is about participation. For the child ‘to be part of normal society’, joining in activities, looking after themselves and having as much independence as possible.

F1

Concerns were expressed that (mistakenly) aligning the concept of participation with notions of ‘normality’ and ‘mainstream’ life could mean that therapy interventions had unhelpful objectives, and may incorrectly appear to be effective:

You might suggest that because they are attending a mainstream school they are participating as typically developing children. But actually sometimes you might find that a child finds it easier to interact in different educational provision [where] they aren’t as different.

I2

So sometimes participation goes along with inclusion, and everyone thinks they need to make sure little Jonny is going to a group where all the other children don’t have additional needs. But actually a lot of families like it when there are other children with similar difficulties. Families find it very supportive for themselves, and often their children [appear to] really enjoy it as well.

Z1

The need for individualistic, child-centred approaches to defining participation

The argument was made that it is critical not to make assumptions or be prescriptive about what participation is, or represents, for an individual child. The importance of finding out children’s own goals and aspirations was seen as a central and, indeed, fundamental requirement when defining participation outcomes. It was, however, acknowledged as highly challenging among some populations.

Does the concept work for all groups of children with neurodisability and for all therapy interventions?

Leading on from the previous point, some interviewees expressed the view that further work was required on what participation means, and what participation outcomes are, for certain populations. This included neonates and very young children, children with disordered states of consciousness, children with profound and multiple disabilities, and typically developing children with a recently sustained severe brain injury.

Operationalising participation as an outcome indicator

Body structure, functioning and activities

It was clear that the majority of study participants believed that outcomes related to the other ICF constructs of body structure and functioning, and activities, remained salient and should not be abandoned: ‘You have to think across the breadth of the ICF’:

Looking at the therapist who is working on stopping a joint contracture, this may not make any difference to the child’s life. [But] it may reduce pain around the joint, which is crucial . . . and [now] this same child isn’t in pain and has a few centimetres’ movement round the joint. [But] this doesn’t mean the child can then go to the playground and play a game. Whereas, if the therapist helps the same child use a trike, then the child can get over to the other side of the playground and have the opportunity to play.

U1

One interviewee referred to the stance that participation should be the only identified objective of any therapy interventions as a case of the ‘pendulum swinging too far’; it was believed to have led to a dangerous imbalance between what was understood as therapy and reference to body structure and function being seen as ‘taboo’. Indeed, there was agreement among many participants that when a therapy intervention was (appropriately) directed at a specific impairment of body structure/functioning (e.g. pain, cardiovascular fitness or muscle tone) or activity (e.g. handwriting), measuring outcomes in these terms could be more appropriate and legitimate, and certainly when evaluating outcomes in the shorter term.

Parent-level outcomes

All of our study participants talked about children in the context of a family, and the discussion was sometimes as much about the work therapists did with parents as about the work they did with the child. This was particularly the case when a child’s physical functioning was severely impaired and ‘recovery’ (or a return to previous levels of functioning) was not an appropriate outcome.

Parental well-being was the global outcome that interviewees typically identified as the most salient in terms of capturing the impacts of a therapist’s involvement with a family. This was usually explained as being the consequence of a number of intermediate outcomes, all of which therapists identified as objectives that they might work towards with a child and their family. These outcomes included:

• adjustment to the child’s diagnosis or impairment

• having appropriate, but aspirational, expectations for their child

• knowledge and understanding of their child’s condition

• perceived emotional and information support needs being met

• understanding of the alternative ways to support their child achieving their goals, which may not follow the more traditional approach of intensive work on body structure and function

• feeling comfortable and sufficiently skilled: these constructs, which capture notions of self-management, were discussed both in terms of a general sense of confidence as the mother or father of a child with neurodisability, and with respect to the work they did as parents to support their child’s development, functioning and participation in the context of physical (and sometimes learning) impairment:

A key role of the therapist is to enable the parent to be an effective therapist, and parents can only do that if they’re feeling ‘buoyant’. Therapists can help parents take pleasure in their child . . . to help parents see and celebrate the progress they can make.

V1

We often see children with CP [cerebral palsy], for example, who are GMS [gross motor skills] level 4 or 5, but the family are still working on goals around standing or walking and things like that. You often need an experienced positional therapist to say actually these [other goals] are the right things we should be working on, and guide the families in that sense. So they are very integral in setting the right outcome, the right goals, for families.

Y1

Importantly, interviewees often expressed their belief that parents’ outcomes moderated, or mediated, children’s outcomes:

Children’s physical mobility does impact on their participation and life choices, but as important is the family’s attitude to their child and what limitations they presume on that child.

V1

Child-level outcomes

In addition to body structure and function, activity and participation outcomes, constructs regarded as relevant domains for the evaluation of physiotherapy, occupational therapy and speech and language therapy in terms of children’s outcomes included emotional well-being, quality of life, acceptance of impairment and engagement with therapy. It should be noted that, during our discussions about outcomes, interviewees dwelt or expanded less on these other child outcomes. It is our view that this may reflect the confusion around what participation is, and is not, with the assumption being that, having discussed notions of children’s participation quite widely [see Chapter 6, Understandings of the active ingredient(s) of therapies], their focus shifted to parent-level outcomes.

Interventions regarded as having stronger evidence

Frequent reference was made to a recently published systematic review6 of interventions for children with cerebral palsy. This review used a ‘traffic light’ system to grade intervention effectiveness as follows: green represented ‘do it’, yellow represented ‘probably do it’ and red represented ‘do not do it’. However, views about this were mixed. Some believed that it offered a very helpful ‘line in the sand’, whereas others criticised it. Specifically, its reliability was questioned as some of the interventions included in the review were poorly described. The example of ‘home programme’ was mentioned by several interviewees:

While Novak [referring to systematic review6] is meaning a home programme [that is] based on a holistic, comprehensive and significant package of intervention in the child’s home that involves goal setting and demonstration [. . .] in general day-to-day NHS practice, a home programme means something quite different.

L1

Thus, overall, there was limited consensus as to which aspects of therapy practice were more evidence-based.

[For information, interventions relevant to this scoping study that received a ‘green light’ in the above systematic review were bimanual training, constraint-induced movement therapy, context-focused therapy and occupational therapy after botulinum toxin. A further few were graded green or yellow: fitness training, goal-directed training or functional training, and home programmes (for improving motor function or self-care). All other therapies reviewed were given ‘red light’ status.]

Professional expectations regarding evidence-based practice

In order to practice, therapists must be registered with the Health and Care Professions Council, the UK regulatory body responsible for setting and maintaining standards of professional training, performance and conduct. In addition, most therapists are registered with their relevant professional body – RCOT, CSP or RCSLT – although this is not compulsory. Therapists’ engagement in evidence-based practice is an expectation of the Health and Care Professions Council and the three professional bodies: as one participant said, ‘it is in our job description to look at the evidence base’ (T2).

Research training opportunities

Interviewees did note, however, that in recent years there has been a shift in thinking in both pre-registration training curricula and continuing professional development strategies. For example, research knowledge and skills have become part of pre-registration therapy programmes. Thus, therapists trained more recently are likely to be better equipped to engage in research activities and take research forward. However, as a number of interviewees noted, if these skills and knowledge are not built on and developed, confidence in research abilities is lost.

Some practitioners questioned how they were supposed to acquire research skills without ‘jumping two feet into a master’s’ (U2). Among some interviewees there was an anxiety about their lack of research skills, but no easy route was identified to begin developing those skills:

We do it as a team, we are constantly worried about it all the time, and feels like we could be doing more but don’t have those skills and don’t know where to get them from without signing up for a heavy commitment.

U2

For those able to make a commitment to pursue postgraduate training, the NIHR Fellowship Programme was praised for the opportunities it gives therapists who want to do this. However, other opportunities for therapists to study for master’s qualifications were, according to study participants, becoming few and far between owing to the financial pressures involved in releasing someone from clinical practice:

What worries me now is that with the funding squeeze in the NHS, we’re being squeezed and squeezed and squeezed and where we had the opportunity to send people on these [master’s] programmes, it may be more difficult in the future.

T2

Consequently, the only route open to those wanting to engage and develop their skills in research was to leave clinical practice for academia. This was regarded by some as reinforcing a gap between research and practice.

Time for research

Many interviewees noted the lack of protected time for research activities, whether this was to keep up to date with the research evidence, to take part in research-related activities or to write research proposals and submit bids for research funding. All agreed that clinical teams within NHS community and acute trusts were under a lot of pressure to meet their clinical demands and so there was little or no time left for research. These pressures, it was generally recognised, were increasing with recent austerity measures:

. . . we haven’t got enough posts to do the work and have free time to do the extra bits like research. So the pressure is very much you’ve got to do your caseload, you’ve got to do this, you’ve got to do that.

H2

Nobody’s going to want to do research if they’re going to have to add it on to what they are already doing. They don’t have time to even do what they need to do . . . they are in survival mode.

Q1

The constraints on therapists’ time were also referred to in the context of involving therapists in research, and it was felt that this situation would not change. Thus, clinical academics taking part in this study reported that, to engage with and support studies, therapists may have to squeeze appointments and/or do this work out of hours.

We have managed to do some research locally but it has been very much dependent on people’s goodwill; and unfortunately in the NHS at the moment, there’s less of that around.

Z1

Wider views about therapists’ engagement in research

Some interviewees (including therapists and paediatricians) believed that research may be actively discouraged among middle and senior management. It was neither valued nor perceived as a part of the therapist’s role:

[. . . They say] ’it’s not your job to do research’ kind of thing.

U1

One participant (a therapist) described the resistance to their research they had encountered from managers who argued that it did not fit into clinical practice. Others talked about having to ‘push’ to do research rather than it being the other way around, with managers reluctant to invest in research training or provide time for research opportunities.

However, in settings where there was a stronger culture of research, therapists described undertaking their own research projects. Experiences of support from local NHS research and development departments were variable.

The limitations of existing evidence

Some therapists commented that many children in their care had multiple disabling conditions and comorbidities and that this was not reflecting in existing evidence:

. . . So it’s finding evidence that actually reflects that complexity.

C1

The challenge of staying up to date

The wide variety of children on a caseload had implications in terms of the volume of research with which a therapist may want to keep up to date:

It’s about keeping up to date with the evidence and finding time in a busy clinical job to do that [. . .], timing can be critical when you’ve got a very broad and varied caseload . . . it can be more of a challenge to try to keep up and read across everything.

G1

The role of research culture and infrastructure

Participants reported several areas in which organisational culture and infrastructure facilitated accessing the evidence. Some, for example, talked about an ‘open flow of conversation’ between therapy practitioners that included an exchange of ideas and expertise about the research evidence. This could be discussion and learning through e-mail communication, individual or team meetings, continuing professional development activities or peer support initiatives.

When there was a stronger culture of research within an organisation, journal clubs were reported. These were described as providing an opportunity for groups of therapists to meet regularly to critically evaluate research articles relevant to their therapy practice. Teams not connected with a university or medical school reported that gaining access to journals could be problematic.

Professional and national clinical guidance

Many interviewees described using professional guidelines (developed by their national professional organisation) and NICE guidance. Occasionally, and usually in the larger and/or specialist teams/centres, evidence-based practice guidance was (being) produced for staff.

Professional networks

External professional networks were often mentioned as supporting the receipt and exchange of research knowledge. Many of the networks described to us were organised under the auspices of the three professional bodies (RCOT, CSP and RCSLT). Other networks reported by therapists as supporting them to stay informed about research and evidence relevant to therapy interventions were the British Academy of Childhood Disability and its European counterpart (the European Academy of Childhood Disability), and the British Association for Community Child Health. Some therapy-specific initiatives to support evidence-based practice were also reported, for example the CountMeIn! initiative within occupational therapy (www.thechildrenstrust.org.uk/count-me-in) and the What Works database within speech and language therapy (www.thecommunicationtrust.org.uk/whatworks).

The individualised approach taken to the delivery of therapy interventions

A key theme in many interviews –with regard to both practice and research issues – was the belief that, to make an impact, a highly individualised approach was required when delivering therapy to a child with neurodisability. This was regarded as a barrier to conducting clinical trials and was a reason why, when opinions were expressed regarding study design, some believed that single subject/case study research was a more appropriate design because it could accommodate this individualised approach:

The problem is bridging these very strict research protocols within the context of the families and children who we actually deal with at a clinical level.

K1

Interventions are not specified

Closely connected to this notion of an individualised approach is the fact that most therapy interventions are not specified: there are no universal protocols or intervention manuals. This was regarded as a significant barrier to rigorous research. In response, some interviewees stressed the need for, or adoption of, systems or frameworks that allowed for a standardised approach to defining the content of an intervention. At the moment, it was argued, quite different interventions might carry the same label:

We need to get down to the content, because the labels mean absolutely nothing.

L1

A further concern was that this lack of specificity meant that intervention fidelity, or adherence, could not be assessed. In addition, within published intervention studies, the impact of poorly defined interventions was regarded as twofold: first, the synthesis of findings in evidence reviews may not be reliable, and, second, it prevents replication.

The context of multiple, simultaneous interventions

Many study participants described the multifaceted nature of the care of many children with neurodisability, especially those with more severe or complex impairments. In these instances, it is likely that a number of professions will be involved and the child may be receiving multiple interventions. It was noted that this may present challenges for evaluation studies, and would need to be controlled or accounted for:

. . . and there might be lots of other therapies that might be coinciding with the treatment. So there might be medical treatments ‘chinking’.

I2

The feasibility of trials

Among interviewees who had some degree of experience of designing or conducting evaluations, trials were usually, although not always, regarded as an appropriate and/or feasible study design for some research questions or objectives. However, many stressed that realist evaluation principles needed to be incorporated into the design of trials so that questions about ‘what works, for whom, and in what circumstances’ could be answered:

I think we need to be changing our methods of analysis to hone down on which children are making the most progress, and what are the predictors of those that did not make progress. Rather than oversimplifying the [analysis] to: did the therapy make a difference, or not? So I think we could do more than just say ‘Here’s the money for an RCT’, we need to really plot what are the presenting features of the children, and what are the factors that cluster together to support a good outcome?

K1

The potential of non-experimental study designs

Non-experimental study designs were viewed as having the potential to make a strong contribution to the evidence base on intervention effectiveness, and neurodisability per se. Particular reference was made to case studies and long-term cohort studies. Such designs were viewed as a potential solution to the heterogeneity of the population and small sample size, or when the intervention being evaluated was complex:

I think for some complex interventions and for heterogeneous populations, RCTs don’t tell you very much. Because what we’re interested in is not work what works, but what works for whom. So you’re almost at two ends of the scale. Either you need an enormous RCT with scope to look at subgroups with very complex cluster analysis, or you do some single case experimental designs which allow you to say what’s working for what type of child. [I think] we need to make more use of good, robust single case study experimental designs because we’re often looking at kids who don’t fall into neat groups: they’re heterogeneous and can be low incidence. A while ago I was trying to set up a study and was told by a medical statistician there needed to be a plague of cerebral palsy for me to do it. So we need to be more accepting of what are the appropriate methodologies.

N2

With respect to cohort studies, participants highlighted potential opportunities within the newly established Children and Young People Health Services Data Set (http://content.digital.nhs.uk/maternityandchildren/CYPHS). A number of interviewees also mooted the benefits of adopting of the hip surveillance strategy for children with cerebral palsy, which had been implemented recently in Scotland:

Epidemiological data is very important. So if you really want to understand the natural history of a condition like cerebral palsy, we need a large cohort disease registry so you can monitor the progress of children over time and perhaps then compare what interventions they’ve had as standard practice or compare how practice has changed over time . . . that means thinking very long term, rather than short term.

I2

There’s no point looking at short-term outcomes. For participation, you need to look at cohorts in the longer term, so 10-plus years.

X1

A number of interviewees noted the potential value of developing clear protocols for reporting case studies, which, if there was some sort of national repository, would allow the collation and synthesis of evidence. Research investment to support such initiatives, and ensure that they are robust and properly supported, was highlighted by many, from clinical academics through to frontline staff. It was also noted that case studies offered a means by which frontline therapists could actively engage in, and contribute to, research, thereby increasing the research capacity within the profession.

Reflection

Overall, therefore, there was strong support for a mixed research design strategy and approach to evaluating interventions:

All methodologies have pros and cons, but there’s room for them all if they are done well and are saying something important . . . and RCTs can’t always be used in isolation to answer the important questions: they need to be combined with other methodologies, for example, [in order to] find out the perceptions of families.

J1

The final sections of this chapter consider two further challenges: implementing evaluation studies in practice and securing research funding.

Intervention adherence

There was strong consensus that research on therapies has to be practice based, rather than consisting of contrived clinic-based studies of efficacy. The latter, it was felt, do not reflect the true complexity of therapy interventions for children with neurodisability. That said, it was noted that this presented challenges, and ‘intervention adherence’ was one of them. This was described at two levels. First, as we have already noted, many therapy interventions are not manualised, or have no protocol. Second, many interventions are delivered by other people: parents, school staff and therapy assistants. This clearly introduces another source of deviation in terms of adhering to the intervention, or even doing it at all:

. . . so it might be the same principles of therapy, but the dosage might be different, so there’s a lack of consistency in that. [Many of these interventions] . . . are not like taking a pill, the intervention is an investment from people. To standardise that is difficult.

I2

You can give them some beautifully described exercises to do with their child . . . but they [parents] are not [necessarily] going to do them.

Q1

Sample selection and recruitment

Mixed views were presented on whether or not engaging families in research and recruiting them to studies would be a challenge:

Parents are bombarded with and sometimes worn down by paperwork. They have multiple appointments with professionals and so their diaries are full.

T2

Others noted that recruitment to research may be required at a time when families are highly traumatised, for example after they have learned a diagnosis, or after their child has had an accidental and severe head injury. The need for investment in feasibility studies was flagged up:

It’s crucial to acknowledge the reality of likely recruitment difficulties, and also the time you need to build into studies to get through the processes of agreement to take part, which can be lengthy.

P2

Concerns were also expressed that those families recruited to trials may not represent the entire patient group, an important issue given that there was consensus that family characteristics have an impact on an intervention’s effectiveness:

Research participants are often those families who are prepared to engage. But, in reality, we are working with a lot of families who are ‘difficult to reach’ and are not going to attend research appointments and follow-ups. So it is difficult to know what to base the decision-making for those families on.

G1

Evaluations of approaches to therapy

Evaluations of service organisation and delivery

Evaluations of techniques, procedures and equipment

Other research topics identified by parents

Understanding of neurodisability

Understanding therapy interventions

Defining participation

As reported earlier (see Chapter 7), the notion of participation, although widely accepted, was felt by many participants to be a nebulous, or poorly defined, construct. Conceptual work on its definition, and work to describe and understand the mechanisms and processes by which therapy interventions may influence it – directly or indirectly – was regarded as another aspect of ‘foundational research’ that should be prioritised and, once achieved, would support and enable work in other research areas.

One issue some participants highlighted was the need to further specify the different aspects of participation:

I think to treat participation as a single outcome is a bit crazy. We need to break participation outcomes into smaller parts, or it doesn’t really make sense.

O1

On a slightly different note, some interviewees believed that, for some groups of children (e.g. those in minimally conscious states, babies and very young children), there had been little thought or debate about the meaning of participation. These participants prioritised research in that area.

There was strong consensus that, in carrying out work on this topic, there needed to be extensive and close work and consultation with parents and children.

Evaluation of overall approaches to therapy interventions

In Chapter 4 we described the shifts in thinking regarding therapy objectives and ways of working currently taking place across physiotherapy, occupational therapy and speech and language therapy. A number of research priorities were identified relating to the evaluation of these emerging approaches. Such research had two overall objectives: first, to establish whether or not they ‘worked’, and for whom and in what circumstances, and, second, to identify the best ways to implement and to deliver them. A number of diverse questions about the overall approach to therapy interventions were identified.

• When should a child be accessing therapy interventions?

• What supports families’ engagement in therapy interventions and notions of self-management?

• What practices, or ways of working, best support children, young people and families to effectively engage in goal-setting?

• What practices, or ways of working, best support a consultative model of delivering therapy interventions?

The evaluation of service organisation and delivery

The second area of evaluation studies identified as research priorities concerned the organisation of therapy, and neurodisability services more widely. Studies in this area were frequently identified as a priority for evaluative research. The types of issues raised within this topic area include:

• effective multidisciplinary team-working

• multitherapy versus unitherapy teams

• care pathways

• the impact of skill/band level of therapists on intervention outcomes

• the relative effectiveness of the consultative role versus the therapist having closer direct involvement in the delivery of therapy

• the relative effectiveness of therapists versus others (e.g. parents and school staff) in the delivery of interventions

• alternative approaches to assessment.

Interviewees involved in reformulating the organisation and delivery of therapy services in their locality typically identified the role of research in informing strategic decision-making and implementing change:

How do you identify family priorities and make sure that professionals bond to them in an integrated way?

L1

There’s plenty on the policy agenda about what we should do, but there’s not a lot of help, guidance or models for how we deliver it. So, how do we integrate effectively? Often the focus is on effectiveness research for clinical intervention but we also need effectiveness research around service delivery and implementation of interventions.

L1

The Trust get more money if we do face-to-face stuff with the child. But as soon as you take the child out of the equation, there is not as much funding . . . for going and sitting with the parent and discussing the logistics of getting to somewhere or whatever, which can be as useful to the child as spending time with them.

C1

Some topics related to service organisation, or ways of working, stemmed from changes to the way therapy interventions are being conceived and delivered. For example, in response to therapists increasingly assuming a consultative role, in which they ‘upskilled’ and supported others (parents, school staff, children and young people) to deliver interventions, some interviewees nominated research into techniques to improve the way therapists approach and deliver a consultative role. Here, comparative evaluations of consultative versus direct work approaches were mentioned, as were realist evaluations that provided evidence on ‘what works, for whom and in what circumstances’.

I think it would be great to have some research around what is the right intensity for doing things. Does therapy always have to be delivered by a therapist? Does is matter who’s delivered it, provided it has the child’s needs as its focus.

PHY-PB-02

Another area of interest for future research was the evaluation of a multidisciplinary care pathway, something that is beginning to be introduced in some localities:

There are lots of clinical pathways and packages of care now and it’s the way the NHS is going. It would be good to compare what different areas have in place for certain levels of need because everywhere is developing their own approach. This sort of approach comparison would help to support ‘what works’ well.

F1

Finally, research was called for that evaluated alternative methods of assessment. This was suggested as being useful in terms of supporting and informing the wider changes taking place across the professions. Specifically, interviewees identified a need for research in two areas: first, whether diagnosis per se was a useful construct around which to structure the care pathway, and, second, whether referral criteria and assessment should align more directly with functional impact and goals for different life domains or activities (e.g. mobility, social integration and self-care) as opposed to diagnostic or impairment criteria. Such an approach was regarded as having the potential to drive and support goals-focused working:

In some ways I think it’s more useful [for practice] to be looking at service criteria rather than diagnosis. So, focusing on finding out the functional impact for the child and whether the impact is sufficient for service support. Focusing on diagnosis means that waiting lists are long and we end up having a lot of services which are more or less assessment only, because by the point of diagnosis their resources are more or less used up. So [then] the child or family get a few activity ideas or suggestions, but therapists can’t work with them because they have no resource capacity left.

N1

The evaluation of specific techniques, procedures and equipment

In this section we report the research priorities related to the evaluation of specific techniques, procedures and equipment used by physiotherapists, occupational therapists and speech and language therapists. A wide range of specific interventions was nominated. Within this, there was a breadth in terms of the populations identified for whom evidence on intervention effectiveness was needed. Importantly, there was no clear indication of a body of support for research on, for example, a particular technique. Rather, research priorities in this area appeared to derive from personal or clinical interests and experiences. As a result, we do not specify any particular techniques, procedures or equipment here, and instead report on some key principles and overarching issues.

The involvement of children, young people and their parents

There was a strong and consistent view that it is essential, both in terms of setting research agendas and within specific projects or programmes of work, that children, young people and parents are directly and actively involved in meaningful ways:

We need to have parents and children from the outset of a research idea: a collegiate approach . . . And not just using the ‘usual group’ of parents who are consulted.

G2

They were involved in the JLA exercise but they need to be embedded and involved at every step.

W1

A number of interviewees noted the challenge of finding ways to involve children and young people who had severe impairments, including learning difficulties, in research:

It’s a huge struggle to involve in research in a meaningful and proper way people who have severe cerebral palsy.

Q2

Further devices to support research prioritisation

Some ideas or suggestions were offered as possible devices by which interventions could, or should, be used to prioritise research.

The research approach

Qualitative research methods were used to gather data to address these objectives. Professionals and parents participated in the study. Unfortunately, despite extensive efforts, the team was unable to secure the involvement of children and young people. We have already noted the importance of further work to allow children and young people’s voices to be heard.

Individual interviews and focus group discussions were held with therapists (frontline and service leads/managers) and included those working in private practice, those active in the research in this field, representatives of the therapies’ national professional bodies, professionals based in schools, and paediatricians. In recruiting to the study, we experienced extremely high levels of response and engagement with the study objectives.

Some overall impressions and comments

This scoping study has engaged with a highly complex and wide-ranging topic area, and one in which there are some sensitivities. The team who worked on the study are applied social scientists and none held any relevant professional qualifications. Although experienced in working on studies of this nature, and on the topic of childhood disability, they had not previously engaged closely with physiotherapy, occupational therapy and speech and language therapy. The ‘external’ nature of the team was referred to by many study participants, and this was consistently viewed positively as an indication of the team’s neutrality and independence.

As is clear in our report of the study findings, physiotherapy, occupational therapy and speech and language therapy are complex interventions. This study was concerned with their use with the highly heterogeneous population of children with non-progressive neurodisability. A further layer of complexity is the fact that there are multiple ways in which therapists may ‘work’ with a child with neurodisability. This made conducting a relatively brief piece of research – but with wide-ranging objectives – challenging, and decisions had to be made about the level of detail which could, or should, be usefully obtained. Furthermore, study participants sometimes held quite different and contradictory views.

Another finding was that physiotherapy, occupational therapy and speech and language therapy appear as professions in a state of change, even (r)evolution. As one would expect to find, there are mixed feelings, and sometimes strong views, about this: both for and against. We also observed both caution and impatience with regard to the changes under way. We believe that it is good and appropriate that this study has represented these different views and opinions. We also know that some of the changes reported were caused by externally imposed factors: principally, significant losses of NHS funding and resources. To a greater or lesser degree, therapy professionals felt beleaguered and under threat.

For these reasons, we have taken the approach of presenting the study findings in a very descriptive way, using verbatim quotations to illustrate the findings reported. This aligned with study objectives to offer a description of the current situation and understandings regarding therapies for children with neurodisability, and to elicit and report priorities for future research.

Study limitations

A key limitation is its failure to recruit children and young people to the study. We therefore cannot present data on their views on outcomes, perceptions regarding the active ingredients of an intervention, and research priorities. This is a significant omission and should be borne in mind when considering the implications of the study findings. Additional work will be required to secure the views and perspectives of this group; the findings from this study may well form a useful resource from which to build consultation tools and materials.

We would note that extensive efforts were made to recruit children and young people, and the research team has successfully recruited this population to many studies. Thus, this failure cannot necessarily be attributed to a lack of effort or insufficient experience. We have already drawn attention to the experiences of other researchers who have sought to include children and young people in research prioritisation exercises: it is possible that the rather intangible nature of projects of this study, compared with other health services research topics, makes participation in studies of this kind less compelling or meaningful.

A second limitation to the study is that the perspective of teaching/education professionals was limited to a single participant. Certainly, it is clear that schools are an environment in which much therapy is delivered, often by teaching assistants under the supervision or direction of a therapist or therapy assistant. Other studies have described a lack of knowledge and understanding of therapy interventions among teaching staff and negative or ambivalent feelings about therapy interventions and equipment. 41–46 These findings support the need for consultation with school staff, and therapists working in these settings, when refining research questions concerned with the models of service provision which may well include the provision of therapies in school settings. Linked to this, we would note a recently completed NIHR study within the Research for Patient Benefit programme, which evaluated training school staff (and parents) in postural care. 47

In the remainder of this chapter, we return to the study objectives, reporting for each the key findings and broad conclusions that can be drawn.

The organisation of therapy services and service models

First, we described the ways in which therapy services are organised, and how they interface with, or are connected to, other services for children with neurodisability.

Predominantly, reference was made to other health services; however, the interface between health and education – particularly the delivery of therapy, or the implementation of therapy interventions, in schools – was regarded as a key issue. In addition, parents were identified as often playing a key role in implementing therapy programmes. To date, the role of ‘non-therapists’ in the delivery of therapy interventions, their experiences and its impact has been studied in a limited way. A number of barriers to implementing therapy regimes in school settings have been identified and reported, including issues of staff knowledge and confidence. 41,45 It has been suggested that parents may vary in their willingness and/or capacity to assume the role of ‘co-therapist’. 48–51 Notions of feeling overburdened by the requirements of a therapy regime, and a lack of ongoing training and support, have also been reported. 52 In terms of work within the existing NIHR portfolio, a study47 funded as part of the Research for Patient Benefit programme has been recently published, which evaluated a training intervention for parents and school staff on postural management.

Different models for organising therapy provision were reported, and alternatives to the traditional model of ‘unitherapy’ teams were presented. These included joint/multitherapy teams and integrated, multiprofessional teams. Transdisciplinary teams were also described, with therapists working across disciplines and/or one therapist acting as primary provider for all therapies to the child. Finally, therapist-led services, operating without referral from a paediatrician, were reported. Often, multiple factors were driving, or informing, the development of alternative service models. Certainly, resource constraints played a part, but the responses to these constraints were informed by new thinking about therapy interventions, particularly family-centred and goals-focused approaches. The influence of the ICF model of impairment and disability, which presents ‘participation’ as the key objective of any intervention, was explicitly referred to by study participants.

The use of private practice

Final key themes in Chapter 3 were the issues of private provision and parents identifying and delivering ‘therapy interventions’ themselves. Professionals taking part in the study reported that this was not uncommon, and this was certainly borne out in the experiences of parents recruited to the study. There was consensus that parents turning to alternative sources of provision was an indicator of their intense desire ‘to do the best’ for their child, and the frustrations that they may experience with NHS provision. Parents’ accounts supported these views, as reported in Chapter 5.

Overall approaches to therapy and schools of thought

In Chapter 4, we presented a model by which therapy interventions can be understood. It was argued that specific techniques, procedures, activities, practices and equipment need to be understood in the broader context. This broader context was occupied by two factors: first, the overall approach a therapist brought to the management of a case, and, second, whether the therapist adhered to, or was influenced by, particular schools of thought. We reported the strong, but partial, influence of WHO’s ICF model of disability and health, and family-centred practice, across the three professions.

Thus, there was a belief that the ‘deficit model’ and a focus on the achievement of specific activities were still routinely operationalised, and that goals-focused approaches to assessment and therapy provision were not yet fully ingrained in practice. Indeed, there was evidence of some confusion with concepts such as ‘goals-focused’ and ‘participation’, and differences in the way they were being defined and implemented. In addition, notions of parents and/or children and young people as active partners and decision-makers in the delivery of therapy intervention were viewed as aspirations or ‘work in progress’, as opposed to firmly bedded into practice.

Chapter 4 also described how, a few decades ago, certain schools of thought dominated the approaches taken by therapists. It was clear that some of these traditional schools of thought were no longer regarded, by some at least, as having any credibility. Other schools of thought – drawn from other disciplines or professions – were, however, reported to be influencing current therapy practice. These included cognitive–behavioural, problem-solving approaches; family-centred practice; and evidence-based practice. Importantly, the notion of early intervention continues to strongly guide the management of children with neurodisability.

The practice of therapies

The second half of Chapter 4 reported our findings on what we have termed ‘the practice of physiotherapy, occupational therapy or speech and language therapy’. Here we described and illustrated the key constructs that define these interventions, namely professional autonomy, responsive practice, managing prognostic uncertainty, protocols and pathways, working out of a tool box and mode of delivery. Throughout much of this account, the notion of therapies as, typically, highly individualised interventions has emerged strongly.

In Chapter 4 we referred readers to Appendix 6, which sets out the procedures, techniques and activities that interviewees reported using, or having come across, in NHS settings. This serves to portray the great diversity of practice, but we would stress that this list is, to no extent, comprehensive. The research team’s view is that to map all procedures, techniques and activities would, arguably, be an almost impossible task. Importantly, as Chapter 4 demonstrated, knowing the names of techniques or procedures is not the same as knowing how a therapist is using or implementing them.

In terms of new and emerging techniques, procedures or equipment that appear promising, this was not generally a topic interviewees regarded as important or relevant, as they believed that the priority should be research into existing practices and ways of organising and delivering therapy interventions. However, there was strong support for research that evaluated new and emerging approaches to service organisation and delivery (e.g. multi- and transdisciplinary working; upskilling/cascading skills) and ways of working (e.g. goals-focused approaches, family-centred practice and promoting self-management). We return to the topic of research priorities later in this chapter.

Parents’ experiences of services, reported in Chapter 5, generally aligned with professionals’ accounts of the way in which the majority of therapy services are organised. A predominant theme in parents’ accounts were dissatisfaction with the amount of therapy their child received and the lack of integration across therapies and other interventions. These are not newly identified issues; they have been reported by previous studies and, indeed, have stimulated policy responses. 19 However, we have not been able to identify any recent English research that has mapped this on a scale beyond specific localities. Parental dissatisfaction with the amount of therapy partly reflects the reality of significantly constrained resources for therapies within the NHS, but may also indicate a mismatch in understanding of appropriate levels of intensity in terms of contact with therapists. A strong thread throughout parents’ accounts was a desire to be doing all they could for their children, and this had led some to pay for the services of private providers and/or identify and deliver therapy interventions themselves.

We also explored the impact on parents of the expectation that, particularly in a child’s preschool years, they may assume a significant role in the delivery of therapy. Included in the stories they relayed were themes of guilt, conflict, exhaustion and a sense of working in isolation, all of which have been reported in previous studies. 48,52 In addition, they expressed concerns about the way therapies intruded into their child’s life and prevented the child from doing other activities. They also described their children’s responses to receiving therapy. Here parents focused on sharing experiences of negative reactions, which were attributed to pain, frustration and a desire to be doing something else. Sometimes these reactions were difficult to manage and this was a common reason why parents desisted from carrying out interventions and using equipment.

Therapies as complex interventions

Our opening sections of Chapter 6 presented the notion of physiotherapy, occupational therapy and speech and language therapy as complex interventions,31 and described the existing conceptualisations of the active ingredients of non-pharmacological interventions. We referred to work by McCleary et al. 30 and Bourton et al. 32,33 Both have highlighted the challenges of identifying, defining and measuring the active ingredients of complex, non-pharmacological interventions, and this offers an explanation of why, to date, the active ingredients have been poorly reported.

In essence, the argument is made that the following interconnecting features of complex, non-pharmacological interventions make it difficult and complicated to identify their active ingredients.

• They may have several interacting components.

• Different health-care professionals and other individuals may be involved in their delivery.

• They may be tailored to specific situations or contexts.

• Their success may be dependent on the expertise of the intervention provider.

Much of the remainder of Chapter 6 presented study participants’ views on what constitutes the active ingredients of an intervention, and these are summarised in Figure 4. First, there was clear consensus that a therapy intervention comprises the therapist, the work that therapist does and the work that others do under the training or supervision of the therapist. In terms of the therapist, as reported in Chapter 4, there are various levels of influence in terms of what they ‘bring’ to a case and the ‘work’ they decide to do. This includes the overall approach that they adopt (deficit vs. activity-focused vs. goals-focused) and the influence of particular schools of thought, as well as clinical decision-making processes and the factors that influence them. A further component of an intervention that emerged from participants’ accounts was the ‘therapeutic context’. We used this term to define elements such as the capacity of the wider therapeutic team (e.g. parents, school staff), the setting in which therapy may be delivered, and the access to, and space to use, equipment).

FIGURE 4.

The active ingredients of therapy interventions: study participants’ views.

The final section of Chapter 6 reported professionals’ views on the measurement of these active ingredients. Certainly, both the lack of an understanding of active ingredients, which ones matter most, and systematic ways to describe, record and measure them were identified as significant barriers to future research, both in terms of the design of an evaluation (i.e. which factors, or ingredients, need to be controlled for, or manipulated), and in their execution. We return to this issue when reporting study participants’ research priorities.

Parents’ views

The outcomes identified by parents were consistently located within more global outcomes, such as participation, independence, quality of life and mental well-being. Although these outcomes were global, parents strongly believed in the potential of therapy interventions in supporting their achievement. Thus, improvements in physical functioning, acquiring new motor skills and having access to equipment were regarded as necessary, but intermediate, outcomes to the achievement of higher-level outcomes. These views align closely with other studies that have explored parents’ (and children’s) views on desired, or prioritised, outcomes of health and care provision. 53,54 However, as we reported in Chapter 5, some parents reported that therapists may not explicitly refer to these higher-level goals, and can appear to be focused on specific aspects of functioning, etc.

Professionals’ views

Our report on professionals’ views about outcomes was presented within the ICF framework, which distinguishes between outcomes related to body structure and function, outcomes related to the achievement of particular activities and outcomes that can be defined as being aligned with notions of participation. As reported in Chapter 4, the ICF framework16 and the concept of participation were adopted by the professions a number of years ago, although understanding of the meaning of the concept varied. Certainly, the term ‘participation’ was spontaneously offered as one of the main objectives of any therapy intervention, although we must be cautious about the consistency of definition applied to this term. The specifics of definition aside, participation was consistently regarded as a complex and multifaceted concept. Furthermore, it was clear that some study participants felt that further critical, conceptual work was required to clarify its definition, and the way in which it should be operationalised by the therapies.

Some helpful developments to the concept were, however, offered during our interviews. First, it was stressed that participation could sometimes simply be about opportunity (and choice), and, second, that it should include notions of ‘ease of participation’, and not just participation per se. There was also a clear view that participation had to be something defined by the child and/or their wider family, and that assumptions should not be made about what constitutes participation for an individual child.

Another thread in our discussions with professionals were concerns about the extent to which participation can be operationalised, or applied, to some groups of children with neurodisability, including neonates and very young children, children with disordered states of consciousness, children with multiple and profound disabilities, and typically developing children who have recently sustained a severe brain injury.

Participation as an outcome measure

A second, separate question explored in our interviews with study participants was to ask whether participation is an appropriate or meaningful concept to use with respect to the evaluation of interventions. A number of significant issues were raised and we will not rehearse them fully here. However, four key issues or concerns were raised. First, therapy interventions are often one aspect of a multifaceted, multidisciplinary programme of interventions that a child may be receiving. Second, any evaluation of intervention outcomes needs to take account of the impact of any age-/development-related changes in the child. Third, it was suggested that although participation should be the end point, or overall goal, a therapy intervention’s role in achieving this may come early on, in order to secure intermediate outcomes on which other interventions can build. Finally, questions about the appropriate time to ‘measure’ participation were raised, which in turn led interviewees to point to the myriad of other events and circumstances that may intervene in a child’s life before participation-related outcomes are investigated.

There was greater engagement with the notion of participation as an outcome indicator if the evaluation concerned the whole approach of services, or particular service models. However, questions about when, and what, to measure were still raised, and similar arguments rehearsed regarding the challenges and complexities of outcome measurement. A recently completed NIHR HSDR project55 on meaningful health outcomes for paediatric neurodisability – incorporating the collection and collation of the views of families and professionals, as well as a systematic review of existing outcome measures – makes an important contribution to moving forward on this issue. In addition, a similar project but specific to young children with autism has also been published recently. 56 Both of these studies identify measure development work as a research priority.

Goal attainment scaling

Given the move towards goals-focused approaches to therapy interventions, goal attainment scaling was suggested as an approach that had the potential to capture participation-type outcomes that may be more directly attributable to a specific intervention. It was also regarded as having the potential to be implemented routinely, and, if standardised and used routinely, could lead to the development of very useful data sets for cohort studies. To date, this approach has predominantly been confined to adult rehabilitation,57 although its use in paediatrics has been critically evaluated. 58 This latter piece of work called for more research into the reliability of goal attainment scaling within the paediatric context. A useful piece of work going forward would be to review evidence on this.

Finally, before this discussion is concluded, it is important to return to the issue of multiple definitions and understandings, which introduced this section. Readers need to be mindful that interviewees’ views on participation as an appropriate and meaningful outcome indicator will be based on their understanding of this concept.

Other child outcomes

Interviewees readily identified other outcomes that they believed to be appropriate and meaningful, and that should be considered when designing evaluations. These included measures of body structure and functioning, engagement in/achievement of activities, emotional well-being, quality of life, acceptance of impairment and engagement with interventions.

Parent outcomes

Outcomes for parents were also strongly emphasised. These were regarded as legitimate indicators of the impact of a therapy intervention. The parent-level outcomes suggested included quality of life, resilience, emotional well-being, perceived emotional and information support needs met, confidence in skills and abilities, and knowledge and acceptance of child’s impairment. Certainly some of these outcomes map well on to other research, referred to earlier in this discussion, which has explored parents’ experiences of delivering therapy interventions. 41,48,52

Views about the need for research

Chapter 8 began by reporting widespread acceptance and agreement that the current evidence base on therapy interventions for children with neurodisability is very limited. This very much concurs with the wider accepted view of the current situation1,6,59 and therapists’ views on the barriers to evidence-based practice. 60–68 These findings are not unique to the therapy professions investigated in this study, and have been reported across a wide range of health-care professions. 64–66 Furthermore, and as other studies report,61–63 the applicability of existing, higher-quality evidence (derived from studies not conducted in routine practice or clinical settings) was questioned.

This lack of evidence was generally viewed as causing variability in practice and models of service delivery, and inequity of provision. It was also seen as hindering professions’ abilities to argue their case for sufficient resources from commissioners. Some therapists also reported concerns about whether their practice, or that of others, was always ‘the right thing’ for the child.

Overall, therefore, there was strong support for research into therapies for children with neurodisability. However, this was sometimes tempered by concerns about whether or not it was possible to show that therapies make a difference. The notion of evidence-based practice was typically referred to as a ‘good thing’, and is enshrined within professional standards. However, sometimes there was a concurrent rhetoric about the importance of clinical experience and professional autonomy within the clinical decision-making process. Viewing clinical experience as being ‘at odds’ with a notion of evidence-based practice – an issue also identified by previous research61 – is perhaps a reflection of a common misunderstanding of this concept. 67 The true meaning, or application, of evidence-based practice is one in which existing research evidence is applied in the context of clinical experience and the patient’s values and preferences. 40 A range of views on the relative value of high-quality research evidence compared with clinical experience is something some other studies have also reported, with recency, level of training and characteristics of the workplace (e.g. university hospital vs. services unconnected with academic/research endeavours) being found to influence an individual’s viewpoint. 61–63

Research infrastructure within the therapy professions

There was a strong consensus that, currently, the majority of therapy services could not be described as research engaged or research active. Furthermore, time for research is not routinely incorporated into roles; indeed, engaging in research may not be supported by service leads or managers. Opportunities to review and discuss research evidence (e.g. holding journal clubs) were not widely reported. They appeared to be most likely to be located in services based in, or linked to, university hospitals. Instances of services actively seeking evidence to inform their practice and service development were, however, described to us. We also learned about a service (non-NHS) that had invested in research posts, which focused on both developing evidence-informed guidance and initiating primary research.

Interviewees noted that, in the past, research had not been part of the training curriculum but that this has changed over the past decade. However, although more recently qualified therapists might have had some exposure to research and research methods during their training, there had been little opportunity to pursue this. That said, it was reported that within continuing professional development provision, there had been a growing focus on research. Finally, there was a sense from participants’ accounts that there is a potential disconnect between current research activity and frontline therapy services, with much existing research being led from academic institutions.

This description of the research infrastructure within the therapy professions aligns closely with findings from other studies, carried out in England and other countries. 60–63

Perceived challenges of designing and conducting evaluative research

Study participants readily identified challenges with evaluating therapy interventions and a minority believed that these were insurmountable. Most regarded them as issues that may themselves need to be researched. The challenges identified included the heterogeneous nature of the population, the nature of therapy interventions, research design issues, the challenges associated with implementing evaluation studies and the requirements of funders. The main message arising from these debates was that evaluations of therapy interventions will require a range of study designs and methods, and a willingness on the part of funders to both invest in non-experimental designs and be cognisant, but accommodating, of the challenges of implementing experimental study designs when evaluating highly complex, non-pharmacological interventions.

Parents’ research priorities

The majority of research priorities identified by parents aligned with issues relating to the design and delivery of therapy provision and ways of working. Thus, parents called for research that supported and informed integrated care, goals-focused approaches and empowering parents. They also wanted research to be carried out that compared ongoing with episodic models of care, and studies that identified when children and young people should be receiving therapy interventions and/or have the intensity of these increased.

Some parents also identified specific intervention (e.g. should a technique or piece of equipment be used at all?) or had questions about dose or intervention intensity. However, no specific techniques were consistently mentioned by parents.

Professionals’ views on research priorities

Among our interviews with professionals, a wide range of research priorities were identified, not all of which were concerned with the evaluation of therapy interventions for children with neurodisability. We categorised their research priorities as follows: methodological research (reported in Chapter 9), and foundational, or underpinning, research and evaluation (both reported in Chapter 10).

Participants’ suggestions about methodological research included recommendations for feasibility studies, methodological work on trial design, investigating other study designs – particularly cohort studies and case studies – and the possibilities for establishing endeavours using these approaches, and, finally, outcome measures and outcome measurement.

In terms of foundational research, first, the case was made for the need to secure a better understanding of neurodisability per se and the trajectories of different conditions. This reflects the great range of children and conditions represented under this umbrella term, the fact that the impairment has a neurological origin, the relative infancy of the academic discipline of neurodisability, and, arguably, the lack of investment in research on this particular population. Second, some interviewees prioritised the need for research that would develop understanding of therapy interventions. The topic areas for this ranged from the mechanisms of change and active ingredients of interventions to families’ and practitioners’ beliefs and understandings. (This was also an area that was raised by participants of the JLA’s research prioritisation exercise for children with neurodisability1 but was not taken forward to the actual prioritisation because it was outside the scope of that particular piece of work.) The third area of ‘foundational research’ was work on further defining the concept of participation.

In terms of evaluation research, the research priorities identified can be split into two broad categories: the evaluation of overall approaches to therapy interventions and the evaluation of specific treatments, procedures or items of equipment.

In terms of overall approaches to therapy interventions, the following types of question were posed:

• When should a child be accessing therapy interventions?

• How should therapy services be organised in order to achieve the best outcomes for children (and parents) in both the short and the longer term?

• Do goals- and participation-focused approaches improve children’s outcomes, and how can they best be implemented?

• What practices, or ways of working, best support a consultative model of delivering therapy interventions?

• What supports families’ engagement in therapy interventions and notions of self-management?

• What practices, or ways of working, best support children, young people and families to effectively engage in goal-setting, and why?

Often questions of cost and cost-effectiveness were included in study participants’ discussions about these issues.

Regarding specific practices, techniques, procedures and equipment, a wide range was nominated as priorities for future research. None was mentioned consistently, reflecting the fact that these suggestions often appeared to be grounded in personal interest or experience. In addition to interventions specific to neurodisability, some interviewees stressed the need for research that evaluated the application of practices or approaches used with typically developing children and young people, particularly for cardiovascular fitness and language and communication development with children with neurodisabilities.

A number of different evaluation questions were posed. Some concerned evaluations of effectiveness per se, whereas others related to testing dose, mode of delivery and therapy setting. Another area of investigation was identification of diagnostic (or other) features that should be used to inform clinical decision-making. Some viewed research into specific practices and techniques as secondary to, or irrelevant compared with, research into models of care and ways of working.

The research priorities identified by professionals and parents generally aligned with those reported by Morris et al. ,1 which were generated from a wider research prioritisation exercise for children with neurodisabilities, although the emphasis is different. The research priorities pertaining to physiotherapy, occupational therapy and speech and language therapy identified by Morris et al. 1 were generally presented in terms of intervention approaches or strategies to improve function rather than research on approaches to practice (e.g. goals-focused working, family-centred practice) or the way in which services are organised and delivered. However, it is important to note that the two pieces of work had different parameters. First, Morris et al. ’s study was restricted to ‘interventions and process’: this was not specifically defined and might not have included the notion that service-/organisational-level issues and characteristics can be understood as interventions in themselves. 68 Second, this study would not have included the identification of methodological or more ‘foundational’ research within its scope. Third, the research prioritisation approach by Morris et al. 1 required the identification of research questions; however, they did report that many of the issues raised during the research prioritisation exercise could not be framed as such.