Respite care and short breaks for young adults aged 18-40 with complex health-care needs: mixed-methods systematic review and conceptual framework development

Definition of life-limiting conditions

The population of children with LLCs who survive to adulthood is rising annually in England. Owing to medical advances, the number of 16- to 19-year-olds with palliative care needs has increased by 45% over the past decade to 1 in 10 young people, with approximately 55,721 young adults (aged 18–40 years) with complex needs living in England in 2010. 1,2 Their needs are diverse, involving complex life-long symptom and medication management, and palliative care. 3 Many of these children and young people die in infancy and childhood, but those surviving into adulthood tend to have degenerative and progressive conditions lasting for many years. This results in complex health-care needs and high dependency on care that is mainly provided by family members, with support from paid carers and health and social care professionals. The duration and frequency of care for these young adults differs from those of adults with terminal illness, who predominantly require care during the last 12 months of life. In contrast, the care needs of young adults with LLCs are longer term and are associated with higher costs that escalate as their condition deteriorates. The increasing proportion of young people surviving to adulthood has consequently placed increasing demands on commissioners and service providers to meet their complex needs as they transition to adult services. 1,3

Over 300 diagnoses are encapsulated within the population of children and young adults with LLCs, which can be grouped into the following four broad categories:4

1. Life-limiting conditions where a cure is possible but may fail (e.g. cancer or irreversible organ failure).

2. Conditions that, although treated intensively over a period of time, inevitably lead to early death (e.g. cystic fibrosis).

3. Progressive conditions where treatment is exclusively palliative and often extends over many years (e.g. muscular dystrophy).

4. Irreversible but non-progressive conditions that give rise to severe disability and sometimes premature death (e.g. disabilities following brain or spinal cord insult or severe cerebral palsy).

Drawing on key terms from the literature and the definition from Together for Short Lives (TfSL),1–4 the UK charity for children, young people and young adults who are expected to have short lives, we have defined a young adult with LLCs as follows:

Young adults with a life-limiting or life-threatening condition, where there is no reasonable hope of cure and from which they are expected to die.

Definition of complex physical disability

Over the last 13 years, the prevalence of children and young people with severe disability and complex needs has risen because of increasing survival rates. 4,5 In 2007, there were an estimated 100,000 disabled children with complex care needs in England, with a projected increase of 50% over the following decade. 4,6 There is therefore an urgent need to gather evidence on the life experiences of this rising population to explore their needs and assess implications for future service demand. 4

There is wide variation in the definitions of disability and severity, particularly compared with definitions used in the adult population. 6 The Equality Act 2010 defines ‘disability’ as a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on a person’s ability to engage in normal daily activities. 7 Complex physical disability can be grouped into the following three broad categories:8

1. sudden onset conditions (e.g. acquired brain injury, spinal cord conditions, peripheral nervous system conditions, multiple trauma)

2. progressive and intermittent conditions (e.g. neurological and neuromuscular conditions, severe musculoskeletal or multiorgan disease or physical illness/injury)

3. stable conditions with or without degenerative change (e.g. congenital conditions, post-polio syndrome or other previous neurological injury).

Complex physical disability is sometimes referred to as ‘severe’ or ‘profound’ disability and may overlap with other health conditions, creating a complex patient profile. These profiles often include learning disability or cognitive impairment; however, this review has focused on health-care needs and the population was therefore restricted to young adults with complex health-care needs due to complex physical disability. Given the variance in definitions of disability between children and adults, we also included complex physical disability arising from cancer diagnosed as a young adult.

For the purpose of this review, we defined a young adult with complex physical disability as follows:

Young adults with impairments and/or physical disabilities due to congenital or acquired physical disability, or major neurological trauma, which require a complex level of physical management and support.

Definition of complex health-care needs

Defining the concept of ‘complex’ is challenging, as it may vary according to setting and perspective. 9 The health-care needs of a young adult population with LLCs or complex disability may range from complex to highly complex. For example, young adults who are dependent on long-term ventilation or have complex drug regimens are often considered too complex for many respite care services, leading to ineligibility for universal respite care and therefore requiring specially commissioned services. The variation in terminology, the spectrum of complexity and inflexibility of adult assessment processes may result in inequality of care and loss of funding for services, including respite care. Therefore, adoption of a broad definition facilitated the capture of all relevant evidence. There is no consensus-based definition of complex health-care needs,3 but it typically refers to physical, mental and/or health needs that vary across the population in different and often multidimensional ways. It has been argued that the term ‘complex’ relates more to the complexity of service provision rather than individual needs, and that the term ‘multifaceted condition’ may better describe the interconnectedness of an individual’s varied health and social care needs. 10 However, complex health-care needs is a term commonly used in the literature and variation between definitions suggest that complex needs can be considered both in terms of breadth (i.e. the wide range of needs) and depth (i.e. the high level of needs). 11 We have therefore defined complex health-care needs as follows:

Complex health-care needs that are substantial and ongoing that typically involve multiple health concerns and require a co-ordinated response from more than one service.

Definition of young adult

There is no universal consensus on the definition of a young adult in the UK. For example, the Ministry of Justice uses the age band of 18–20 years, the National Health Survey for England uses 16–24 years and the Crime Survey for England & Wales uses 18–25 years. 12 UK services do not tend to define respite services by age group and therefore it is important to use a sufficiently broad age range to capture our target population. Services for children with complex health-care needs may be extended beyond 18 years of age, but the upper limit varies by specific service and geographical location. For example, the upper limit is 23 years at Claire House Children’s Hospice (Wirral, UK), 35 years at St Elizabeth Hospice (Ipswich, UK) and 40 years at The J’s Hospice (Essex, UK), with the lower limit for many adult NHS services set at 16 or 18 years. The Care Quality Commission and the National Institute for Health and Care Excellence (NICE) recommend initiation of transition planning when the child is aged 13 or 14 years, although this may vary according to individual preferences. 13,14 Drawing on key definitions from the literature,2,15 feedback from stakeholders, and the profile of known UK service provision and TfSL, we adopted the following definition:

Young adults are defined as people aged 18–40 years.

Current service provision

There are clear differences between child and adult services in the way that respite care is conceptualised, funded and provided. 20 Typically, the term ‘short breaks’ is used in children’s services to encompass all levels of care, whether residential or in the home, and is a key service provided by children’s hospices and some specialist children’s services. 21 Planned respite care in adult services focuses on the need to give the carer a break from caring rather than providing opportunities for the person receiving care, and is typically referred to as ‘respite’ or ‘replacement’ care. The respite care and short breaks provided by children’s services may be inappropriate for young adults and the upper age limit for eligible access varies between providers and commissioners. On the other hand, typical adult services predominantly serve the needs of older people, those with cancer or other terminal diagnosis, and people requiring end-of-life care, rather than fluctuating health conditions and may be inappropriate respite care for young people with complex health-care needs due to a LLC or complex physical disability. 16,22–25 With notable exceptions such as cystic fibrosis and long-term ventilation, adult sector staff in the UK generally have little experience of paediatric conditions or of supporting young adults with complex needs. 3,13,24,26 Limited respite care, particularly for those with highly complex health needs, is available for planned short breaks or emergency family situations once young adults with complex health-care needs have transitioned to adult services. 3,13,27

The definition of ‘residential short breaks’ for young people with disabilities varies considerably between social care authorities, ranging from residential schools, sitting services and day care in the home or other settings, to flexible packages tailored to suit individuals. 6 This is an element of the wider problem of service model variation across health and social care in terms of service definition, commissioning, funding and delivery, even within the same authority. 5 However, estimates from local authorities suggest that only 8 in 10,000 disabled children aged 0–17 years receiving social care services, and 18% of children receiving a service from disabled children’s teams, had received residential short breaks. 6

The nature and costs of respite care may vary considerably, depending on the provider and level of complex health needs to be supported, and estimating costs may therefore be a complex process. Referral, assessment models and procedures may also vary between services and the care required by young adults with complex health-care needs is highly individual. Decision-making and care planning may be further complicated by legal and policy changes associated with the transition to adult services, including the transfer of parental to personal responsibility (unless there are capacity issues), and many families are ill-prepared for these changes. The changes associated with transition may also have an impact on the wider family, for example where housing and welfare support assessments move away from the whole ‘family’ (such as using parental income and other dependents to assess need) to assessment of the young adult alone, with their family largely disregarded in the assessment process. Consequently, young adults may face significant barriers to accessing appropriate care and support as they make the transition to adult services. 28,29 Parents have described the transition process as ‘like falling off a cliff’ when the support from children’s services ends and appropriate adult services are not in place, adding to the complex burden of living with complex health-care needs for young adults and their families. 30

Benefits of respite care and short breaks

The limited evidence indicates that respite care and short breaks may have a broad range of benefits, such as increasing family-carer resilience,27 improving the psychological well-being of parents,16,31 reducing the risk of carer breakdown23,27 and avoiding costly unplanned hospital admissions, a longer length of stay and social care intervention. 32,33

However, most of the evidence on the use and impact of respite care and short breaks relates to children’s services, such as hospices, rather than services for young adults with LLCs, partly because, until relatively recently, so few children survived into adulthood. However, more people with LLCs are now surviving beyond childhood and their needs may increase as they grow older, for example with the desire for independence and the need for support outside the family as ageing parents develop their own health problems. With a rapidly growing population of young adults making the transition from child to adult services, there is growing evidence of poor continuity of care, including respite care provision, that leads to the needs of the young adult and their family being unmet. The consequences of poor continuity of care may include adversely affected social, educational, vocational and spiritual outcomes; inadequate management of complex comorbidities; deterioration in the young adult’s physical and mental health; family-carer burnout; and inappropriate, costly hospital admissions. 24,34,35 Most disturbingly, earlier death may result from poor transition and loss of services. 35

Definition of respite care and short breaks

A systematic review of respite care provision for older people with dementia identified eight models of respite care and short breaks, and characterised services according to duration, pattern of use, location, response (e.g. planned or emergency care) and the characteristics of service users and staff. 36 The types of respite care included day care, home day care, clubs, interests or activity groups, home-based support, host family respite, overnight respite in specialist facilities, overnight respite in non-specialist facilities and holidays. 36 Other types of care, such as emergency residential respite and emergency home-based respite, are also described in the literature. These reflect many of the known service types for young people with LLCs and complex physical disability, illustrating variations in service configuration. It is also likely that other types of care will evolve in response to growing demand.

Following an initial scoping of evidence for the review protocol, we characterised nine service types (Figure 1), grouped into five overarching service categories. However, we note that some providers may offer more than one type of service.

FIGURE 1.

Preliminary types of respite care.

The definition of short breaks and respite care used by children and adult services differ by service type and intended outcomes. More information on the intended outcomes by service types can be found in the logic models that form the conceptual framework for the review in Appendices 8–20. This is partly attributable to the flexibility required to meet the needs of both service users and providers when developing services. Some of the factors that may influence service delivery include:33

• location (e.g. in the person’s own home, at a carer’s home, residential or community setting)

• duration (e.g. for a few hours, overnight, several days)

• timing (e.g. weekdays, weekends, evenings)

• provider (e.g. local authorities, health agencies, voluntary/independent agencies)

• care funding (e.g. use of personal budget, care package, provider or charity funded).

Drawing on the literature and policy statements we used the following definition of respite care and short breaks:

Respite care and short breaks are the temporary provision of formal or informal physical, emotional, spiritual or social care for a dependent person.

Formal respite care is provided by organisations or individuals who receive financial payment, including family carers paid through management of personal care budgets.

Informal respite care does not involve financial payment.

Stage 1: knowledge map of types of respite care services

We identified, catalogued and described different types of formal and informal respite care and short break services for young adults (aged 18–40 years) with complex health-care needs due to a LLC or complex physical disability. We developed an initial logic model for each type of service to illustrate the differences in context, service configuration, populations, implementation and intended outcomes for various stakeholders.

Stage 2: evidence review

We synthesised evidence in method-specific streams and grouped the evidence according to the types of service identified in stage 1, extracted key descriptive information from each source and evaluated methodological quality. Results and recommendations were extracted from each source and synthesised within each evidence stream. We also identified key policies and extracted the policy intent concerning respite care.

Further development and refining the logic models as a conceptual framework

Building on the knowledge map identified in stage 1 and the evidence synthesised in stage 2, we continued to further develop and refine a series of logic models that encapsulated the essential elements and intended outcomes of different types of respite care service provision, forming a conceptual framework for the review, which became a product of the review when fully developed(see Appendices 8–20).

Evidence selection criteria

We defined selection criteria using the SPICE (Setting, Perspective, Intervention/phenomenon of interest, Comparison, Evaluation) framework47 (Table 1).

Search strategy

The investigative team and SG, led by our information specialist (MM), developed the search strategy to identify relevant published and unpublished evidence (e.g. primary studies, evaluations, policy documents). The search strategy was informed by the complexity of the SPICE framework and the need to identify all data from a diverse range of sources. 47 To minimise missing evidence, our overall strategy was to maximise sensitivity of the searches.

We developed an exploratory search using the MEDLINE database. The investigative team and SG identified an initial set of keywords to inform the search strategy and discussed the search structure. The review team also identified a set of key relevant studies and the full text of these studies was analysed to identify additional relevant keywords. The information specialist mapped the keywords to relevant thesaurus terms in MEDLINE. Analysis of the MEDLINE records of key relevant studies identified additional relevant thesaurus terms.

We conducted a sensitivity analysis on the search strategy by comparing the retrieval of different search techniques (e.g. proximity operators, phrase searching and field searching) to develop a search strategy that ensured the retrieval of all key relevant studies. The final version of the exploratory search was adapted for other search sources (see Appendix 1).

We limited the search to evidence available from January 2002 onwards because of significant changes in service demand [including an increase by 45% over the past decade to 1 in 10,1 changes in the law (e.g. Children and Families Act 2014,42 Care Act 201443) and new policy/guidance documents published during the last 17 years]. As the review is specifically concerned with the provision of respite care or short breaks in the UK, we also limited the search to the 35 Organisation for Economic Co-operation and Development (OECD) countries considered comparable, except for evidence relating to stream 4 (policy and guidelines), which focused entirely on domestic policy.

We searched the following sources from 1 January 2002 to 26 September 2018: Cumulative Index to Nursing and Allied Health Literature (CINAHL) (EBSCOhost), MEDLINE (Ovid), British Nursing Index (NICE Evidence Services, Healthcare Databases Advanced Search), EMBASE (NICE Evidence Services, Healthcare Databases Advanced Search), PsycINFO (EBSCOhost), Applied Social Sciences Index and Abstracts (ASSIA) (ProQuest), Health Management Information Consortium (HMIC) (NICE Evidence Services, Healthcare Databases Advanced Search), the Cochrane Database of Systematic Reviews (The Cochrane Library), Database of Abstracts of Reviews of Effects (to 31 March 2015) (Archived by Centre for Reviews and Dissemination), Web Of Science (Thomson Reuters), Trip, PROSPERO, Joanna Briggs Institute Systematic Reviews and Implementation Reports (Wolters Kluwer), Social Care Online and the National Institute for Health Research Journals Library.

To further identify evidence for each specific stream, the strategy was adapted and applied to the following databases:

• Cochrane Central Register of Controlled Trials (The Cochrane Library), International Clinical Trials Registry Platform (URL: http://apps.who.int/trialsearch/), EU Clinical Trials Register (URL: www.clinicaltrialsregister.eu/ctr-search/search) and ClinicalTrials.gov (URL: https://clinicaltrials.gov/).

• NHS Economic Evaluations Database and Health Technology Assessments (Centre for Reviews and Dissemination).

Additional evidence was identified through internet searches (Google and Google Scholar, Google Inc., Mountain View, CA, USA), relevant NFPO websites, hand-searching and consultation with the SG and PAG.

We also searched the International Journal of Paediatric Palliative Care (URL: www.worldcat.org/title/paedpallit-the-international-journal-of-paediatric-palliative-care/) for relevant evidence. All searches were updated in February 2019 and September 2019. For the update run on 18 September 2019, we modified the full search strategy to improve specificity by eliminating redundant terms (see Appendix 2). Sensitivity and specificity of the modified strategy was validated by comparing the new and existing strategies for the update in MEDLINE. Results screened by two reviewers confirmed the same list of included items and the modified strategy was therefore implemented across all databases for the full update search.

Grey and unpublished literature

Results from scoping searches suggested that relevant information was likely to be found within the grey literature (e.g. central and local government evaluations and impact assessments, or unpublished data produced by third-sector organisations). We conducted a broad search for grey and unpublished literature via Open Grey (formerly System for Information on Grey Literature in Europe, URL: www.opengrey.eu/), Grey Literature Report (URL: www.greylit.org), the World Health Organization (URL: www.who.int/en/) and Google. In addition, we:

• asked SG and PAG members to identify relevant known literature

• asked SG and PAG members to identify topic experts, useful websites and organisations to contact (see Appendix 3)

• scanned relevant websites for potentially relevant literature

• targeted topic experts, stakeholders and service providers through a ‘call for evidence’, which was shared through networks, direct e-mails and social media.

In addition to examining the reference lists of included evidence identified through database searching, a purposive and iterative approach to searching the literature was undertaken. The CLUSTER (Citations, Lead authors, Unpublished materials, Scholar search, Theories, Early examples, Related projects)48 approach aims to identify additional relevant outputs that may include a ‘sibling’ paper (i.e. papers from the same study, for example qualitative studies, economic evaluations or process evaluations associated with a randomised controlled trial) or ‘kinship’ studies that inform relevant theoretical or contextual elements. Table 2 shows the key details of this approach, which emphasised the need to adopt multiple search techniques (e.g. citation searching, ‘key pearl’ searching, ancestral searching) to supplement and enhance the main search, and to ensure identification of relevant evidence and grey literature. It aims to identify additional material associated with a study of interest, rather than those simply using the same terminology, therefore overcoming the limitation of selected terminology common to most search strategies.

Where possible, we implemented search alerts in source databases to identify additional relevant studies as the review progressed. Results from the searches of multiple electronic databases and other sources were combined and de-duplicated using EndNote reference management software [Clarivate Analytics, Philadelphia, PA, USA; URL: https://endnote.com (accessed 9 December 2020)] and then entered into Covidence, a web-based systematic review management platform [Veritas Health Innovation, Melbourne, VIC, Australia; URL: www.covidence.org (accessed 8 December 2020)]. The use of a single comprehensive search strategy enabled identification of all potential evidence for the knowledge map and review streams. Included sources were then filtered into the appropriate review stage and review stream.

Stage 1: knowledge map methods

One of the key review objectives was to identify and characterise the different types of formal and informal respite care and short break services provided for young adults (aged 18–40 years) with complex health-care needs due to a LLC or complex physical disability. The criteria for inclusion in the stage 1 knowledge map were less restrictive than selection criteria for inclusion in the evidence review because we were looking for examples of these services (Table 3). To enable inclusion of relevant respite services for our target population, evidence was included if it met the following three criteria: (1) it broadly met the perspective (population) element of the SPICE criteria; (2) it broadly met the intervention (respite care/short breaks) element of the SPICE criteria (see Table 1) and (3) it provided a sufficiently detailed specification of service provision to inform the stage 1 knowledge map. Evidence that did not provide a sufficiently detailed description of services to be included in stage 1 may nevertheless have met the following full SPICE criteria for stage 2.

This process presented some challenges because of the complexity of commissioned services. Many respite services are commissioned for people with a range of different needs and the population mix therefore includes people with other needs as well as our target population. To maximise sensitivity of the stage 1 search and to avoid missing relevant services, we retained a very broad selection strategy at this stage. Mixed populations were included when young adults aged 18–40 years were clearly part of the wider population. Similarly, services provided for populations with a range of needs were also included, providing that young adults with complex health-care needs were part of the wider service population. However, the review focuses on the provision of respite care for young people with complex health-care needs and evidence about services for people with solely educational or social care needs were therefore excluded.

The following information from evidence included in the stage 1 knowledge map (where available) was extracted and logged:

• evidence bibliographic details

• location (setting)

• description of the intervention guided by the TIDieR (Template for Intervention Description and Replication) checklist49

• information on service delivery processes required for programme theory and logic models.

Using preliminary categories published in the protocol as a starting point, and considering the population, timing, location and level of care provision, the evidence was used to categorise distinct service types that were validated following consultation from our PAG and the review SG.

Stage 2: evidence review methods

Evidence was included in the stage 2 evidence synthesis only if it met all of the SPICE study selection criteria (see Table 1). This necessarily meant that some evidence was included in only one of the stages. The evidence included at each stage is reported in the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram (see Figure 3). Sources included in stage 2 were categorised as one of the following four streams of evidence.

Description of sources

The aim of this stream was to capture the main intentions stated in policy and guideline documents for respite care and short break provision for young adults with complex health-care needs, with a focus on issues of access, acceptability, information provision, funding and commissioning of services, joint and integrated working and transition planning. In addition to the searches, sources were identified through consultation with stakeholders, including policy leads for national organisations. Sixty-one sources were screened using the inclusion criteria and then allocated as policy or NFPO guideline or guidance sources for extraction and synthesis [Figure 5 is a Consolidated Standards of Reporting Trials (CONSORT)-style flow chart].

FIGURE 5.

A CONSORT-style flow diagram for policy stream.

Some sources focused on the young person receiving care, typically from childhood up to age 19 or 25 years, whereas adult carer sources focused primarily on the needs of the parent or carer, and used different terms, such as ‘replacement care’ for the person receiving care while the adult carer has a ‘break’. The synthesis of policy intentions presented here does not claim to provide an exhaustive review of every policy change across all four nations that has affected young adults aged 18 to 40 years in the UK, but provides an account of the key policy intentions and implementation guidance, which subsequently informed the analysis in the other evidence streams.

The 20 sources26,30,88–93,98,99,110,111,114–118,128,129,131 comprised eight sources published by the UK Government,26,88–93,99 four sources published by the Scottish Government,115–118 one source published by the Welsh Government,131 one source published by the Health Information and Quality Authority98 (a statutory government-funded agency in Dublin, Ireland), two sources published by NICE110,111 (an executive non-departmental public body of the Department of Health and Social Care in the UK), three sources published by TfSL30,128,129 (a national charity for children, young people and young adults with LLCs in the UK) and one source published by the Social Care Institute for Excellence114 (a UK charity and improvement agency).

Quality appraisal

We had intended to use the AGREE II instrument to assess quality of practice guidelines, but none was identified. The policy and NFPO guidance documents were not appraised.

Findings

The policy included in the review was developed in the four nations of the UK (England, Scotland, Wales and Northern Ireland), although the overall intent is similar across the different nations. Findings from the UK policy and NFPO sources have been grouped by type of intention. Seven emergent areas of policy intention were identified: (1) accessibility, (2) acceptability, (3) outcome-focused services, (4) eligibility criteria and information provision, (5) multiagency and integrated working through and post transition, (6) funding and commissioning and (7) service user involvement.

Summary discussion

There are many legal duties set out in existing policy regarding the commissioning, funding and delivery of respite care and short breaks by local authorities. All nations have similar stated intentions to meet the provision of respite care and short breaks for carers, as set out in the legal framework of acts (e.g. the Care Act 2014),43 although there is some variation by nation in their final documents and accompanying guidance. The legal duties and priorities change in focus between the children-focused policies, which are aimed at the holistic needs of the child and family, and policies that are more directed at provision of breaks for the adult carer. This change in focus is a factor that may affect the provision of appropriate respite for young adults, depending on their NHS continuing health-care status, and may also result in a lack of any support for siblings, unless they are identified as a young carer in their own right.

Since the Aiming High for Disabled Children91,99 programme in 2007/8, there has been little in the way of policy aspirations for young people and young adults that are specifically intended to improve respite care provision or to address the needs of the growing population of young adults with complex health-care needs who find themselves unable to access children’s services. Much of the relevant guidance on addressing these challenges for commissioning and transition has come from NFPOs, such as TfSL. 30,128,129

In England and Wales, the legal duties with the Care Act 2014 set out requirements for early transition planning and future care based on clear assessment and a care plan being agreed to ‘meet eligible needs’, as set out in the Care and Support (Eligibility Criteria) Regulations. 132 Although local authorities do not need to provide a list of services, they must assess and take into account the wishes and preferences of the young adult and make an agreed plan for future support following transition. When the young adult has complex health or disability needs and is eligible for NHS continuing care, there is a requirement for the NHS to provide respite for these young people and young adults and to work with the local authorities to provide appropriate care. When a young adult is not eligible for NHS continuing care, the updated national framework of 2018133 states that they may still be able to receive a joint package of health and social care. Therefore, the NHS is bound to support and fund respite health care if it is identified and agreed as part of an assessment and care plan. 133

The key policy intentions to shape the experience, implementation and delivery of respite care for young adults can be summarised separately for them and their parents, as well as intentions that apply generally. For young adults, good transition planning should start early, at approximately age 14 years, with early assessment and development of a care plan to meet the young adult needs, including respite care and short breaks. In addition, respite care should be provided in a range of services that are age-appropritate and developmentally appropriate and resourced with appropriately trained staff to ensure safe care. For the parents, a carer assessment should be conducted to identify and develop a care plan for their needs, including any personal outcomes that they wish to achieve. Intentions for all include the following:

• Respite care and short breaks to be planned, rather than responsive to a crisis.

• Clear eligibility criteria, charges and information about available services should be publicly available.

• Assessors should know and be confident in discussing the available respite care available during assessments.

• Care should be available at different times and on different days to suit the recipient.

• A broad range of respite should be made available, including holidays, organised social and sport activities, and outings.

• Performance indicators and outcomes should be monitored to identify gaps in provision, data on service use and impact for service users.

• Services from all sectors should work together to develop partnership-based services.

• Service user choice of provider should be supported by the use of short break vouchers or direct payments, where appropriate, but this should not limit effective commissioning, which shapes the market to meet the needs of local young adults and parents.

• Young adults and parents should be involved in the development and delivery of services.

Description of sources

The sources included in this evidence stream are tabulated by respite type in Table 7, which details key sources and level of available evidence for the 13 respite care types identified in the knowledge map. There are several sources that relate to multiple sources or were generic, and so the two categories of ‘non-specific services’ and ‘multiple respite sources’ are also reported in the table. Where the evidence within the multiple services sources could be clearly identified for any of the 13 respite services, this has been noted in the table. Although the knowledge map identified examples of 13 respite care types, not all sources were eligible for inclusion in the in-depth stream 3 evidence review, either because they were not empirical studies or because we could not determine population eligibility because of a lack of information that would have enabled us to discern which evidence related to our population of interest. For example, not all the service types have evidence relating to views and experiences, and no clear evidence was found for three types of respite care (i.e. host family/fostering respite, emergency respite provided in home or hospital and host family emergency respite), highlighting gaps in the current evidence base. A matrix and gap analysis of evidence by respite care type is presented in Appendix 23.

Evidence from 20 sources included the views and experiences of young adults, parents, professionals and service providers on 10 specific types of service and respite services: (1) residential respite in a specialist palliative care facility (e.g. a hospice),27,59,61,67,71,103,106 (2) respite in a residential specialist disability facility (e.g. a camp),62,66,68,72 (3) residential respite in a nursing home,61 (4) home-based day care,60,63,69 (5) home-based overnight respite,60,63,69 (6) day care at a specialist facility,63 (7) organised recreational activities,59,60,66,72 (8) befriending,60,70 (9) funded holidays63,66,72 and (10) emergency residential respite in specialist palliative care facility (e.g. a hospice). 27,67 Six sources22,35,65,73,74,109 gathered information from young adults, parents, professionals and service providers on their views and experiences of respite services as a whole (i.e. a non-specific service).

Characteristics of the sources, including aims/objectives, location, population of interest, methodological information and study funding, are tabulated in Appendix 22.

Sixteen studies were conducted in the UK. Five studies22,35,61,67,103 were described as conducted in the UK, five27,60,61,71,73 were conducted in England, five65,66,70,72,109 were conducted in Scotland and one59 was conducted in Northern Ireland. One source74 covered Northern Ireland and the Republic of Ireland. Three studies62,68,69 were conducted outside the UK (in the USA,62 Australia68 and Cyprus69).

Six22,27,59–61,103 of the 20 sources included participants with a range of LLCs and five sources66,69,71,72,109 included participants with a range of complex health-care needs. Six studies62,63,65,68,70,73 included participants with specific conditions: two sources with Duchenne muscular dystrophy65,73 and one source each with cerebral palsy,62 cystic fibrosis,70 acquired brain injury68 and Ataxia–Telangiectasia. 63 Two sources67,74 focused solely on service providers rather than service users.

A total of 886 service users, parents or wider family members and professionals/service providers participated in 20 studies. The three largest studies were by Martin House Children’s Hospice60 (with 274 service users, parents, and service providers), Mitchell et al. 27 (with 135 participants, comprising service users, parents, siblings and service providers) and Abbott and Carpenter73 (with 109 participants, comprising young adults, siblings and service providers). Four sources22,64,72,94 included 27–100 participants, including service users, parents and wider family. Eight sources35,59,61,63,69–71,109 included the views and experiences of no more than 25 participants (ranging from 10 to 25 participants), including service users, parents and wider family. The number of participants was unclear in three sources. 65,66,72

Of the 886 participants clearly identified in 17 of the studies,22,35,59–63,67–71,73^-75,107,109 472 were professionals/service providers (53%), three were volunteer befrienders, four were paid carers, 220 were parents or wider family members, such as grandparents (25%), 12 were siblings (1%) and 175 were young people/adults (20%).

Seventeen studies reported sources of funding. Five sources35,59,66,72,73 were funded by government bodies, four sources27,60,65,71 were funded by service providers, three sources61,63,109 were funded by charitable organisations, two sources69,74 were funded doctoral theses, two sources67,103 were funded by Clinical Commissioning Groups (CCGs) and one source22 reported that no funding was received. The remaining three studies62,68,70 did not report their source of funding.

Quality appraisal of sources

We assessed the quality of all included studies using the CASP tool53 (see Appendix 22). All of the sources used either a single data collection method or a combination of qualitative methods. Eleven sources22,35,59–61,63,65,68–70,109 used interviews or focus groups. Four sources27,62,71,73 used mixed qualitative methods, such as open-text surveys in combination with focus groups and interviews. Three sources67,74,103 used survey methods alone, which had open questions to gather qualitative data. Two sources66,72 used a range of methods to evaluate services.

Some sources did not report data collection methods, although this does not necessarily infer poor study design. Fourteen studies22,27,35,60–62,67–70,73,74,103,109 were considered valuable research sources. Seventeen sources22,35,59–63,67–71,73–75,107,109 clearly described the research aims and appropriateness of the chosen methods, although this was unclear in three sources. 65,66,72 In five sources,65,66,72,73,103 the participant recruitment strategy was not reported and we were therefore unable to judge its suitability for the research aims. We were unable to determine whether or not data collection was appropriate for the research question in three sources. 65,66,72 The relationship between researcher and participant was adequately addressed by three sources only59,61,74 and ethics issues were reported by 11 sources. 22,27,35,60,61,68–71,103,109 A clear statement of findings was provided by all but three sources. 65,66,72

Findings of the framework synthesis

The synthesis of evidence in the experience stream was guided by review questions 4 and 5 [i.e. ‘What are service users’ and providers’ views of current service provision and the need for new services?’ and ‘What are the facilitators of and barriers to providing, implementing, using and sustaining respite care and short breaks, taking into account the different perspectives of service users (young adults, family members) and providers?’, respectively]. To inform the logic models and to identify concerns of service users and providers, we focused on the optimisation, implementation and delivery of respite care in the context of outcomes. The evidence is presented in two sections (see Section 1: experience and benefits of respite care delivered to young adults and Section 2: facilitators of and barriers to the uptake, implementation and delivery of respite care to young adults). There was substantial consistency in the emergent themes between service types, and so to avoid repetition, the evidence is presented by theme rather than by type of respite care. A summary of the types of respite care services, service perspectives and any evidence on service inequalities that contributed to the theme are summarised at the beginning of each theme. Both first- and second-order constructs from the sources are included in the themes. Where direct quotes from participants are included in the theme narrative, the original participant identifier of the source has been used, if one was provided, and clarification of cohort has been added where needed. Other quoted text includes the authors interpretation of the evidence from the sources.

UK policy and guidance (evidence stream 4)

Twenty sources26,30,88–93,98,99,110,111,114–118,128,129,131 of UK policy and NFPO guidance were included from all four nations in the UK and national organisations (e.g. TfSL). Guided by regulatory and statutory frameworks (e.g. the Care Act 201443) that stipulate the obligations of local authorities providing publicly funded care and support, the intention of service providers was similar across the UK. As children become adults, legal duties and priorities shift from child-focused policies aimed at the holistic needs of the child and their family26,88,90,131 to policies directed at the provision of breaks for carers. 43,93,118 This shift in focus may influence the appropriate provision of respite care for young adults, as it depends on continuing NHS health-care status and may result in lack of support for siblings, unless they are identified as young carers in their own right. We identified seven key features of respite care policy:

1. Accessibility to respite care through early planning and assessment (policy 1).

2. Provision of respite care acceptable to service users (policy 2).

3. The need for outcome-focused services with local data monitoring and performance indicators (policy 3).

4. Clear eligibility criteria and information about the provision of respite care (policy 4).

5. Multiagency and integrated working to support the transition to adult services (policy 5).

6. Equitable and planned funding and commissioning to shape the market and local service provision (policy 6).

7. Service user involvement in the planning and delivery of respite care services (policy 7).

Policy intentions have been mapped on to the main findings of the review to highlight alignment with the experience of service users and gaps in the evidence.

Effectiveness of respite care/short breaks (evidence stream 1)

There was an absence of evidence on the effectiveness of respite care for our population. The lack of quantitative evidence of effectiveness, for example from clinical trials and non-randomised studies, highlights the need for new research. Measuring effectiveness of an intervention such as respite care, which is multifaceted in its mode of delivery, range of stakeholder and beneficiaries, and broad-ranging outcomes, is complex. It is unlikely that one or two outcomes or performance indicators would fit all types of respite care services, and core outcomes may need to be tailored to the specific services. Respite care services should be evaluated in the context of a package of care and support that may include informal services (e.g. recreational activities) as well as formal services, which in turn may influence the impact of the individual components. A range of quantitative outcome measures to establish effectiveness/cost-effectiveness, along with qualitative indicators to characterise the service experiences of young adults and their families, and long-term service outputs to monitor service use and uptake for providers, would capture the impact of services from a number of perspectives. Establishing a set of core outcomes and performance indicators to gather data would allow for comparison and learning across areas, enabling services to demonstrate service impact (policy 3). 26,114 Studies comparing no services with current services or comparing different types of respite care services used by young adults would help to determine which services are meeting policy intentions, delivering their intended intervention outcomes and meeting the outcomes prioritised by young adults and their carers. Future studies should also include a broad age range of young adults, reflect relevant services and report the findings for different age groups and different needs to build the evidence of effectiveness for young adults. This will support the development of evidence to help optimise service provision responsive to the needs of this complex population, which also fulfils policy intentions.

Health economics and the costs of care (evidence stream 2)

There was an absence of evidence on the health economic or broader cost implications of providing respite care, either for a given service or the relative cost comparisons between services. The screened evidence did not meet our review inclusion criteria, as it did not focus on the costs of respite services or the attribution of cost was unclear and therefore the evidence could not be included.

The lack of evidence that met our inclusion criteria highlights the dearth of research in this area, despite previous research finding only a handful of studies of the economic impact of different models of care for children with complex needs, which did not include cost specifically for respite care. 136 Although we did not find any formal health economics studies that met our review criteria, we did find a limited amount of information on projected costs of care in response to our call for evidence. This young adult respite service has been piloted and evaluated, and so updated figures based on implementation will be available in due course [URL: www.stelizabethhospice.org.uk/how-we-can-help/hospice-care/young-adult-service/short-break-unit/ (accessed 9 December 2020)]. The business plan included provision of 47 residential three-night weekends over 12 months (i.e. Friday afternoon to Monday morning), based on two young adults aged 18–40 years sharing a room. The projected annual costs of £123,625 included registered nurses and health-care assistants, a multidisciplinary assessment, use of the day unit and facilities at the hospice, meals and 20 hours for a co-ordinator role. In addition, the business plan forecast £11,589 for annual training of 10 staff members. 123

Despite the lack of health economic evidence, it is worth noting that UK unit costs for respite care and short breaks for disabled children up to age 18 years are reported elsewhere. 137 The cost of providing a similar respite care service for young adults with similar complex care needs is unlikely to be significantly different from the reported unit costs for those aged < 18 years. This is because the service costs are mainly driven by the staffing ratios required to provide the appropriate care to someone with a complex health-care condition, rather than chronological age. Some illustrative unit costs of £35 per day for activity days, £420 per week for residential care and £1,000 per week for a longer break were also reported by the Welsh Government, although these figures are 10 years old and not for complex care. 135 The costs of respite care for children with congenital conditions and chromosomal disorders who have complex needs that require specialist care are higher than the average costs for short breaks for children with less complex conditions. 136 The costs of respite care for young adults with complex needs, due to comorbidities or the use of specialist technology, are also likely to be higher than average, and escalate according to the complexity of the young person’s needs, as a consequence of the requirement for specialist staff and increased staffing ratios.

Absence of evidence on the absolute and relative costs of different types of respite care for young adults highlights the need for studies that compare the economic costs of this service variation. This is particularly salient in view of the increasing prevalence of lower cost respite provision that can accommodate more people, such as organised recreational activities, but would be unsuitable for many of the young adults with complex health-care needs. Moreover, the benefits of respite services for young adults with complex needs may be multidimensional and involve a range of outcomes for the young person and the wider family. The economic implications of these wider benefits should not be disregarded. Comparative studies of different types of respite care that incorporate measures of cost-effectiveness are vital to ensure that the balance of costs, individual needs and experienced outcomes are reported to inform evidence-based commissioning and the provision of services.

Performance indicators and outcome measures that capture unintended consequences and harms, as well as benefits, are needed (policy 3). In addition, capturing unit and cost-effectiveness data would provide evidence for the socioeconomic argument for respite care as an intervention and to inform future commissioning (policy 6). Appropriate economic indicators would increase understanding of how cost-effective respite care can support quality of life for the young adult and their parents. This information could also support service planning and commissioning to prevent the breakdown of care that can result in crisis hospital admissions and the detrimental impact on the physical and mental health of family carers, including the impact on educational attainment of siblings. Quantifiable measures may include comparison of unit costs for different respite care services and comparison of the cost of regular respite care with health-care costs for emergency interventions (policies 3 and 6).

Experience and attitudes (evidence stream 3)

We searched for quantitative, qualitative and mixed-methods evidence reporting the experience of young adults, families and providers of respite care services and their attitudes towards the services provided. No quantitative or mixed-method evidence that met the inclusion criteria was found. Twenty qualitative sources across 27 records22,27,35,41,59–76,102,103,107–109 met the review inclusion criteria. These included peer-reviewed academic journal papers, NFPO reports and evaluation reports of funding schemes for respite care that included limited qualitative evidence, although methods were not reported. The quality of each source of evidence was assessed using the CASP checklist for qualitative research, and GRADE-CERQual was used to assess the confidence in synthesised qualitative findings (see Table 4). The key findings for each of the themes identified in the data were assessed, with a high confidence rating attributed to most findings. The evidence captured the perspectives of young adults, parents, wider family and service providers via professionals. However, it is worth noting that only 20% of participants were young adults (n = 175) and 1% were siblings (n = 12), highlighting the need for future work to include the views and experiences of young adults and siblings to ensure that their voice is heard about their access and experience of care, and wishes for future services (policies 1, 2, 5 and 7).

Published protocol (gold open access)

Pilkington G, Knighting K, Bray L, Downing J, Jack BA, Maden M, et al. The specification, acceptability and effectiveness of respite care and short breaks for young adults with complex healthcare needs: protocol for a mixed-methods systematic review. BMJ Open 2019;9:e030470.

Poster conference presentations of the published protocol

Pilkington G, Knighting K, Noyes J, Roe B, Maden M, Bray L, et al. Deconstructing the Maze: Identifying and Categorising Models of Respite Care and Short Breaks for Young Adults with Complex Healthcare Needs (CHCNs). The Martin House Research Centre 1st Biennial Research conference. 21 September 2018, University of York. Poster presentation.

Pilkington G, Knighting K, Noyes J, Roe B, Maden M, Bray L, et al. Uncharted Territory: Mixed-Methods Systematic Review to Map, Characterise, and Evaluate Respite Care for Young Adults with Complex Healthcare Needs. Health Services Research UK. 2 and 3 July 2019, Manchester, UK. Spoken poster.

Invited talk on patient and public involvement in evidence synthesis

Knighting, K. Patient and Public Involvement in Evidence Synthesis. Invited speaker at an open seminar at Liverpool Reviews and Implementation Group, University of Liverpool, Liverpool, UK, November 2018.

Search strategy

1. exp Respite Care/

2. exp Hospice Care/

3. exp HOSPICES/

4. exp “Hospice and Palliative Care Nursing”/

5. exp Day Care, Medical/

6. exp Night Care/

7. exp Intermediate Care Facilities/

8. exp Terminal Care/

9. exp HOLIDAYS/

10. “day* away”.ti,ab.

11. “day care*”.ti,ab.

12. “day centre*”.ti,ab.

13. “day center*”.ti,ab.

14. “day program*”.ti,ab.

15. “day service*”.ti,ab.

16. holiday*.ti,ab.

17. “home support*”.ti,ab.

18. hospice*.ti,ab.

19. “intermediate care”.ti,ab.

20. “night care*”.ti,ab.

21. “night-time care*”.ti,ab.

22. “partial hospitalisation*”.ti,ab.

23. “partial hospitalization*”.ti,ab.

24. “relief care*”.ti,ab.

25. “relief support”.ti,ab.

26. “residential care*”.ti,ab.

27. “residential home*”.ti,ab.

28. “residential facilit*”.ti,ab.

29. respite*.ti,ab.

30. “short break*”.ti,ab.

31. “short stay*”.ti,ab.

32. “sitting service*”.ti,ab.

33. “support program*”.ti,ab.

34. “support scheme*”.ti,ab.

35. “support service*”.ti,ab.

36. “temporary admission*”.ti,ab.

37. “temporary break*”.ti,ab.

38. “temporary care*”.ti,ab.

39. “temporary relief”.ti,ab.

40. “temporary support*”.ti,ab.

41. “short-term admission*”.ti,ab.

42. “short-term break*”.ti,ab.

43. “short-term care*”.ti,ab.

44. “short-term relief”.ti,ab.

45. “short-term support*”.ti,ab.

46. “time off”.ti,ab.

47. vacation*.ti,ab.

48. “care service*”.ti,ab.

49. “overnight stay*”.ti,ab.

50. “home-based support*”.ti,ab.

51. “befriend* service*”.ti,ab.

52. “short-break foster*”.ti,ab.

53. “adult placement scheme*”.ti,ab.

54. “shared care”.ti,ab.

55. “replacement care”.ti,ab.

56. “family support”.ti,ab.

57. or/1-56

58. exp Palliative Care/

59. exp Palliative Medicine/

60. exp Terminally Ill/

61. exp Heart Failure/

62. exp MUSCULAR DYSTROPHY, DUCHENNE/

63. exp Neoplasms/

64. exp Muscular Dystrophies/

65. exp Cerebral Palsy/

66. exp Spinal Dysraphism/

67. exp Cystic Fibrosis/

68. exp Disabled Persons/

69. exp Disabled Children/

70. exp Neurodegenerative Diseases/

71. exp Multiple Trauma/

72. exp Genetic Diseases, Inborn/

73. exp Chromosome Disorders/

74. exp “CONGENITAL, HEREDITARY, AND NEONATAL DISEASES AND

75. ABNORMALITIES”/

76. (advanc* adj3 disease*).ti,ab.

77. (advanc* adj3 illness*).ti,ab.

78. (advanc* adj3 condition*).ti,ab.

79. (advanc* adj3 disorder*).ti,ab.

80. (advanc* adj3 abnormalit*).ti,ab.

81. (advanc* adj3 impairment*).ti,ab.

82. (advanc* adj3 handicap*).ti,ab.

83. (degenerative adj3 disease*).ti,ab.

84. (degenerative adj3 illness*).ti,ab.

85. (degenerative adj3 condition*).ti,ab.

86. (degenerative adj3 disorder*).ti,ab.

87. (degenerative adj3 abnormalit*).ti,ab.

88. (degenerative adj3 impairment*).ti,ab.

89. (degenerative adj3 handicap*).ti,ab.

90. (progressive adj3 disease*).ti,ab.

91. (progressive adj3 illness*).ti,ab.

92. (progressive adj3 condition*).ti,ab.

93. (progressive adj3 disorder*).ti,ab.

94. (progressive adj3 abnormalit*).ti,ab.

95. (progressive adj3 impairment*).ti,ab.

96. (progressive adj3 handicap*).ti,ab.

97. “diminished life expectancy”.ti,ab.

98. “limited life expectancy”.ti,ab.

99. cancer*.ti,ab.

100. duchenne.ti,ab.

101. dying.ti,ab.

102. “end of life”.ti,ab.

103. (“end stage renal failure” or “end stage liver failure”).ti,ab.

104. “heart failure”.ti,ab.

105. incurable.ti,ab.

106. life-limit*.ti,ab.

107. “life limit*”.ti,ab.

108. (life adj3 short*).ti,ab.

109. (live* adj3 short*).ti,ab.

110. “life threaten*”.ti,ab.

111. “limited life expectancy”.ti,ab.

112. LLC.ti,ab.

113. LLI.ti,ab.

114. “muscular dystroph*”.ti,ab.

115. neoplasm*.ti,ab.

116. “neurodegenerative condition*”.ti,ab.

117. “neurodegenerative disease*”.ti,ab.

118. “neurodegenerative illness*”.ti,ab.

119. “neurodegenerative disorder*”.ti,ab.

120. “neurodegenerative abnormalit*”.ti,ab.

121. “neurodegenerative impairment*”.ti,ab.

122. “neurodegenerative handicap*”.ti,ab.

123. oncology.ti,ab.

124. palliative.ti,ab.

125. “poor prognosis”.ti,ab.

126. (serious* adj3 ill*).ti,ab.

127. (terminal* adj3 ill*).ti,ab.

128. (terminal* adj3 care*).ti,ab.

129. (terminal* adj3 disease*).ti,ab.

130. (terminal* adj3 condition*).ti,ab.

131. (terminal* adj3 disorder*).ti,ab.

132. (terminal* adj3 abnormalit*).ti,ab.

133. (terminal* adj3 impairment*).ti,ab.

134. (terminal* adj3 handicap*).ti,ab.

135. (genetic adj3 disease*).ti,ab.

136. (genetic adj3 disorder*).ti,ab.

137. (genetic adj3 illness*).ti,ab.

138. (genetic adj3 condition*).ti,ab.

139. (genetic adj3 abnormalit*).ti,ab.

140. (genetic adj3 impairment*).ti,ab.

141. (genetic adj3 handicap*).ti,ab.

142. (chromosomal adj3 disease*).ti,ab.

143. (chromosomal adj3 illness*).ti,ab.

144. (chromosomal adj3 disorder*).ti,ab.

145. (chromosomal adj3 condition*).ti,ab.

146. (chromosomal adj3 abnormalit*).ti,ab.

147. (chromosomal adj3 impairment*).ti,ab.

148. (chromosomal adj3 handicap*).ti,ab.

149. (congenital adj3 disease*).ti,ab.

150. (congenital adj3 illness*).ti,ab.

151. (congenital adj3 disorder*).ti,ab.

152. (congenital adj3 condition*).ti,ab.

153. (congenital adj3 abnormalit*).ti,ab.

154. (congenital adj3 impairment*).ti,ab.

155. (congenital adj3 handicap*).ti,ab.

156. “complex health* need*”.ti,ab.

157. “early death*”.ti,ab.

158. “cerebral pals*”.ti,ab.

159. “spina bifida”.ti,ab.

160. “cystic fibrosis”.ti,ab.

161. encephalopath*.ti,ab.

162. disabilit*.ti,ab.

163. disabled.ti,ab.

164. handicap*.ti,ab.

165. spastic*.ti,ab.

166. “impaired motor skill*”.ti,ab.

167. “spinal cord condition*”.ti,ab.

168. “multiple trauma”.ti,ab.

169. “acquired brain injur*”.ti,ab.

170. “neurological condition*”.ti,ab.

171. “neuromuscular condition*”.ti,ab.

172. “multi-organ disease*”.ti,ab.

173. neurodisabilit*.ti,ab.

174. or/58-172

175. “young adult*”.ti,ab.

176. “young person”.ti,ab.

177. “young people”.ti,ab.

178. youth*.ti,ab.

179. “emerg* adult*”.ti,ab.

180. “early adult*”.ti,ab.

181. (child* adj3 transition adj3 adult*).ti,ab.

182. (adolescen* adj3 transition adj3 adult*).ti,ab.

183. (teenage* adj3 transition adj3 adult*).ti,ab.

184. (paediatric* adj3 transition adj3 adult*).ti,ab.

185. (pediatric* adj3 transition adj3 adult).ti,ab.

186. “college student*”.ti,ab.

187. “university student*”.ti,ab.

188. “post-secondary student*”.ti,ab.

189. undergraduate*.ti,ab.

190. postgraduate*.ti,ab.

191. exp Young Adult/

192. exp ADOLESCENT/

193. exp ADULT/

194. exp FAMILY/

195. exp CAREGIVERS/

196. exp PARENTS/

197. famil*.ti,ab.

198. carer*.ti,ab.

199. caregiver*.ti,ab.

200. parent*.ti,ab.

201. grandparent*.ti,ab.

202. relative*.ti,ab.

203. relation*.ti,ab.

204. sibling*.ti,ab.

205. or/174-203

206. 57 and 173 and 204

207. limit 205 to yr = “2002 -Current”

Search strategy

1. S1 (MH “Respite Care”)

2. S2 (MH “Hospice Care”)

3. S3 (MH “Hospices”)

4. S4 (MH “Hospice and Palliative Nursing”)

5. S5 (MH “Day Care”)

6. S6 (MH “Child Day Care”)

7. S7 (MH “Night Care”)

8. S8 (MH “Terminal Care+”)

9. S9 (MH “Holidays”)

10. S10 TI “day* away”

11. S11 AB “day* away”

12. S12 TI “day care*”

13. S13 AB “day care*”

14. S14 TI “day centre*”

15. S15 AB “day centre*”

16. S16 TI “day center*”

17. S17 AB “day center*”

18. S18 TI “day program*”

19. S19 AB “day program*”

20. S20 TI “day service*”

21. S21 AB “day service*”

22. S22 TI holiday*

23. S23 AB holiday*

24. S24 TI “home support*”

25. S25 AB “home support*”

26. S26 TI hospice*

27. S27 AB hospice*

28. S28 TI “intermediate care”

29. S29 AB “intermediate care”

30. S30 TI “night care*”

31. S31 AB “night care*”

32. S32 TI “night-time care*”

33. S33 AB “night-time care*”

34. S34 TI “partial hospitalisation*”

35. S35 AB “partial hospitalisation*”

36. S36 TI “partial hospitalization*”

37. S37 AB “partial hospitalization*”

38. S38 TI “relief care*”

39. S39 AB “relief care*”

40. S40 TI “relief support”

41. S41 AB “relief support”

42. S42 TI “residential care*”

43. S43 AB “residential care*”

44. S44 TI “residential home*”

45. S45 AB “residential home*”

46. S46 TI “residential facilit*”

47. S47 AB “residential facilit*”

48. S48 TI respite*

49. S49 AB respite*

50. S50 TI “short break*”

51. S51 AB “short break*”

52. S52 TI “short stay*”

53. S53 AB “short stay*”

54. S54 TI “sitting service*”

55. S55 AB “sitting service*”

56. S56 TI “support program*”

57. S57 AB “support program*”

58. S58 TI “support scheme*”

59. S59 AB “support scheme*”

60. S60 TI “support service*”

61. S61 AB “support service*”

62. S62 TI “temporary admission*”

63. S63 AB “temporary admission*”

64. S64 TI “temporary break*”

65. S65 AB “temporary break*”

66. S66 TI “temporary care*”

67. S67 AB “temporary care*”

68. S68 TI “temporary relief”

69. S69 AB “temporary relief”

70. S70 TI “temporary support*”

71. S71 AB “temporary support*”

72. S72 TI “short-term admission*”

73. S73 AB “short-term admission*”

74. S74 TI “short-term break*”

75. S75 AB “short-term break*”

76. S76 TI “short-term care*”

77. S77 AB “short-term care*”

78. S78 TI “short-term relief”

79. S79 AB “short-term relief”

80. S80 TI “short-term support*”

81. S81 AB “short-term support*”

82. S82 TI “time off”

83. S83 AB “time off”

84. S84 TI vacation*

85. S85 AB vacation*

86. S86 TI “care service*”

87. S87 AB “care service*”

88. S88 TI “overnight stay*”

89. S89 AB “overnight stay*”

90. S90 TI “home-based support*”

91. S91 AB “home-based support*”

92. S92 TI “befriend* service*”

93. S93 AB “befriend* service*”

94. S94 TI “short-break foster*”

95. S95 AB “short-break foster*”

96. S96 TI “adult placement scheme*”

97. S97 AB “adult placement scheme*”

98. S98 TI “shared care”

99. S99 AB “shared care”

100. S100 TI “replacement care”

101. S101 AB “replacement care”

102. S102 TI “family support”

103. S103 AB “family support”

104. S104  S1 OR S2 OR S3 OR S4 OR S5 OR S6 OR S7 OR S8 OR S9 OR S10 OR S11 OR S12 OR S13 OR S14 OR S15 OR S16 OR S17 OR S18 OR S19 OR S20 OR S21 OR S22 OR S23 OR S24 OR S25 OR S26 OR S27 OR S28 OR S29 OR S30 OR S31 OR S32 OR S33 OR S34 OR S35 OR S36 OR S37 OR S38 OR S39 OR S40 OR S41 OR S42 OR S43 OR S44 OR S45 OR S46 OR S47 OR S48 OR S49 OR S50 OR S51 OR S52 OR S53 OR S54 OR S55 OR S56 OR S57 OR S58 OR S59 OR S60 OR S61 OR S62 OR S63 OR S64 OR S65 OR S66 OR S67 OR S68 OR S69 OR S70 OR S71 OR S72 OR S73 OR S74 OR S75 OR S76 OR S77 OR S78 OR S79 OR S80 OR S81 OR S82 OR S83 OR S84 OR S85 OR S86 OR S87 OR S88 OR S89 OR S90 OR S91 OR S92 OR S93 OR S94 OR S95 OR S96 OR S97 OR S98 OR S99 OR S100 OR S101 OR S102 OR S103

105. S105 (MH “Palliative Care”)

106. S106 (MH “Terminally Ill Patients+”)

107. S107 (MH “Heart Failure”)

108. S108 (MH “Muscular Dystrophy+”)

109. S109 (MH “Muscular Dystrophy, Duchenne+”)

110. S110 (MH “Neoplasms+”)

111. S111 (MH “Cerebral Palsy”)

112. S112 (MH “Spina Bifida”)

113. S113 (MH “Cystic Fibrosis”)

114. S114 (MH “Disabled+”)

115. S115 (MH “Multiple Trauma”)

116. S116 (MH “Neurodegenerative Diseases+”)

117. S117 (MH “Chromosome Disorders”)

118. S118 TI cancer*

119. S119 AB cancer*

120. S120 TI advanc* N3 disease*

121. S121 AB advanc* N3 disease*

122. S122 TI advanc* N3 illness*

123. S123 AB advanc* N3 illness*

124. S124 TI advanc* N3 condition*

125. S125 AB advanc* N3 condition*

126. S126 TI advanc* N3 disorder*

127. S127 AB advanc* N3 disorder*

128. S128 TI advanc* adj3 abnormalit*

129. S129 AB advanc* N3 abnormalit*

130. S130 TI advanc* N3 impairment*

131. S131 AB advanc* N3 impairment*

132. S132 TI advanc* N3 handicap*

133. S133 AB advanc* N3 handicap*

134. S134 TI degenerative N3 disease*

135. S135 AB degenerative N3 disease*

136. S136 TI degenerative N3 illness*

137. S137 AB degenerative N3 illness*

138. S138 TI degenerative N3 condition*

139. S139 AB degenerative N3 condition*

140. S140 TI degenerative N3 disorder*

141. S141 AB degenerative N3 disorder*

142. S142 TI degenerative N3 abnormalit*

143. S143 AB degenerative N3 abnormalit*

144. S144 TI degenerative N3 impairment*

145. S145 AB degenerative N3 impairment*

146. S146 TI degenerative N3 handicap*

147. S147 AB degenerative N3 handicap*

148. S148 TI progressive N3 disease*

149. S149 AB progressive N3 disease*

150. S150 TI progressive N3 illness*

151. S151 AB progressive N3 illness*

152. S152 TI progressive N3 condition*

153. S153 AB progressive N3 condition*

154. S154 TI progressive N3 disorder*

155. S155 AB progressive N3 disorder*

156. S156 TI progressive N3 abnormalit*

157. S157 AB progressive N3 abnormalit*

158. S158 TI progressive N3 impairment*

159. S159 AB progressive N3 impairment*

160. S160 TI progressive N3 handicap*

161. S161 AB progressive N3 handicap*

162. S162 TI “diminished life expectancy”

163. S163 AB “diminished life expectancy”

164. S164 TI “limited life expectancy” OR AB “limited life expectancy”

165. S165 TI duchenne

166. S166 AB duchenne

167. S167 TI dying

168. S168 AB dying

169. S169 TI “end of life”

170. S170 AB “end of life”

171. S171 TI “end stage renal failure”

172. S172 AB “end stage renal failure”

173. S173 TI “end stage liver failure”

174. S174 AB “end stage liver failure”

175. S175 TI “heart failure”

176. S176 AB “heart failure”

177. S177 TI incurable

178. S178 AB incurable

179. S179 TI life-limit*

180. S180 AB life-limit*

181. S181 TI “life limit*”

182. S182 AB “life limit*”

183. S183 TI life N3 short*

184. S184 AB life N3 short*

185. S185 TI live* N3 short*

186. S186 AB live* N3 short*

187. S187 TI “life threaten*”

188. S188 AB “life threaten*”

189. S189 TI “limited life expectancy”

190. S190 AB “limited life expectancy”

191. S191 TI LLC

192. S192 AB LLC

193. S193 TI LLI

194. S194 AB LLI

195. S195 TI “muscular dystroph*”

196. S196 AB “muscular dystroph*”

197. S197 TI neoplasm*

198. S198 AB neoplasm*

199. S199 TI “neurodegenerative disease*”

200. S200 AB “neurodegenerative disease*”

201. S201 TI “neurodegenerative condition*”

202. S202 AB “neurodegenerative condition*”

203. S203 TI “neurodegenerative illness*”

204. S204 AB “neurodegenerative illness*”

205. S205 TI “neurodegenerative disorder*”

206. S206 AB “neurodegenerative disorder*”

207. S207 TI “neurodegenerative abnormalit*”

208. S208 AB “neurodegenerative abnormalit*”

209. S209 TI “neurodegenerative impairment*”

210. S210 AB “neurodegenerative impairment*”

211. S211 TI “neurodegenerative handicap*”

212. S212 AB “neurodegenerative handicap*”

213. S213 TI oncology

214. S214 AB oncology

215. S215 TI palliative

216. S216 AB palliative

217. S217 TI “poor prognosis”

218. S218 AB “poor prognosis”

219. S219 TI serious* N3 ill*

220. S220 AB serious* N3 ill*

221. S221 TI terminal* N3 ill*

222. S222 AB terminal* N3 ill*

223. S223 TI terminal* N3 care*

224. S224 AB terminal* N3 care*

225. S225 TI terminal* N3 disease*

226. S226 AB terminal* N3 disease*

227. S227 TI terminal* N3 condition*

228. S228 AB terminal* N3 condition*

229. S229 TI terminal* N3 disorder*

230. S230 AB terminal* N3 disorder*

231. S231 TI terminal* N3 abnormalit*

232. S232 AB terminal* N3 abnormalit*

233. S233 TI terminal* N3 impairment*

234. S234 AB terminal* N3 impairment*

235. S235 TI terminal* N3 handicap*

236. S236 AB terminal* N3 handicap*

237. S237 TI genetic N3 disease*

238. S238 AB genetic N3 disease*

239. S239 TI genetic N3 disorder*

240. S240 AB genetic N3 disorder*

241. S241 TI genetic N3 illness*

242. S242 AB genetic N3 illness*

243. S243 TI genetic N3 condition*

244. S244 AB genetic N3 condition*

245. S245 TI genetic N3 abnormalit*

246. S246 AB genetic N3 abnormalit*

247. S247 TI genetic N3 impairment*

248. S248 AB genetic N3 impairment*

249. S249 TI genetic N3 handicap*

250. S250 AB genetic N3 handicap*

251. S251 TI chromosomal N3 disease*

252. S252 AB chromosomal N3 disease*

253. S253 TI chromosomal N3 illness*

254. S254 AB chromosomal N3 illness*

255. S255 TI chromosomal N3 disorder*

256. S256 AB chromosomal N3 disorder*

257. S257 TI chromosomal N3 condition*

258. S258 AB chromosomal N3 condition*

259. S259 TI chromosomal N3 abnormalit*

260. S260 TI chromosomal N3 impairment*

261. S261 AB chromosomal N3 impairment*

262. S262 TI chromosomal N3 handicap*

263. S263 AB chromosomal N3 handicap*

264. S264 TI congenital N3 disease*

265. S265 AB congenital N3 disease*

266. S266 TI congenital N3 illness*

267. S267 AB congenital N3 illness*

268. S268 TI congenital N3 disorder*

269. S269 AB congenital N3 disorder*

270. S270 TI congenital N3 condition*

271. S271 AB congenital N3 condition*

272. S272 TI congenital N3 abnormalit*

273. S273 AB congenital N3 abnormalit*

274. S274 TI congenital N3 impairment*

275. S275 AB congenital N3 impairment*

276. S276 TI congenital N3 handicap*

277. S277 AB congenital N3 handicap*

278. S278 TI “complex health* need*”

279. S279 AB “complex health* need*”

280. S280 TI “early death*”

281. S281 AB “early death*”

282. S282 TI “cerebral pals*”

283. S283 AB “cerebral pals*”

284. S284 TI “spina bifida”

285. S285 AB “spina bifida”

286. S286 TI “cystic fibrosis”

287. S287 AB “cystic fibrosis”

288. S288 TI encephalopath*

289. S289 AB encephalopath*

290. S290 TI disabilit*

291. S291 AB disabilit*

292. S292 TI disabled

293. S293 AB disabled

294. S294 TI handicap*

295. S295 AB handicap*

296. S296 TI spastic*

297. S297 AB spastic*

298. S298 TI “impaired motor skill*”

299. S299 AB “impaired motor skill*”

300. S300 TI “spinal cord condition*”

301. S301 AB “spinal cord condition*”

302. S302 TI “multiple trauma”

303. S303 AB “multiple trauma”

304. S304 TI “acquired brain injur*”

305. S305 AB “acquired brain injur*”

306. S306 TI “neurological condition*”

307. S307 AB “neurological condition*”

308. S308 TI “neuromuscular condition*”

309. S309 AB “neuromuscular condition*”

310. S310 TI “multi-organ disease*”

311. S311 AB “multi-organ disease*”

312. S312 TI neurodisabilit*

313. S313 AB neurodisabilit*

314. S314 S105 OR S106 OR S107 OR S108 OR S109 OR S110 OR S111 OR S112 OR S113 OR S114 OR S115 OR S116 OR S117 OR S118 OR S119 OR S120 OR S121 OR S122 OR S123 OR S124 OR S125 OR S126 OR S127 OR S128 OR S129 OR S130 OR S131 OR S132 OR S133 OR S134 OR S135 OR S136 OR S137 OR S138 OR S139 OR S140 OR S141 OR S142 OR S143 OR S144 OR S145 OR S146 OR S147 OR S148 OR S149 OR S150 OR S151 OR S152 OR S153 OR S154 OR S155 OR S156 OR S157 OR S158 OR S159 OR S160 OR S161 OR S162 OR S163 OR S164 OR S165 OR S166 OR S167 OR S168 OR S169 OR S170 OR S171 OR S172 OR S173 OR S174 OR S175 OR S176 OR S177 OR S178 OR S179 OR S180 OR S181 OR S182 OR S183 OR S184 OR S185 OR S186 OR S187 OR S188 OR S189 OR S190 OR S191 OR S192 OR S193 OR S194 OR S195 OR S196 OR S197 OR S198 OR S199 OR S200 OR S201 OR S202 OR S203 OR S204 OR S205 OR S206 OR S207 OR S208 OR S209 OR S210 OR S211 OR S212 OR S213 OR S214 OR S215 OR S216 OR S217 OR S218 OR S219 OR S220 OR S221 OR S222 OR S223 OR S224 OR S225 OR S226 OR S227 OR S228 OR S229 OR S230 OR S231 OR S232 OR S233 OR S234 OR S235 OR S236 OR S237 OR S238 OR S239 OR S240 OR S241 OR S242 OR S243 OR S244 OR S245 OR S246 OR S247 OR S248 OR S249 OR S250 OR S251 OR S252 OR S253 OR S254 OR S255 OR S256 OR S257 OR S258 OR S259 OR S260 OR S261 OR S262 OR S263 OR S264 OR S265 OR S266 OR S267 OR S268 OR S269 OR S270 OR S271 OR S272 OR S273 OR S274 OR S275 OR S276 OR S277 OR S278 OR S279 OR S280 OR S281 OR S282 OR S283 OR S284 OR S285 OR S286 OR S287 OR S288 OR S289 OR S290 OR S291 OR S292 OR S293 OR S294 OR S295 OR S296 OR S297 OR S298 OR S299 OR S300 OR S301 OR S302 OR S303 OR S304 OR S305 OR S306 OR S307 OR S308 OR S309 OR S310 OR S311 OR S312 OR S313

315. S315 (MH “Young Adult”)

316. S316 (MH “Adolescence+”)

317. S317 (MH “Adult+”)

318. S318 (MH “Family+”)

319. S319 (MH “Caregivers”)

320. S320 (MH “Parents+”)

321. S321 (MH “Students, Graduate”)

322. S322 (MH “Students, Undergraduate”)

323. S323 (MH “Students, College”)

324. S324 (MH “Grandparents”)

325. S325 (MH “Siblings”)

326. S326 (MH “Extended Family”)

327. S327 TI “young adult*”

328. S328 AB “young adult*”

329. S329 TI “young person”

330. S330 TI “young person”

331. S331 TI “young people”

332. S332 AB “young people”

333. S333 TI youth*

334. S334 AB youth*

335. S335 TI “emerg* adult*”

336. S336 AB “emerg* adult*”

337. S337 TI “early adult*”

338. S338 AB “early adult*”

339. S339 TI child* N3 transition N3 adult*

340. S340 AB child* N3 transition N3 adult*

341. S341 TI adolescen* N3 transition N3 adult*

342. S342 AB adolescen* N3 transition N3 adult*

343. S343 TI teenage* N3 transition N3 adult*

344. S344 AB teenage* N3 transition N3 adult*

345. S345 TI paediatric* N3 transition N3 adult*

346. S346 AB paediatric* N3 transition N3 adult*

347. S347 TI pediatric* N3 transition N3 adult*

348. S348 AB pediatric* N3 transition N3 adult*

349. S349 TI “college student*”

350. S350 AB “college student*”

351. S351 TI “university student*”

352. S352 AB “university student*”

353. S353 TI “post-secondary student*”

354. S354 AB “post-secondary student*”

355. S355 TI undergraduate*

356. S356 AB undergraduate*

357. S357 TI postgraduate*

358. S358 AB postgraduate*

359. S359 TI famil*

360. S360 AB famil*

361. S361 TI carer*

362. S362 AB carer*

363. S363 TI caregiver*

364. S364 AB caregiver*

365. S365 TI parent*

366. S366 AB parent*

367. S367 TI grandparent*

368. S368 AB grandparent*

369. S369 TI relative*

370. S370 AB relative*

371. S371 TI relation*

372. S372 AB relation*

373. S373 TI sibling*

374. S374 AB sibling*

375. S375 S315 OR S316 OR S317 OR S318 OR S319 OR S320 OR S321 OR S322 OR S323 OR S324 OR S325 OR S326 OR S327 OR S328 OR S329 OR S330 OR S331 OR S332 OR S333 OR S334 OR S335 OR S336 OR S337 OR S338 OR S339 OR S340 OR S341 OR S342 OR S343 OR S344 OR S345 OR S346 OR S347 OR S348 OR S349 OR S350 OR S351 OR S352 OR S353 OR S354 OR S355 OR S356 OR S357 OR S358 OR S359 OR S360 OR S361 OR S362 OR S363 OR S364 OR S365 OR S366 OR S367 OR S368 OR S369 OR S370 OR S371 OR S372 OR S373 OR S374

376. S376 S104 AND S314 AND S375

377. S377 S104 AND S314 AND S375 Limit 2002-2018

Search strategy

1. exp respite care/

2. exp hospice care/

3. exp hospice/

4. exp “HOSPICE AND PALLIATIVE CARE NURSING”/

5. exp “DAY CARE, MEDICAL”/

6. exp day care/

7. exp night care/

8. exp terminal care/

9. “day* away”.ti,ab.

10. “day care*”.ti,ab.

11. “day centre*”.ti,ab.

12. “day center*”.ti,ab.

13. “day program*”.ti,ab.

14. “day service*”.ti,ab.

15. holiday*.ti,ab.

16. “home support*”.ti,ab.

17. hospice*.ti,ab.

18. “intermediate care”.ti,ab.

19. “night care*”.ti,ab.

20. “night-time care*”.ti,ab.

21. “partial hospitalisation*”.ti,ab.

22. “partial hospitalization*”.ti,ab.

23. “relief care*”.ti,ab.

24. “relief support”.ti,ab.

25. exp “RESIDENTIAL CARE”/

26. “residential care*”.ti,ab.

27. exp “RESIDENTIAL HOME”/

28. “residential home*”.ti,ab.

29. “residential facilit*”.ti,ab.

30. respite*.ti,ab.

31. “short break*”.ti,ab.

32. “short stay*”.ti,ab.

33. “sitting service*”.ti,ab.

34. “support program*”.ti,ab.

35. “support scheme*”.ti,ab.

36. “support service*”.ti,ab.

37. “temporary admission*”.ti,ab.

38. “temporary break*”.ti,ab.

39. “temporary care*”.ti,ab.

40. “temporary relief”.ti,ab.

41. “temporary support*”.ti,ab.

42. “short-term admission*”.ti,ab.

43. “short-term break*”.ti,ab.

44. “short-term care*”.ti,ab.

45. “short-term relief”.ti,ab.

46. “short-term support*”.ti,ab.

47. “time off”.ti,ab.

48. vacation*.ti,ab.

49. “care service*”.ti,ab.

50. “overnight stay*”.ti,ab.

51. “home-based support*”.ti,ab.

52. “befriend* service*”.ti,ab.

53. “short-break foster*”.ti,ab.

54. “adult placement scheme*”.ti,ab.

55. “shared care”.ti,ab.

56. “replacement care”.ti,ab.

57. “family support”.ti,ab.

58. or/1-57

59. exp palliative therapy/

60. exp terminally ill patient/

61. exp heart failure/

62. exp muscular dystrophy/

63. exp duchenne muscular dystrophy/

64. exp neoplasm/

65. exp cerebral palsy/

66. exp spinal dysraphism/

67. exp cystic fibrosis/

68. exp disabled person/

69. exp handicapped child/

70. exp multiple trauma/

71. exp degenerative disease/

72. exp chromosome disorder/

73. exp congenital disorder/

74. exp genetic disorder/

75. (advanc* adj3 disease*).ti,ab.

76. (advanc* adj3 illness*).ti,ab.

77. (advanc* adj3 condition*).ti,ab.

78. (advanc* adj3 disorder*).ti,ab.

79. (advanc* adj3 abnormalit*).ti,ab.

80. (advanc* adj3 impairment*).ti,ab.

81. (advanc* adj3 handicap*).ti,ab.

82. (degenerative adj3 disease*).ti,ab.

83. (degenerative adj3 illness*).ti,ab.

84. (degenerative adj3 condition*).ti,ab.

85. (degenerative adj3 disorder*).ti,ab.

86. (degenerative adj3 abnormalit*).ti,ab.

87. (degenerative adj3 impairment*).ti,ab.

88. (degenerative adj3 handicap*).ti,ab.

89. (progressive adj3 disease*).ti,ab.

90. (progressive adj3 illness*).ti,ab.

91. (progressive adj3 condition*).ti,ab.

92. (progressive adj3 disorder*).ti,ab.

93. (progressive adj3 abnormalit*).ti,ab.

94. (progressive adj3 impairment*).ti,ab.

95. (progressive adj3 handicap*).ti,ab.

96. “diminished life expectancy”.ti,ab.

97. “limited life expectancy”.ti,ab.

98. cancer*.ti,ab.

99. duchenne.ti,ab.

100. dying.ti,ab.

101. “end of life”.ti,ab.

102. “end stage renal failure”.ti,ab.

103. “end stage liver failure”.ti,ab.

104. “heart failure”.ti,ab.

105. incurable.ti,ab.

106. life-limit*.ti,ab.

107. “life limit*”.ti,ab.

108. (life adj3 short*).ti,ab.

109. (live* adj3 short*).ti,ab.

110. “life threaten*”.ti,ab.

111. “limited life expectancy”.ti,ab.

112. LLC.ti,ab.

113. LLI.ti,ab.

114. “muscular dystroph*”.ti,ab.

115. neoplasm*.ti,ab.

116. “neurodegenerative disease*”.ti,ab.

117. “neurodegenerative condition*”.ti,ab.

118. “neurodegenerative illness*”.ti,ab.

119. “neurodegenerative disorder*”.ti,ab.

120. “neurodegenerative abnormalit*”.ti,ab.

121. “neurodegenerative impairment*”.ti,ab.

122. “neurodegenerative handicap*”.ti,ab.

123. oncology.ti,ab.

124. palliative.ti,ab.

125. “poor prognosis”.ti,ab.

126. (serious* adj3 ill*).ti,ab.

127. (terminal* adj3 ill*).ti,ab.

128. (terminal* adj3 care*).ti,ab.

129. (terminal* adj3 disease*).ti,ab.

130. (terminal* adj3 condition*).ti,ab.

131. (terminal* adj3 disorder*).ti,ab.

132. (terminal* adj3 abnormalit*).ti,ab.

133. (terminal* adj3 impairment*).ti,ab.

134. (terminal* adj3 handicap*).ti,ab.

135. (genetic adj3 disease*).ti,ab.

136. (genetic adj3 disorder*).ti,ab.

137. (genetic adj3 illness*).ti,ab.

138. (genetic adj3 condition*).ti,ab.

139. (genetic adj3 abnormalit*).ti,ab.

140. (genetic adj3 impairment*).ti,ab.

141. (genetic adj3 handicap*).ti,ab.

142. (chromosomal adj3 disease*).ti,ab.

143. (chromosomal adj3 illness*).ti,ab.

144. (chromosomal adj3 disorder*).ti,ab.

145. (chromosomal adj3 condition*).ti,ab.

146. (chromosomal adj3 abnormalit*).ti,ab.

147. (chromosomal adj3 impairment*).ti,ab.

148. (chromosomal adj3 handicap*).ti,ab.

149. (congenital adj3 disease*).ti,ab.

150. (congenital adj3 illness*).ti,ab.

151. (congenital adj3 disorder*).ti,ab.

152. (congenital adj3 condition*).ti,ab.

153. (congenital adj3 abnormalit*).ti,ab.

154. (congenital adj3 impairment*).ti,ab.

155. (congenital adj3 handicap*).ti,ab.

156. “complex health* need*”.ti,ab.

157. “early death*”.ti,ab.

158. “cerebral pals*”.ti,ab.

159. “spina bifida”.ti,ab.

160. “cystic fibrosis”.ti,ab.

161. encephalopath*.ti,ab.

162. disabilit*.ti,ab.

163. disabled.ti,ab.

164. handicap*.ti,ab.

165. spastic*.ti,ab.

166. “impaired motor skill*”.ti,ab.

167. “spinal cord condition*”.ti,ab.

168. “multiple trauma”.ti,ab.

169. “acquired brain injur*”.ti,ab.

170. “neurological condition*”.ti,ab.

171. “neuromuscular condition*”.ti,ab.

172. “multi-organ disease*”.ti,ab.

173. neurodisabilit*.ti,ab.

174. or/59-173

175. “young adult*”.ti,ab.

176. “young person”.ti,ab.

177. “young people”.ti,ab.

178. youth*.ti,ab.

179. “emerg* adult*”.ti,ab.

180. “early adult*”.ti,ab.

181. (child* adj3 transition adj3 adult*).ti,ab.

182. (adolescen* adj3 transition adj3 adult*).ti,ab.

183. (teenage* adj3 transition adj3 adult*).ti,ab.

184. (paediatric* adj3 transition adj3 adult*).ti,ab.

185. (pediatric* adj3 transition adj3 adult*).ti,ab.

186. “college student*”.ti,ab.

187. “university student*”.ti,ab.

188. “post-secondary student*”.ti,ab.

189. undergraduate*.ti,ab.

190. postgraduate*.ti,ab.

191. exp “YOUNG ADULT”/

192. exp ADULT/

193. exp ADOLESCENT/

194. exp FAMILY/

195. exp CAREGIVER/

196. exp PARENT/

197. famil*.ti,ab.

198. carer*.ti,ab.

199. caregiver*.ti,ab.

200. parent*.ti,ab.

201. grandparent*.ti,ab.

202. relative*.ti,ab.

203. relation*.ti,ab.

204. sibling*.ti,ab.

205. exp SIBLING/

206. exp GRANDPARENT/

207. exp RELATIVE/

208. exp UNIVERSITY STUDENT/

209. exp COLLEGE STUDENT/

210. or/175-209

211. 58 and 174 and 210

212. limit 211 to yr = “2002 -Current”

Search strategy

1. S1 DE “Respite Care”

2. S2 DE “Hospice”

3. S3 DE “Child Day Care”

4. S4 DE “Adult Day Care”

5. S5 DE “Day Care Centers”

6. S6 DE “Holidays”

7. S7 TI “day* away”

8. S8 AB “day* away”

9. S9 TI “day care*”

10. S10 AB “day care*”

11. S11 TI “day centre*”

12. S12 AB “day centre*”

13. S13 TI “day center*”

14. S14 AB “day center*”

15. S15 TI “day program*”

16. S16 AB “day program*”

17. S17 TI “day service*”

18. S18 AB “day service*”

19. S19 TI holiday*

20. S20 AB holiday*

21. S21 TI “home support*”

22. S22 AB “home support*”

23. S23 TI hospice*

24. S24 AB hospice*

25. S25 TI “intermediate care”

26. S26 AB “intermediate care”

27. S27 TI “night care*”

28. S28 AB “night care*”

29. S29 TI “night-time care*”

30. S30 AB “night-time care*”

31. S31 TI “partial hospitalisation*”

32. S32 AB “partial hospitalisation*”

33. S33 TI “partial hospitalization*”

34. S34 AB “partial hospitalization*”

35. S35 TI “relief care*”

36. S36 AB “relief care*”

37. S37 TI “relief support”

38. S38 AB “relief support”

39. S39 TI “residential care*”

40. S40 AB “residential care*”

41. S41 TI “residential home*”

42. S42 AB “residential home*”

43. S43 TI “residential facilit*”

44. S44 AB “residential facilit*”

45. S45 TI respite*

46. S46 AB respite*

47. S47 TI “short break*”

48. S48 AB “short break*”

49. S49 TI “short stay*”

50. S50 AB “short stay*”

51. S51 TI “sitting service*”

52. S52 AB “sitting service*”

53. S53 TI “support program*”

54. S54 AB “support program*”

55. S55 TI “support scheme*”

56. S56 AB “support scheme*”

57. S57 TI “support service*”

58. S58 AB “support service*”

59. S59 TI “temporary admission*”

60. S60 AB “temporary admission*”

61. S61 TI “temporary break*”

62. S62 AB “temporary break*”

63. S63 TI “temporary care*”

64. S64 AB “temporary care*”

65. S65 TI “temporary relief”

66. S66 AB “temporary relief”

67. S67 TI “temporary support*”

68. S68 AB “temporary support*”

69. S69 TI “short-term admission*”

70. S70 AB “short-term admission*”

71. S71 TI “short-term break*”

72. S72 AB “short-term break*”

73. S73 TI “short-term care*”

74. S74 AB “short-term care*”

75. S75 TI “short-term relief”

76. S76 AB “short-term relief”

77. S77 TI “short-term support*”

78. S78 AB “short-term support*”

79. S79 TI “time off”

80. S80 AB “time off”

81. S81 TI vacation*

82. S82 AB vacation*

83. S83 TI “care service*”

84. S84 AB “care service*”

85. S85 TI “overnight stay*”

86. S86 AB “overnight stay*”

87. S87 TI “home-based support*”

88. S88 AB “home-based support*”

89. S89 TI “befriend* service*”

90. S90 AB “befriend* service*”

91. S91 TI “short-break foster*”

92. S92 AB “short-break foster*”

93. S93 TI “adult placement scheme*”

94. S94 AB “adult placement scheme*”

95. S95 TI “shared care”

96. S96 AB “shared care”

97. S97 TI “replacement care”

98. S98 AB “replacement care”

99. S99 TI “family support”

100. S100 AB “family support”

101. S101 S1 OR S2 OR S3 OR S4 OR S5 OR S6 OR S7 OR S8 OR S9 OR S10 OR S11 OR S12 OR S13 OR S14 OR S15 OR S16 OR S17 OR S18 OR S19 OR S20 OR S21 OR S22 OR S23 OR S24 OR S25 OR S26 OR S27 OR S28 OR S29 OR S30 OR S31 OR S32 OR S33 OR S34 OR S35 OR S36 OR S37 OR S38 OR S39 OR S40 OR S41 OR S42 OR S43 OR S44 OR S45 OR S46 OR S47 OR S48 OR S49 OR S50 OR S51 OR S52 OR S53 OR S54 OR S55 OR S56 OR S57 OR S58 OR S59 OR S60 OR S61 OR S62 OR S63 OR S64 OR S65 OR S66 OR S67 OR S68 OR S69 OR S70 OR S71 OR S72 OR S73 OR S74 OR S75 OR S76 OR S77 OR S78 OR S79 OR S80 OR S81 OR S82 OR S83 OR S84 OR S85 OR S86 OR S87 OR S88 OR S89 OR S90 OR S91 OR S92 OR S93 OR S94 OR S95 OR S96 OR S97 OR S98 OR S99 OR S100 OR S101

102. S102 DE “Palliative Care”

103. S103 DE “Terminally Ill Patients”

104. S104 DE “Muscular Dystrophy”

105. S105 DE “Neoplasms” OR DE “Benign Neoplasms” OR DE “Breast Neoplasms” OR DE “Endocrine Neoplasms” OR DE “Leukemias” OR DE “Melanoma” OR DE “Metastasis” OR DE “Nervous System Neoplasms” OR DE “Terminal Cancer”

106. S106 DE “Cerebral Palsy”

107. S107 DE “Spina Bifida”

108. S108 DE “Cystic Fibrosis”

109. S109 DE “Multiple Disabilities”

110. S110 DE “Neurodegenerative Diseases” OR DE “Alzheimer’s Disease” OR DE “Amyotrophic Lateral Sclerosis” OR DE “Corticobasal Degeneration” OR DE “Dementia with Lewy Bodies” OR DE “Multiple System Atrophy” OR DE “Parkinson’s Disease” OR DE “Semantic Dementia”

111. S111 DE “Genetic Disorders” OR DE “Albinism” OR DE “Charcot-Marie-Tooth Disease” OR DE “Chromosome Disorders” OR DE “Cornelia De Lange Syndrome” OR DE “Huntingtons Disease” OR DE “MELAS” OR DE “Neurofibromatosis” OR DE “Phenylketonuria” OR DE “Porphyria” OR DE “Rh Incompatibility” OR DE “Sex Linked Hereditary Disorders” OR DE “Sickle Cell Disease” OR DE “Tay Sachs Disease” OR DE “Williams Syndrome”

112. S112 DE “Chromosome Disorders” OR DE “Autosome Disorders” OR DE “Deletion (Chromosome)” OR DE “Sex Chromosome Disorders” OR DE “Translocation (Chromosome)” OR DE “Trisomy” OR DE “Williams Syndrome”

113. S113 DE “Congenital Disorders” OR DE “Agenesis” OR DE “Cleft Palate” OR DE “Drug Induced Congenital Disorders” OR DE “Hermaphroditism” OR DE “Microcephaly” OR DE “Prader Willi Syndrome” OR DE “Spina Bifida”

114. S114 DE “Encephalopathies” OR DE “Creutzfeldt Jakob Syndrome” OR DE “Leukoencephalopathy” OR DE “Toxic Encephalopathies” OR DE “Wernicke’s Syndrome”

115. S115 TI cancer*

116. S116 AB cancer*

117. S117 TI (advanc* N3 disease*)

118. S118 AB (advanc* N3 disease*)

119. S119 TI (advanc* N3 illness*)

120. S120 AB (advanc* N3 illness*)

121. S121 TI (advanc* N3 condition*)

122. S122 AB (advanc* N3 condition*)

123. S123 TI (advanc* N3 disorder*)

124. S124 AB (advanc* N3 disorder*)

125. S125 TI (advanc* adj3 abnormalit*)

126. S126 AB (advanc* adj3 abnormalit*)

127. S127 TI (advanc* N3 impairment*)

128. S128 TI (advanc* N3 impairment*)

129. S129 AB (advanc* N3 impairment*)

130. S130 TI (advanc* N3 handicap*)

131. S131 AB (advanc* N3 handicap*)

132. S132 TI (degenerative N3 disease*)

133. S133 AB (degenerative N3 disease*)

134. S134 TI (degenerative N3 illness*)

135. S135 AB (degenerative N3 illness*)

136. S136 TI (degenerative N3 condition*)

137. S137 AB (degenerative N3 condition*)

138. S138 TI (degenerative N3 disorder*)

139. S139 AB (degenerative N3 disorder*)

140. S140 TI (degenerative N3 abnormalit*)

141. S141 AB (degenerative N3 abnormalit*)

142. S142 TI (degenerative N3 impairment*)

143. S143 AB (degenerative N3 impairment*)

144. S144 TI (degenerative N3 handicap*)

145. S145 AB (degenerative N3 handicap*)

146. S146 TI (progressive N3 disease*)

147. S147 AB (progressive N3 disease*)

148. S148 TI (progressive N3 illness*)

149. S149 AB (progressive N3 illness*)

150. S150 TI (progressive N3 condition*)

151. S151 AB (progressive N3 condition*)

152. S152 TI (progressive N3 disorder*)

153. S153 AB (progressive N3 disorder*)

154. S154 TI (progressive N3 abnormalit*)

155. S155 AB (progressive N3 abnormalit*)

156. S156 TI (progressive N3 impairment*)

157. S157 AB (progressive N3 impairment*)

158. S158 TI (progressive N3 handicap*)

159. S159 AB (progressive N3 handicap*)

160. S160 TI (“diminished life expectancy”)

161. S161 AB (“diminished life expectancy”)

162. S162 TI (“limited life expectancy”)

163. S163 AB (“limited life expectancy”)

164. S164 TI duchenne

165. S165 AB duchenne

166. S166 TI dying

167. S167 AB dying

168. S168 TI (“end of life”)

169. S169 AB (“end of life”)

170. S170 TI “end stage liver failure”

171. S171 AB “end stage liver failure”

172. S172 TI “end stage renal failure”

173. S173 AB “end stage renal failure”

174. S174 TI “heart failure”

175. S175 AB “heart failure”

176. S176 TI incurable

177. S177 AB incurable

178. S178 TI life-limit*

179. S179 AB life-limit*

180. S180 TI “life limit*”

181. S181 AB “life limit*”

182. S182 TI (life N3 short*)

183. S183 AB (life N3 short*)

184. S184 TI (live* N3 short*)

185. S185 AB (live* N3 short*)

186. S186 TI (“life threaten*”)

187. S187 AB (“life threaten*”)

188. S188 TI “limited life expectancy”

189. S189 AB “limited life expectancy”

190. S190 TI (LLC)

191. S191 AB (LLC)

192. S192 TI (LLI)

193. S193 AB (LLI)

194. S194 TI “muscular dystroph*”

195. S195 AB “muscular dystroph*”

196. S196 TI neoplasm*

197. S197 AB neoplasm*

198. S198 TI (“neurodegenerative disease*”)

199. S199 AB (“neurodegenerative disease*”)

200. S200 TI (“neurodegenerative condition*”)

201. S201 TI (“neurodegenerative condition*”)

202. S202 AB (“neurodegenerative condition*”)

203. S203 TI (“neurodegenerative illness*”)

204. S204 AB (“neurodegenerative illness*”)

205. S205 TI “neurodegenerative disorder*”

206. S206 AB “neurodegenerative disorder*”

207. S207 TI “neurodegenerative abnormalit*”

208. S208 AB “neurodegenerative abnormalit*”

209. S209 TI “neurodegenerative impairment*”

210. S210 AB “neurodegenerative impairment*”

211. S211 TI “neurodegenerative handicap*”

212. S212 AB “neurodegenerative handicap*”

213. S213 TI oncology

214. S214 AB oncology

215. S215 TI palliative

216. S216 AB palliative

217. S217 TI “poor prognosis”

218. S218 AB “poor prognosis”

219. S219 TI (serious* N3 ill*)

220. S220 AB (serious* N3 ill*)

221. S221 TI (terminal* N3 ill*)

222. S222 AB (terminal* N3 ill*)

223. S223 TI (terminal* N3 care*)

224. S224 AB (terminal* N3 care*)

225. S225 TI (terminal* N3 disease*)

226. S226 AB (terminal* N3 disease*)

227. S227 TI (terminal* N3 condition*)

228. S228 AB (terminal* N3 condition*)

229. S229 TI (terminal* N3 disorder*)

230. S230 AB (terminal* N3 disorder*)

231. S231 TI (terminal* N3 abnormalit*)

232. S232 AB (terminal* N3 abnormalit*)

233. S233 TI (terminal* N3 impairment*)

234. S234 AB (terminal* N3 impairment*)

235. S235 TI (terminal* N3 handicap*)

236. S236 AB (terminal* N3 handicap*)

237. S237 TI (genetic N3 disease*)

238. S238 AB (genetic N3 disease*)

239. S239 TI (genetic N3 disorder*)

240. S240 AB (genetic N3 disorder*)

241. S241 TI (genetic N3 illness*)

242. S242 AB (genetic N3 illness*)

243. S243 TI (genetic N3 condition*)

244. S244 AB (genetic N3 condition*)

245. S245 TI (genetic N3 abnormalit*)

246. S246 AB (genetic N3 abnormalit*)

247. S247 TI (genetic N3 impairment*)

248. S248 AB (genetic N3 impairment*)

249. S249 TI (genetic N3 handicap*)

250. S250 AB (genetic N3 handicap*)

251. S251 TI (chromosomal N3 disease*)

252. S252 AB (chromosomal N3 disease*)

253. S253 TI (chromosomal N3 illness*)

254. S254 AB (chromosomal N3 illness*)

255. S255 TI (chromosomal N3 disorder*)

256. S256 AB (chromosomal N3 disorder*)

257. S257 TI (chromosomal N3 condition*)

258. S258 AB (chromosomal N3 condition*)

259. S259 TI (chromosomal N3 abnormalit*)

260. S260 AB (chromosomal N3 abnormalit*)

261. S261 TI (chromosomal N3 impairment*)

262. S262 AB (chromosomal N3 impairment*)

263. S263 TI (chromosomal N3 handicap*)

264. S264 AB (chromosomal N3 handicap*)

265. S265 TI (congenital N3 disease*)

266. S266 AB (congenital N3 disease*)

267. S267 TI (congenital N3 illness*)

268. S268 AB (congenital N3 illness*)

269. S269 TI (congenital N3 disorder*)

270. S270 AB (congenital N3 disorder*)

271. S271 TI (congenital N3 condition*)

272. S272 AB (congenital N3 condition*)

273. S273 TI (congenital N3 abnormalit*)

274. S274 AB (congenital N3 abnormalit*)

275. S275 TI (congenital N3 impairment*)

276. S276 AB (congenital N3 impairment*)

277. S277 TI (congenital N3 handicap*)

278. S278 AB (congenital N3 handicap*)

279. S279 TI (“complex health* need*”)

280. S280 AB (“complex health* need*”)

281. S281 TI “early death*”

282. S282 AB “early death*”

283. S283 TI “cerebral pals*”

284. S284 AB “cerebral pals*”

285. S285 TI “spina bifida”

286. S286 AB “spina bifida”

287. S287 TI “cystic fibrosis”

288. S288 AB “cystic fibrosis”

289. S289 TI encephalopath*

290. S290 AB encephalopath*

291. S291 TI disabilit*

292. S292 AB disabilit*

293. S293 TI disabled

294. S294 AB disabled

295. S295 TI handicap*

296. S296 AB handicap*

297. S297 TI spastic*

298. S298 AB spastic*

299. S299 TI “impaired motor skill*”

300. S300 AB “impaired motor skill*”

301. S301 TI “spinal cord condition*”

302. S302 AB “spinal cord condition*”

303. S303 TI “multiple trauma”

304. S304 AB “multiple trauma”

305. S305 TI “acquired brain injur*”

306. S306 AB “acquired brain injur*”

307. S307 TI “neurological condition*”

308. S308 AB “neurological condition*”

309. S309 TI “neuromuscular condition*”

310. S310 AB “neuromuscular condition*”

311. S311 TI “multi-organ disease*”

312. S312 AB “multi-organ disease*”

313. S313 TI neurodisabilit*

314. S314 AB neurodisabilit*

315. S315 S102 OR S103 OR S104 OR S105 OR S106 OR S107 OR S108 OR S109 OR S110 OR S111 OR S112 OR S113 OR S114 OR S115 OR S116 OR S117 OR S118 OR S119 OR S120 OR S121 OR S122 OR S123 OR S124 OR S125 OR S126 OR S127 OR S128 OR S129 OR S130 OR S131 OR S132 OR S133 OR S134 OR S135 OR S136 OR S137 OR S138 OR S139 OR S140 OR S141 OR S142 OR S143 OR S144 OR S145 OR S146 OR S147 OR S148 OR S149 OR S150 OR S151 OR S152 OR S153 OR S154 OR S155 OR S156 OR S157 OR S158 OR S159 OR S160 OR S161 OR S162 OR S163 OR S164 OR S165 OR S166 OR S167 OR S168 OR S169 OR S170 OR S171 OR S172 OR S173 OR S174 OR S175 OR S176 OR S177 OR S178 OR S179 OR S180 OR S181 OR S182 OR S183 OR S184 OR S185 OR S186 OR S187 OR S188 OR S189 OR S190 OR S191 OR S192 OR S193 OR S194 OR S195 OR S196 OR S197 OR S198 OR S199 OR S200 OR S201 OR S202 OR S203 OR S204 OR S205 OR S206 OR S207 OR S208 OR S209 OR S210 OR S211 OR S212 OR S213 OR S214 OR S215 OR S216 OR S217 OR S218 OR S219 OR S220 OR S221 OR S222 OR S223 OR S224 OR S225 OR S226 OR S227 OR S228 OR S229 OR S230 OR S231 OR S232 OR S233 OR S234 OR S235 OR S236 OR S237 OR S238 OR S239 OR S240 OR S241 OR S242 OR S243 OR S244 OR S245 OR S246 OR S247 OR S248 OR S249 OR S250 OR S251 OR S252 OR S253 OR S254 OR S255 OR S256 OR S257 OR S258 OR S259 OR S260 OR S261 OR S262 OR S263 OR S264 OR S265 OR S266 OR S267 OR S268 OR S269 OR S270 OR S271 OR S272 OR S273 OR S274 OR S275 OR S276 OR S277 OR S278 OR S279 OR S280 OR S281 OR S282 OR S283 OR S284 OR S285 OR S286 OR S287 OR S288 OR S289 OR S290 OR S291 OR S292 OR S293 OR S294 OR S295 OR S296 OR S297 OR S298 OR S299 OR S300 OR S301 OR S302 OR S303 OR S304 OR S305 OR S306 OR S307 OR S308 OR S309 OR S310 OR S311 OR S312 OR S313 OR S314

316. S316 S101 AND S315

317. S317 DE “Emerging Adulthood”

318. S318 TI “young adult*”

319. S319 AB “young adult*”

320. S320 TI “young person”

321. S321 AB “young person”

322. S322 TI “young people”

323. S323 AB “young people”

324. S324 TI youth*

325. S325 AB youth*

326. S326 TI “emerg* adult*”

327. S327 AB “emerg* adult*”

328. S328 TI “early adult*”

329. S329 AB “early adult*”

330. S330 TI child* N3 transition N3 adult*

331. S331 AB child* N3 transition N3 adult*

332. S332 TI adolescen* N3 transition N3 adult*

333. S333 AB adolescen* N3 transition N3 adult*

334. S334 TI teenage* N3 transition N3 adult*

335. S335 AB teenage* N3 transition N3 adult*

336. S336 TI paediatric* N3 transition N3 adult*

337. S337 AB paediatric* N3 transition N3 adult*

338. S338 TI pediatric* N3 transition N3 adult*

339. S339 AB pediatric* N3 transition N3 adult*

340. S340 TI “college student*”

341. S341 AB “college student*”

342. S342 TI “university student*”

343. S343 AB “university student*”

344. S344 TI “post-secondary student*”

345. S345 AB “post-secondary student*”

346. S346 TI undergraduate*

347. S347 AB undergraduate*

348. S348 TI postgraduate*

349. S349 AB postgraduate*

350. S350 TI famil*

351. S351 AB famil*

352. S352 TI carer*

353. S353 AB carer*

354. S354 TI caregiver*

355. S355 AB caregiver*

356. S356 TI parent*

357. S357 AB parent*

358. S358 TI grandparent*

359. S359 AB grandparent*

360. S360 TI relative*

361. S361 AB relative*

362. S362 TI relation*

363. S363 AB relation*

364. S364 TI sibling*

365. S365 AB sibling*

366. S366 DE “Family” OR DE “Biological Family” OR DE “Extended Family” OR DE “Family of Origin” OR DE “Interethnic Family” OR DE “Interracial Family” OR DE “Military Families” OR DE “Nuclear Family” OR DE “Schizophrenogenic Family” OR DE “Stepfamily”

367. S367 DE “Parents” OR DE “Adoptive Parents” OR DE “Fathers” OR DE “Foster Parents” OR DE “Homosexual Parents” OR DE “Mothers” OR DE “Single Parents” OR DE “Stepparents” OR DE “Surrogate Parents (Humans)”

368. S368 DE “Grandparents”

369. S369 DE “Siblings” OR DE “Brothers” OR DE “Multiple Births” OR DE “Sisters”

370. S370 DE “Caregivers”

371. S371 DE “College Students” OR DE “Postgraduate Students”

372. S372 S317 OR S318 OR S319 OR S320 OR S321 OR S322 OR S323 OR S324 OR S325 OR S326 OR S327 OR S328 OR S329 OR S330 OR S331 OR S332 OR S333 OR S334 OR S335 OR S336 OR S337 OR S338 OR S339 OR S340 OR S341 OR S342 OR S343 OR S344 OR S345 OR S346 OR S347 OR S348 OR S349 OR S350 OR S351 OR S352 OR S353 OR S354 OR S355 OR S356 OR S357 OR S358 OR S359 OR S360 OR S361 OR S362 OR S363 OR S364 OR S365 OR S366 OR S367 OR S368 OR S369 OR S370 OR S371

373. S373 S316 AND S372

374. S374 S316 AND S372

375. S375 S101 AND S315

376. S376 S101 AND S315

Search strategy

[MAINSUBJECT.EXACT.EXPLODE(“Respite care”) OR MAINSUBJECT.EXACT.EXPLODE(“Hospices”) OR MAINSUBJECT.EXACT.EXPLODE(“Day care centres”) OR MAINSUBJECT.EXACT.EXPLODE(“Terminal care”) OR MAINSUBJECT.EXACT.EXPLODE(“Residential care”) OR MAINSUBJECT.EXACT.EXPLODE(“Holidays”) OR MAINSUBJECT.EXACT.EXPLODE(“Residential care”) OR MAINSUBJECT.EXACT.EXPLODE(“Short term care”) OR MAINSUBJECT.EXACT.EXPLODE(“Shared care”) OR MAINSUBJECT.EXACT.EXPLODE(“Family support”) OR [ti(“day* away” OR “day care*” OR “day centre*” OR “day center*” OR “day program*” OR “day service*” OR holiday* OR “home support*” OR hospice* OR “intermediate care” OR “night care*” OR “night-time care*” OR “partial hospitalisation*” OR “partial hospitalization*” OR “relief care*” OR “relief support” OR “residential care*” OR “residential home*” OR “residential facilit*” OR respite* OR “short break*” OR “short stay*” OR “sitting service*” OR “support program*” OR “support scheme*” OR “support service*” OR “temporary admission*” OR “temporary break*” OR “temporary care*” OR “temporary relief” OR “temporary support*” OR “short-term admission*” OR “short-term break*” OR “short-term care*” OR “short-term relief” OR “short-term support*” OR “time off” OR vacation* OR “care service*” OR “overnight stay*” OR “home-based support*” OR “befriend* service*” OR “short-break foster*” OR “adult placement scheme*” OR “shared care” OR “replacement care” OR “family support”) OR ab(“day* away” OR “day care*” OR “day centre*” OR “day center*” OR “day program*” OR “day service*” OR holiday* OR “home support*” OR hospice* OR “intermediate care” OR “night care*” OR “night-time care*” OR “partial hospitalisation*” OR “partial hospitalization*” OR “relief care*” OR “relief support” OR “residential care*” OR “residential home*” OR “residential facilit*” OR respite* OR “short break*” OR “short stay*” OR “sitting service*” OR “support program*” OR “support scheme*” OR “support service*” OR “temporary admission*” OR “temporary break*” OR “temporary care*” OR “temporary relief” OR “temporary support*” OR “short-term admission*” OR “short-term break*” OR “short-term care*” OR “short-term relief” OR “short-term support*” OR “time off” OR vacation* OR “care service*” OR “overnight stay*” OR “home-based support*” OR “befriend* service*” OR “short-break foster*” OR “adult placement scheme*” OR “shared care” OR “replacement care” OR “family support”)]

AND

[MAINSUBJECT.EXACT.EXPLODE(“Palliative care”) OR MAINSUBJECT.EXACT.EXPLODE(“Palliative medicine”) OR MAINSUBJECT.EXACT.EXPLODE(“Terminally ill people”) OR MAINSUBJECT.EXACT.EXPLODE(“Terminally ill young adults”) OR MAINSUBJECT.EXACT.EXPLODE(“Heart failure”) OR MAINSUBJECT.EXACT.EXPLODE(“Muscular dystrophy”) OR MAINSUBJECT.EXACT.EXPLODE(“Duchenne muscular dystrophy”) OR MAINSUBJECT.EXACT.EXPLODE(“Cancer”) OR MAINSUBJECT.EXACT.EXPLODE(“Cerebral palsy”) OR MAINSUBJECT.EXACT.EXPLODE(“Spina bifida”) OR MAINSUBJECT.EXACT.EXPLODE(“Cystic fibrosis”) OR MAINSUBJECT.EXACT(“Disabled people”) OR MAINSUBJECT.EXACT(“Disabled adolescent girls”) OR MAINSUBJECT.EXACT(“Disabled adolescents”) OR MAINSUBJECT.EXACT(“Disabled adolescent boys”) OR MAINSUBJECT.EXACT(“Disabled children”) OR MAINSUBJECT.EXACT(“Disabled young adults”) OR MAINSUBJECT.EXACT.EXPLODE(“Neurodegenerative diseases”) OR MAINSUBJECT.EXACT.EXPLODE(“Genetic disorders”) OR MAINSUBJECT.EXACT.EXPLODE(“Chromosome abnormalities”) OR MAINSUBJECT.EXACT.EXPLODE(“Congenital abnormality”) OR MAINSUBJECT.EXACT.EXPLODE(“Congenital disorders”) OR MAINSUBJECT.EXACT.EXPLODE(“Encephalopathy”) OR ti(“advanc* disease*” OR “advanc* illness*” OR “advanc* condition*” OR “advanc* disorder*” OR “advanc* abnormalit*” OR “advanc* impairment*” OR “advanc* handicap*” OR “degenerative disease*” OR “degenerative illness*” OR “degenerative condition*” OR “degenerative disorder*” OR “degenerative abnormalit*” OR “degenerative impairment*” OR “degenerative handicap*” OR “progressive disease*” OR “progressive illness*” OR “progressive condition*” OR “progressive disorder*” OR “progressive abnormalit*” OR “progressive impairment*” OR “progressive handicap*” OR “diminished life expectancy” OR “limited life expectancy” OR cancer* OR duchenne OR dying OR “end of life” OR “end stage renal failure” OR “end stage liver failure” OR “heart failure” OR incurable OR life-limit* OR “life limit*” OR “life short*” OR “live* short*” OR “life threaten*” OR “limited life expectancy” OR LLC OR LLI OR “muscular dystroph*” OR neoplasm*.ti,ab OR “neurodegenerative condition*” OR “neurodegenerative disease*” OR “neurodegenerative illness*” OR “neurodegenerative disorder*” OR “neurodegenerative abnormalit*” OR “neurodegenerative impairment*” OR “neurodegenerative handicap*” OR oncology OR palliative OR “poor prognosis” OR “serious* ill*” OR “terminal* ill*” OR “terminal* care*” OR “terminal* disease*” OR “terminal* condition*” OR “terminal* disorder*” OR “terminal* abnormalit*” OR “terminal* impairment*” OR “terminal* handicap*” OR “genetic disease*” OR “genetic disorder*” OR “genetic illness*” OR “genetic condition*” OR “genetic abnormalit*” OR “genetic impairment*” OR “genetic handicap*” OR “chromosomal disease*” OR “chromosomal illness*” OR “chromosomal disorder*” OR “chromosomal condition*” OR “chromosomal abnormalit*” OR “chromosomal impairment*” OR “chromosomal handicap*” OR “congenital disease*” OR “congenital illness*” OR “congenital disorder*” OR “congenital condition*” OR “congenital abnormalit*” OR “congenital impairment*” OR “congenital handicap*” OR “complex health* need*” OR “early death*” OR “cerebral pals*” OR “spina bifida” OR “cystic fibrosis” OR encephalopath* OR disabilit* OR disabled OR handicap* OR spastic* OR “impaired motor skill*” OR “spinal cord condition*” OR “multiple trauma” OR “acquired brain injur*” OR “neurological condition*” OR “neuromuscular condition*” OR “multi-organ disease*” OR neurodisabilit*) OR ab (“advanc* disease*” OR “advanc* illness*” OR “advanc* condition*” OR “advanc* disorder*” OR “advanc* abnormalit*” OR “advanc* impairment*” OR “advanc* handicap*” OR “degenerative disease*” OR “degenerative illness*” OR “degenerative condition*” OR “degenerative disorder*” OR “degenerative abnormalit*” OR “degenerative impairment*” OR “degenerative handicap*” OR “progressive disease*” OR “progressive illness*” OR “progressive condition*” OR “progressive disorder*” OR “progressive abnormalit*” OR “progressive impairment*” OR “progressive handicap*” OR “diminished life expectancy” OR “limited life expectancy” OR cancer* OR duchenne OR dying OR “end of life” OR “end stage renal failure” OR “end stage liver failure” OR “heart failure” OR incurable OR life-limit* OR “life limit*” OR “life short*” OR “live* short*” OR “life threaten*” OR “limited life expectancy” OR LLC OR LLI OR “muscular dystroph*” OR neoplasm*.ti,ab OR “neurodegenerative condition*” OR “neurodegenerative disease*” OR “neurodegenerative illness*” OR “neurodegenerative disorder*” OR “neurodegenerative abnormalit*” OR “neurodegenerative impairment*” OR “neurodegenerative handicap*” OR oncology OR palliative OR “poor prognosis” OR “serious* ill*” OR “terminal* ill*” OR “terminal* care*” OR “terminal* disease*” OR “terminal* condition*” OR “terminal* disorder*” OR “terminal* abnormalit*” OR “terminal* impairment*” OR “terminal* handicap*” OR “genetic disease*” OR “genetic disorder*” OR “genetic illness*” OR “genetic condition*” OR “genetic abnormalit*” OR “genetic impairment*” OR “genetic handicap*” OR “chromosomal disease*” OR “chromosomal illness*” OR “chromosomal disorder*” OR “chromosomal condition*” OR “chromosomal abnormalit*” OR “chromosomal impairment*” OR “chromosomal handicap*” OR “congenital disease*” OR “congenital illness*” OR “congenital disorder*” OR “congenital condition*” OR “congenital abnormalit*” OR “congenital impairment*” OR “congenital handicap*” OR “complex health* need*” OR “early death*” OR “cerebral pals*” OR “spina bifida” OR “cystic fibrosis” OR encephalopath* OR disabilit* OR disabled OR handicap* OR spastic* OR “impaired motor skill*” OR “spinal cord condition*” OR “multiple trauma” OR “acquired brain injur*” OR “neurological condition*” OR “neuromuscular condition*” OR “multi-organ disease*” OR neurodisabilit*)]

AND

[MAINSUBJECT.EXACT.EXPLODE(“Young adults”) OR MAINSUBJECT.EXACT.EXPLODE(“Young adulthood”) OR MAINSUBJECT.EXACT.EXPLODE(“Adolescents”) OR MAINSUBJECT.EXACT.EXPLODE(“Adults”) OR MAINSUBJECT.EXACT.EXPLODE(“Families”) OR MAINSUBJECT.EXACT.EXPLODE(“Carers”) OR MAINSUBJECT.EXACT.EXPLODE(“Parents”) OR MAINSUBJECT.EXACT.EXPLODE(“Grandparents”) OR MAINSUBJECT.EXACT.EXPLODE(“Siblings”) OR MAINSUBJECT.EXACT.EXPLODE(“Postgraduate students”) OR MAINSUBJECT.EXACT.EXPLODE(“Undergraduate students”) OR ti(“young adult*” OR “young person” OR “young people” OR youth* OR “emerg* adult*” OR “early adult*” OR (child* AND transition AND adult*) OR (adolescen* AND transition AND adult*) OR (teenage* AND transition AND adult*) OR (paediatric* AND transition AND adult*) OR (pediatric* AND transition AND adult) OR “college student*” OR “university student*” OR “post-secondary student*” OR undergraduate* OR postgraduate* OR famil* OR carer* OR caregiver* OR parent* OR grandparent* OR relative* OR relation* OR sibling*) OR ab(“young adult*” OR “young person” OR “young people” OR youth* OR “emerg* adult*” OR “early adult*” OR (child* AND transition AND adult*) OR (adolescen* AND transition AND adult*) OR (teenage* AND transition AND adult*) OR (paediatric* AND transition AND adult*) OR (pediatric* AND transition AND adult) OR “college student*” OR “university student*” OR “post-secondary student*” OR undergraduate* OR postgraduate* OR famil* OR carer* OR caregiver* OR parent* OR grandparent* OR relative* OR relation* OR sibling*)]

Limit 2002-2018

Search strategy

1. #1 MeSH descriptor: [Respite Care] explode all trees

2. #2 MeSH descriptor: [Hospice Care] explode all trees

3. #3 MeSH descriptor: [Hospices] explode all trees

4. #4 MeSH descriptor: [Hospice and Palliative Care Nursing] explode all trees

5. #5 MeSH descriptor: [Day Care, Medical] explode all trees

6. #6 MeSH descriptor: [Night Care] explode all trees

7. #7 MeSH descriptor: [Intermediate Care Facilities] explode all trees

8. #8 MeSH descriptor: [Terminal Care] explode all trees

9. #9 MeSH descriptor: [Holidays] explode all trees

10. #10 (day* next away):ti,ab

11. #11 (day next care*):ti,ab

12. #12 (day next centre*):ti,ab

13. #13 (day next center*):ti,ab

14. #14 (day next program*):ti,ab

15. #15 (day next service*):ti,ab

16. #16 holiday*:ti,ab

17. #17 (home next support*):ti,ab

18. #18 hospice*:ti,ab

19. #19 (“intermediate care”):ti,ab

20. #20 (night next care*):ti,ab

21. #21 (night-time next care*):ti,ab

22. #22 (partial next hospitalisation*):ti,ab

23. #23 (partial next hospitalization*):ti,ab

24. #24 (relief next care*):ti,ab

25. #25 (“relief support”):ti,ab

26. #26 (residential next care*):ti,ab

27. #27 (residential next home*):ti,ab

28. #28 (residential next facilit*):ti,ab

29. #29 respite*:ti,ab

30. #30 (short next break*):ti,ab

31. #31 (short next stay*):ti,ab

32. #32 (sitting next service*):ti,ab

33. #33 (support next program*):ti,ab

34. #34 (support next scheme*):ti,ab

35. #35 (support next service*):ti,ab

36. #36 (temporary next admission*):ti,ab

37. #37 (temporary next break*):ti,ab

38. #38 (temporary next care*):ti,ab

39. #39 (“temporary relief”):ti,ab

40. #40 (temporary next support*):ti,ab

41. #41 (short-term next admission*):ti,ab

42. #42 (short-term next break*):ti,ab

43. #43 (short-term next care*):ti,ab

44. #44 (short-term next relief*):ti,ab

45. #45 (short-term next support*):ti,ab

46. #46 (“time off”):ti,ab

47. #47 vacation*:ti,ab

48. #48 (care next service*):ti,ab

49. #49 (overnight next stay*):ti,ab

50. #50 (home-based next support*):ti,ab

51. #51 (befriend* next service*):ti,ab

52. #52 (short-break next foster*):ti,ab

53. #53 (adult next placement next scheme*):ti,ab

54. #54 (“shared care”):ti,ab

55. #55 (“replacement care”):ti,ab

56. #56 (“family support”):ti,ab

57. #57 {OR #1-#56}

58. #58 MeSH descriptor: [Palliative Care] explode all trees

59. #59 MeSH descriptor: [Palliative Medicine] explode all trees

60. #60 MeSH descriptor: [Terminally Ill] explode all trees

61. #61 MeSH descriptor: [Heart Failure] explode all trees

62. #62 MeSH descriptor: [Muscular Dystrophies] explode all trees

63. #63 MeSH descriptor: [Muscular Dystrophy, Duchenne] explode all trees

64. #64 MeSH descriptor: [Neoplasms] explode all trees

65. #65 MeSH descriptor: [Cerebral Palsy] explode all trees

66. #66 MeSH descriptor: [Spinal Dysraphism] explode all trees

67. #67 MeSH descriptor: [Cystic Fibrosis] explode all trees

68. #68 MeSH descriptor: [Disabled Persons] explode all trees

69. #69 MeSH descriptor: [Disabled Children] explode all trees

70. #70 MeSH descriptor: [Neurodegenerative Diseases] explode all trees

71. #71 MeSH descriptor: [Multiple Trauma] explode all trees

72. #72 MeSH descriptor: [Genetic Diseases, Inborn] explode all trees

73. #73 MeSH descriptor: [Chromosome Disorders] explode all trees

74. #74 MeSH descriptor: [Congenital, Hereditary, and Neonatal Diseases and Abnormalities] explode all trees

75. #75 (advanc* near/3 disease*):ti,ab

76. #76 (advanc* near/3 illness*):ti,ab

77. #77 (advanc* near/3 condition*):ti,ab

78. #78 (advanc* near/3 disorder*):ti,ab

79. #79 (advanc* near/3 abnormalit*):ti,ab

80. #80 (advanc* near/3 impairment*):ti,ab

81. #81 (advanc* near/3 handicap*):ti,ab

82. #82 (degenerative near/3 disease*):ti,ab

83. #83 (degenerative near/3 illness*):ti,ab

84. #84 (degenerative near/3 condition*):ti,ab

85. #85 (degenerative near/3 disorder*):ti,ab

86. #86 (degenerative near/3 abnormalit*):ti,ab

87. #87 (degenerative near/3 impairment*):ti,ab

88. #88 (degenerative near/3 handicap*):ti,ab

89. #89 (progressive near/3 disease*):ti,ab

90. #90 (progressive near/3 illness*):ti,ab

91. #91 (progressive near/3 condition*):ti,ab

92. #92 (progressive near/3 disorder*):ti,ab

93. #93 (progressive near/3 abnormalit*):ti,ab

94. #94 (progressive near/3 impairment*):ti,ab

95. #95 (progressive near/3 handicap*):ti,ab

96. #96 (“diminished life expectancy”):ti,ab

97. #97 (“limited life expectancy”):ti,ab

98. #98 cancer*:ti,ab

99. #99 duchenne:ti,ab

100. #100 dying:ti,ab

101. #101 (“end of life”):ti,ab

102. #102 (“end stage renal failure”):ti,ab

103. #103 (“end stage liver failure”):ti,ab

104. #104 “heart failure”:ti,ab

105. #105 incurable:ti,ab

106. #106 (life-limit*):ti,ab

107. #107 (life next limit*):ti,ab.

108. #108 (life near/3 short*):ti,ab

109. #109 (live* near/3 short*):ti,ab

110. #110 (life next threaten*):ti,ab

111. #111 (“limited life expectancy”):ti,ab

112. #112 LLC:ti,ab

113. #113 LLI:ti,ab

114. #114 (muscular next dystroph*):ti,ab

115. #115 neoplasm*:ti,ab

116. #116 (neurodegenerative next condition*):ti,ab

117. #117 (neurodegenerative next disease*):ti,ab

118. #118 (neurodegenerative next illness*):ti,ab

119. #119 (neurodegenerative next disorder*):ti,ab

120. #120 (neurodegenerative next abnormalit*):ti,ab

121. #121 (neurodegenerative next impairment*):ti,ab

122. #122 (neurodegenerative next handicap*):ti,ab

123. #123 oncology:ti,ab

124. #124 palliative:ti,ab

125. #125 (“poor prognosis”):ti,ab

126. #126 (serious* near/3 ill*):ti,ab

127. #127 (terminal* near/3 ill*):ti,ab

128. #128 (terminal* near/3 care*):ti,ab

129. #129 (terminal* near/3 disease*):ti,ab

130. #130 (terminal* near/3 condition*):ti,ab

131. #131 (terminal* near/3 disorder*):ti,ab

132. #132 (terminal* near/3 abnormalit*):ti,ab

133. #133 (terminal* near/3 impairment*):ti,ab

134. #134 (terminal* near/3 handicap*):ti,ab

135. #135 (genetic near/3 disease*):ti,ab

136. #136 (genetic near/3 disorder*):ti,ab

137. #137 (genetic near/3 illness*):ti,ab

138. #138 (genetic near/3 condition*):ti,ab

139. #139 (genetic near/3 abnormalit*):ti,ab

140. #140 (genetic near/3 impairment*):ti,ab

141. #141 (genetic near/3 handicap*):ti,ab

142. #142 (chromosomal near/3 disease*):ti,ab

143. #143 (chromosomal near/3 illness*):ti,ab

144. #144 (chromosomal near/3 disorder*):ti,ab

145. #145 (chromosomal near/3 condition*):ti,ab

146. #146 (chromosomal near/3 abnormalit*):ti,ab

147. #147 (chromosomal near/3 impairment*):ti,ab

148. #148 (chromosomal near/3 handicap*):ti,ab

149. #149 (congenital near/3 disease*):ti,ab

150. #150 (congenital near/3 condition*):ti,ab

151. #151 (congenital near/3 abnormalit*):ti,ab

152. #152 (congenital near/3 illness*):ti,ab

153. #153 (congenital near/3 impairment*):ti,ab

154. #154 (congenital near/3 disorder*):ti,ab

155. #155 (congenital near/3 handicap*):ti,ab

156. #156 (“complex health* need*”):ti,ab

157. #157 (early next death*):ti,ab

158. #158 (cerebral next pals*):ti,ab

159. #159 (“spina bifida”):ti,ab

160. #160 (“cystic fibrosis”):ti,ab

161. #161 encephalopath*:ti,ab

162. #162 disabilit*:ti,ab

163. #163 disabled:ti,ab

164. #164 handicap*:ti,ab

165. #165 spastic*:ti,ab

166. #166 (impaired next motor next skill*):ti,ab

167. #167 (spinal next cord next condition*):ti,ab

168. #168 (“multiple trauma”):ti,ab

169. #169 (acquired next brain next injur*):ti,ab

170. #170 (neurological next condition*):ti,ab

171. #171 (neuromuscular next condition*):ti,ab

172. #172 (multi-organ next disease*):ti,ab

173. #173 neurodisabilit*:ti,ab

174. #174 {OR #58-#173}

175. #175 MeSH descriptor: [Young Adult] explode all trees

176. #176 MeSH descriptor: [Adult] explode all trees

177. #177 MeSH descriptor: [Adolescent] explode all trees

178. #178 MeSH descriptor: [Family] explode all trees

179. #179 MeSH descriptor: [Caregivers] explode all trees

180. #180 MeSH descriptor: [Parents] explode all trees

181. #181 (young next adult*):ti,ab

182. #182 “young person”:ti,ab

183. #183 “young people”:ti,ab

184. #184 youth*:ti,ab

185. #185 (emerg* next adult*):ti,ab

186. #186 (early next adult*):ti,ab

187. #187 (child* near/3 transition near/3 adult*):ti,ab

188. #188 (adolescen* near/3 transition near/3 adult*):ti,ab

189. #189 (teenage* near/3 transition near/3 adult*):ti,ab

190. #190 (paediatric* near/3 transition near/3 adult*):ti,ab

191. #191 (pediatric* near/3 transition near/3 adult*):ti,ab

192. #192 (college next student*):ti,ab

193. #193 (university next student*):ti,ab

194. #194 (post-secondary student*):ti,ab

195. #195 undergraduate*:ti,ab

196. #196 postgraduate*:ti,ab

197. #197 famil*:ti,ab

198. #198 carer*:ti,ab

199. #199 caregiver*:ti,ab

200. #200 parent*:ti,ab

201. #201 grandparent*:ti,ab

202. #202 relative*:ti,ab

203. #203 relation*:ti,ab

204. #204 sibling*:ti,ab

205. #205 {OR #175-#204}

206. #206 #57 AND #174 AND #205

Search strategy

1. MeSH DESCRIPTOR Respite Care EXPLODE ALL TREES

2. MeSH DESCRIPTOR Hospice Care EXPLODE ALL TREES

3. MeSH DESCRIPTOR Hospices EXPLODE ALL TREES

4. MeSH DESCRIPTOR Hospice and Palliative Care Nursing EXPLODE ALL TREES

5. MeSH DESCRIPTOR Day Care, Medical EXPLODE ALL TREES

6. MeSH DESCRIPTOR Night Care EXPLODE ALL TREES

7. MeSH DESCRIPTOR Intermediate Care Facilities EXPLODE ALL TREES

8. MeSH DESCRIPTOR Terminal Care EXPLODE ALL TREES

9. MeSH DESCRIPTOR Holidays EXPLODE ALL TREES

10. (“day* away”) IN DARE, NHSEED, HTA

11. (“day care*”) IN DARE, NHSEED, HTA

12. (“day centre*”) IN DARE, NHSEED, HTA

13. (“day center*”) IN DARE, NHSEED, HTA

14. (“day program*”) IN DARE, NHSEED, HTA

15. (“day service*”) IN DARE, NHSEED, HTA

16. (holiday*) IN DARE, NHSEED, HTA

17. (“home support*”) IN DARE, NHSEED, HTA

18. (hospice*) IN DARE, NHSEED, HTA

19. (“intermediate care”) IN DARE, NHSEED, HTA

20. (“night care*”) IN DARE, NHSEED, HTA

21. (“night-time care*”) IN DARE, NHSEED, HTA

22. (“partial hospitalisation*”) IN DARE, NHSEED, HTA

23. (“partial hospitalization*”) IN DARE, NHSEED, HTA

24. (“relief care*”) IN DARE, NHSEED, HTA

25. (“relief support”) IN DARE, NHSEED, HTA

26. (“residential care*”) IN DARE, NHSEED, HTA

27. (“residential home*”) IN DARE, NHSEED, HTA

28. (“residential facilit*”) IN DARE, NHSEED, HTA

29. (respite*) IN DARE, NHSEED, HTA

30. (“short break*”) IN DARE, NHSEED, HTA

31. (“short stay*”) IN DARE, NHSEED, HTA

32. (“sitting service*”) IN DARE, NHSEED, HTA

33. (“support program*”) IN DARE, NHSEED, HTA

34. (“support scheme*”) IN DARE, NHSEED, HTA

35. (“support service*”) IN DARE, NHSEED, HTA

36. (“temporary admission*”) IN DARE, NHSEED, HTA

37. (“temporary break*”) IN DARE, NHSEED, HTA

38. (“temporary care*”) IN DARE, NHSEED, HTA

39. (“temporary relief”) IN DARE, NHSEED, HTA

40. (“temporary support*”) IN DARE, NHSEED, HTA

41. (“short-term admission*”) IN DARE, NHSEED, HTA

42. (“short-term break*”) IN DARE, NHSEED, HTA

43. (“short-term care*”) IN DARE, NHSEED, HTA

44. (“short-term relief”) IN DARE, NHSEED, HTA

45. (“short-term support*”) IN DARE, NHSEED, HTA

46. (“time off”) IN DARE, NHSEED, HTA

47. (vacation*) IN DARE, NHSEED, HTA

48. (“care service*”) IN DARE, NHSEED, HTA

49. (“overnight stay*”) IN DARE, NHSEED, HTA

50. (“home-based support*”) IN DARE, NHSEED, HTA

51. (“befriend* service*”) IN DARE, NHSEED, HTA

52. (“short-break foster*”) IN DARE, NHSEED, HTA

53. (“adult placement scheme*”) IN DARE, NHSEED, HTA

54. (“shared care”) IN DARE, NHSEED, HTA

55. (“replacement care”) IN DARE, NHSEED, HTA

56. (“family support”) IN DARE, NHSEED, HTA

57. #1 OR #2 OR #3 OR #4 OR #5 OR #6 OR #7 OR #8 OR #9 OR #10 OR #11 OR #12 OR #13 OR #14 OR #15 OR #16 OR #17 OR #18 OR #19 OR #20 OR #21 OR #22 OR #23 OR #24 OR #25 OR #26 OR #27 OR #28 OR #29 OR #30 OR #31 OR #32 OR #33 OR #34 OR #35 OR #36 OR #37 OR #38 OR #39 OR #40 OR #41 OR #42 OR #43 OR #44 OR #45 OR #46 OR #47 OR #48 OR #49 OR #50 OR #51 OR #52 OR #53 OR #54 OR #55 OR #56

58. MeSH DESCRIPTOR Palliative Care EXPLODE ALL TREES

59. MeSH DESCRIPTOR Palliative Medicine EXPLODE ALL TREES

60. MeSH DESCRIPTOR Terminally Ill EXPLODE ALL TREES

61. MeSH DESCRIPTOR Heart Failure EXPLODE ALL TREES

62. MeSH DESCRIPTOR Muscular Dystrophies EXPLODE ALL TREES

63. MeSH DESCRIPTOR Muscular Dystrophy, Duchenne EXPLODE ALL TREES

64. MeSH DESCRIPTOR Neoplasms EXPLODE ALL TREES

65. MeSH DESCRIPTOR Cerebral Palsy EXPLODE ALL TREES

66. MeSH DESCRIPTOR Spinal Dysraphism EXPLODE ALL TREES

67. MeSH DESCRIPTOR Cystic Fibrosis EXPLODE ALL TREES

68. MeSH DESCRIPTOR Disabled Persons EXPLODE ALL TREES

69. MeSH DESCRIPTOR Disabled Children EXPLODE ALL TREES

70. MeSH DESCRIPTOR Neurodegenerative Diseases EXPLODE ALL TREES

71. MeSH DESCRIPTOR Multiple Trauma EXPLODE ALL TREES

72. MeSH DESCRIPTOR Genetic Diseases, Inborn EXPLODE ALL TREES

73. MeSH DESCRIPTOR Chromosome Disorders EXPLODE ALL TREES

74. MeSH DESCRIPTOR Congenital, Hereditary, and Neonatal Diseases and Abnormalities EXPLODE ALL TREES

75. (advanc* adj3 disease*) IN DARE, NHSEED, HTA

76. (advanc* adj3 illness*) IN DARE, NHSEED, HTA

77. (advanc* adj3 condition*) IN DARE, NHSEED, HTA

78. (advanc* adj3 disorder*) IN DARE, NHSEED, HTA

79. (advanc* adj3 abnormalit*) IN DARE, NHSEED, HTA

80. (advanc* adj3 impairment*) IN DARE, NHSEED, HTA

81. (advanc* adj3 handicap*) IN DARE, NHSEED, HTA

82. (degenerative adj3 disease*) IN DARE, NHSEED, HTA

83. (degenerative adj3 illness*) IN DARE, NHSEED, HTA

84. (degenerative adj3 condition*) IN DARE, NHSEED, HTA

85. (degenerative adj3 disorder*) IN DARE, NHSEED, HTA

86. (degenerative adj3 abnormalit*) IN DARE, NHSEED, HTA

87. (degenerative adj3 impairment*) IN DARE, NHSEED, HTA

88. (degenerative adj3 handicap*) IN DARE, NHSEED, HTA

89. (progressive adj3 disease*) IN DARE, NHSEED, HTA

90. (progressive adj3 illness*) IN DARE, NHSEED, HTA

91. (progressive adj3 condition*) IN DARE, NHSEED, HTA

92. (progressive adj3 disorder*) IN DARE, NHSEED, HTA

93. (progressive adj3 abnormalit*) IN DARE, NHSEED, HTA

94. (progressive adj3 impairment*) IN DARE, NHSEED, HTA

95. (progressive adj3 handicap*) IN DARE, NHSEED, HTA

96. (“diminished life expectancy”) IN DARE, NHSEED, HTA

97. (“limited life expectancy”) IN DARE, NHSEED, HTA

98. (cancer*) IN DARE, NHSEED, HTA

99. (duchenne) IN DARE, NHSEED, HTA

100. (dying) IN DARE, NHSEED, HTA

101. (“end of life”) IN DARE, NHSEED, HTA

102. (“end stage renal failure”) IN DARE, NHSEED, HTA

103. (“end stage liver failure”) IN DARE, NHSEED, HTA

104. (“heart failure”) IN DARE, NHSEED, HTA

105. (incurable) IN DARE, NHSEED, HTA

106. (life-limit*) IN DARE, NHSEED, HTA

107. (“life limit*”) IN DARE, NHSEED, HTA

108. (life adj3 short*) IN DARE, NHSEED, HTA

109. (live* adj3 short*) IN DARE, NHSEED, HTA

110. (“life threaten*”) IN DARE, NHSEED, HTA

111. (“limited life expectancy”) IN DARE, NHSEED, HTA

112. (LLC) IN DARE, NHSEED, HTA

113. (LLI) IN DARE, NHSEED, HTA

114. (“muscular dystroph*”) IN DARE, NHSEED, HTA

115. (neoplasm*) IN DARE, NHSEED, HTA

116. (“neurodegenerative condition*”) IN DARE, NHSEED, HTA

117. (“neurodegenerative disease*”) IN DARE, NHSEED, HTA

118. (“neurodegenerative illness*”) IN DARE, NHSEED, HTA

119. (“neurodegenerative disorder*”) IN DARE, NHSEED, HTA

120. (“neurodegenerative abnormalit*”) IN DARE, NHSEED, HTA

121. (“neurodegenerative impairment*”) IN DARE, NHSEED, HTA

122. (“neurodegenerative handicap*”) IN DARE, NHSEED, HTA

123. (oncology) IN DARE, NHSEED, HTA

124. (palliative) IN DARE, NHSEED, HTA

125. (“poor prognosis”) IN DARE, NHSEED, HTA

126. (serious* adj3 ill*) IN DARE, NHSEED, HTA

127. (terminal* adj3 ill*) IN DARE, NHSEED, HTA

128. (terminal* adj3 care*) IN DARE, NHSEED, HTA

129. (terminal* adj3 disease*) IN DARE, NHSEED, HTA

130. (terminal* adj3 condition*) IN DARE, NHSEED, HTA

131. (terminal* adj3 disorder*) IN DARE, NHSEED, HTA

132. (terminal* adj3 abnormalit*) IN DARE, NHSEED, HTA

133. (terminal* adj3 impairment*) IN DARE, NHSEED, HTA

134. (terminal* adj3 handicap*) IN DARE, NHSEED, HTA

135. (genetic adj3 disease*) IN DARE, NHSEED, HTA

136. (genetic adj3 disorder*) IN DARE, NHSEED, HTA

137. (genetic adj3 illness*) IN DARE, NHSEED, HTA

138. (genetic adj3 condition*) IN DARE, NHSEED, HTA

139. (genetic adj3 abnormalit*) IN DARE, NHSEED, HTA

140. (genetic adj3 impairment*) IN DARE, NHSEED, HTA

141. (genetic adj3 handicap*) IN DARE, NHSEED, HTA

142. (chromosomal adj3 disease*) IN DARE, NHSEED, HTA

143. (chromosomal adj3 illness*) IN DARE, NHSEED, HTA

144. (chromosomal adj3 disorder*) IN DARE, NHSEED, HTA

145. (chromosomal adj3 condition*) IN DARE, NHSEED, HTA

146. (chromosomal adj3 abnormalit*) IN DARE, NHSEED, HTA

147. (chromosomal adj3 impairment*) IN DARE, NHSEED, HTA

148. (chromosomal adj3 handicap*) IN DARE, NHSEED, HTA

149. (congenital adj3 disease*) IN DARE, NHSEED, HTA

150. (congenital adj3 illness*) IN DARE, NHSEED, HTA

151. (congenital adj3 disorder*) IN DARE, NHSEED, HTA

152. (congenital adj3 condition*) IN DARE, NHSEED, HTA

153. (congenital adj3 abnormalit*) IN DARE, NHSEED, HTA

154. (congenital adj3 impairment*) IN DARE, NHSEED, HTA

155. (congenital adj3 handicap*) IN DARE, NHSEED, HTA

156. (“complex health* need*”) IN DARE, NHSEED, HTA

157. (“early death*”) IN DARE, NHSEED, HTA

158. (“cerebral pals*”) IN DARE, NHSEED, HTA

159. (“spina bifida”) IN DARE, NHSEED, HTA

160. (“cystic fibrosis”) IN DARE, NHSEED, HTA

161. (encephalopath*) IN DARE, NHSEED, HTA

162. (disabilit*) IN DARE, NHSEED, HTA

163. (disabled) IN DARE, NHSEED, HTA

164. (handicap*) IN DARE, NHSEED, HTA

165. (spastic*) IN DARE, NHSEED, HTA

166. (“impaired motor skill*”) IN DARE, NHSEED, HTA

167. (“spinal cord condition*”) IN DARE, NHSEED, HTA

168. (“multiple trauma”) IN DARE, NHSEED, HTA

169. (“acquired brain injur*”) IN DARE, NHSEED, HTA

170. (“neurological condition*”) IN DARE, NHSEED, HTA

171. (“neuromuscular condition*”) IN DARE, NHSEED, HTA

172. (“multi-organ disease*”) IN DARE, NHSEED, HTA

173. (neurodisabilit*) IN DARE, NHSEED, HTA

174. #58 OR #59 OR #60 OR #61 OR #62 OR #63 OR #64 OR #65 OR #66 OR #67 OR #68 OR #69 OR #70 OR #71 OR #72 OR #73 OR #74 OR #75 OR #76 OR #77 OR #78 OR #79 OR #80 OR #81 OR #82 OR #83 OR #84 OR #85 OR #86 OR #87 OR #88 OR #89 OR #90 OR #91 OR #92 OR #93 OR #94 OR #95 OR #96 OR #97 OR #98 OR #99 OR #100 OR #101 OR #102 OR #103 OR #104 OR #105 OR #106 OR #107 OR #108 OR #109 OR #110 OR #111 OR #112 OR #113 OR #114 OR #115 OR #116 OR #117 OR #118 OR #119 OR #120 OR #121 OR #122 OR #123 OR #124 OR #125 OR #126 OR #127 OR #128 OR #129 OR #130 OR #131 OR #132 OR #133 OR #134 OR #135 OR #136 OR #137 OR #138 OR #139 OR #140 OR #141 OR #142 OR #143 OR #144 OR #145 OR #146 OR #147 OR #148 OR #149 OR #150 OR #151 OR #152 OR #153 OR #154 OR #155 OR #156 OR #157 OR #158 OR #159 OR #160 OR #161 OR #162 OR #163 OR #164 OR #165 OR #166 OR #167 OR #168 OR #169 OR #170 OR #171 OR #172 OR #173 22950 Delete

175. #57 AND #174

176. MeSH DESCRIPTOR Young Adult EXPLODE ALL TREES

177. MeSH DESCRIPTOR Adolescent EXPLODE ALL TREES

178. MeSH DESCRIPTOR Adult EXPLODE ALL TREES

179. MeSH DESCRIPTOR Family EXPLODE ALL TREES

180. MeSH DESCRIPTOR Caregivers EXPLODE ALL TREES

181. MeSH DESCRIPTOR Parents EXPLODE ALL TREES

182. (“young adult*”) IN DARE, NHSEED, HTA

183. (“young person”) IN DARE, NHSEED, HTA

184. (“young people”) IN DARE, NHSEED, HTA

185. (youth*) IN DARE, NHSEED, HTA

186. (“emerg* adult*”) IN DARE, NHSEED, HTA

187. (“early adult*”) IN DARE, NHSEED, HTA

188. ((child* adj3 transition adj3 adult*)) IN DARE, NHSEED, HTA

189. ((adolescen* adj3 transition adj3 adult*)) IN DARE, NHSEED, HTA

190. ((teenage* adj3 transition adj3 adult*)) IN DARE, NHSEED, HTA

191. ((paediatric* adj3 transition adj3 adult*)) IN DARE, NHSEED, HTA

192. ((pediatric* adj3 transition adj3 adult)) IN DARE, NHSEED, HTA

193. (“college student*”) IN DARE, NHSEED, HTA

194. (“university student*”) IN DARE, NHSEED, HTA

195. (“post-secondary student*”) IN DARE, NHSEED, HTA

196. (undergraduate*) IN DARE, NHSEED, HTA

197. (postgraduate*) IN DARE, NHSEED, HTA

198. (famil*) IN DARE, NHSEED, HTA

199. (carer*) IN DARE, NHSEED, HTA

200. (caregiver*) IN DARE, NHSEED, HTA

201. (parent*) IN DARE, NHSEED, HTA

202. (grandparent*) IN DARE, NHSEED, HTA

203. (relative*) IN DARE, NHSEED, HTA

204. (relation*) IN DARE, NHSEED, HTA

205. (sibling*) IN DARE, NHSEED, HTA

206. #176 OR #177 OR #178 OR #179 OR #180 OR #181 OR #182 OR #183 OR #184 OR #185 OR #186 OR #187 OR #188 OR #189 OR #190 OR #191 OR #192 OR #193 OR #194 OR #195 OR #196 OR #197 OR #198 OR #199 OR #200 OR #201 OR #202 OR #203 OR #204 OR #205

207. #175 AND #206

208. (#207) IN DARE, NHSEED, HTA FROM 2002 TO 2018

Search strategy

1. # 1 TOPIC: (“day* away” OR “day care*” OR “day centre*” OR “day center*” OR “day program*” OR “day service*” OR holiday* OR “home support*” OR hospice* OR “intermediate care” OR “night care*” OR “night-time care*” OR “partial hospitalisation*” OR “partial hospitalization*” OR “relief care*” OR “relief support” OR “residential care*” OR “residential home*” OR “residential facilit*” OR respite* OR “short break*” OR “short stay*” OR “sitting service*” OR “support program*” OR “support scheme*” OR “support service*” OR “temporary admission*” OR “temporary break*” OR “temporary care*” OR “temporary relief” OR “temporary support*” OR “short-term admission*” OR “short-term break*” OR “short-term care*” OR “short-term relief” OR “short-term support*” OR “time off” OR vacation* OR “care service*” OR “overnight stay*” OR “home-based support*” OR “befriend* service*” OR “short-break foster*” OR “adult placement scheme*” OR “shared care” OR “replacement care” OR “family support”)

2. # 2 TOPIC: (advanc* NEAR/3 disease* OR advanc* NEAR/3 illness* OR advanc* NEAR/3 condition* OR advanc* NEAR/3 disorder* OR advanc* NEAR/3 abnormalit* OR advanc* NEAR/3 impairment* OR advanc* NEAR/3 handicap* OR degenerative NEAR/3 disease* OR degenerative NEAR/3 illness* OR degenerative NEAR/3 condition* OR degenerative NEAR/3 disorder* OR degenerative NEAR/3 abnormalit* OR degenerative NEAR/3 impairment* OR degenerative NEAR/3 handicap* OR progressive NEAR/3 disease* OR progressive NEAR/3 illness* OR progressive NEAR/3 condition* OR progressive NEAR/3 disorder* OR progressive NEAR/3 abnormalit* OR progressive NEAR/3 impairment* OR progressive NEAR/3 handicap* OR “diminished life expectancy” OR “limited life expectancy” OR cancer* OR duchenne OR dying OR “end of life” OR “end stage renal failure” OR “end stage liver failure” OR “heart failure” OR incurable OR life-limit* OR “life limit*” OR life NEAR/3 short* OR live* NEAR/3 short* OR “life threaten*” OR “limited life expectancy” OR LLC OR LLI OR “muscular dystroph*” OR neoplasm*.ti,ab OR “neurodegenerative condition*” OR “neurodegenerative disease*” OR “neurodegenerative illness*” OR “neurodegenerative disorder*” OR “neurodegenerative abnormalit*” OR “neurodegenerative impairment*” OR “neurodegenerative handicap*” OR oncology OR palliative OR “poor prognosis” OR serious* NEAR/3 ill* OR terminal* NEAR/3 ill* OR terminal* NEAR/3 care* OR terminal* NEAR/3 disease* OR terminal* NEAR/3 condition* OR terminal* NEAR/3 disorder* OR terminal* NEAR/3 abnormalit* OR terminal* NEAR/3 impairment* OR terminal* NEAR/3 handicap* OR genetic NEAR/3 disease* OR genetic NEAR/3 disorder* OR genetic NEAR/3 illness* OR genetic NEAR/3 condition* OR genetic NEAR/3 abnormalit* OR genetic NEAR/3 impairment* OR genetic NEAR/3 handicap* OR chromosomal NEAR/3 disease* OR chromosomal NEAR/3 illness* OR chromosomal NEAR/3 disorder* OR chromosomal NEAR/3 condition* OR chromosomal NEAR/3 abnormalit* OR chromosomal NEAR/3 impairment* OR chromosomal NEAR/3 handicap* OR congenital NEAR/3 disease* OR congenital NEAR/3 illness* OR congenital NEAR/3 disorder* OR congenital NEAR/3 condition* OR congenital NEAR/3 abnormalit* OR congenital NEAR/3 impairment* OR congenital NEAR/3 handicap* OR complex NEAR/3 health* NEAR/3 need* OR “early death*” OR “cerebral pals*” OR “spina bifida” OR “cystic fibrosis” OR encephalopath* OR disabilit* OR disabled OR handicap* OR spastic* OR “impaired motor skill*” OR “spinal cord condition*” OR “multiple trauma” OR “acquired brain injur*” OR “neurological condition*” OR “neuromuscular condition*” OR “multi-organ disease*” OR neurodisabilit*)

3. # 3 #2 AND #1

4. # 4 TOPIC: (“young adult*” OR “young person” OR “young people” OR youth* OR “emerg* adult*” OR “early adult*” OR (child* NEAR/3 transition NEAR/3 adult*) OR (adolescen* NEAR/3 transition NEAR/3 adult*) OR (teenage* NEAR/3 transition NEAR/3 adult*) OR (paediatric* NEAR/3 transition NEAR/3 adult*) OR (pediatric* NEAR/3 transition NEAR/3 adult) OR “college student*” OR “university student*” OR “post-secondary student*” OR undergraduate* OR postgraduate* OR famil* OR carer* OR caregiver* OR parent* OR grandparent* OR relative* OR relation* OR sibling*)

5. # 5 #4 AND #3

Timespan = 2002–18

Search strategy

[SubjectTerms:’”short break care”‘ including this term only OR SubjectTerms:’”intermediate care”‘ including this term only OR SubjectTerms:’”hospices”‘ including this term only OR SubjectTerms:’”holidays”‘ including this term only OR AllFields:’respite* or “short break*” or hospice*’]

AND

[SubjectTerms:’”palliative care”‘ including this term only OR SubjectTerms:’”terminal illness”‘ including this term only OR SubjectTerms:’”muscular dystrophy”‘ including this term only OR SubjectTerms:’”cancer”‘ including this term only OR SubjectTerms:’”cerebral palsy”‘ including this term only OR SubjectTerms:’”spina bifida”‘ including this term only OR SubjectTerms:’”cystic fibrosis”‘ including this term only OR SubjectTerms:’”disabilities”‘ including this term only OR SubjectTerms:’”complex needs”‘ including this term only OR SubjectTerms:’”long term conditions”‘ including this term only OR AllFields:’”life limit*” OR “life-limit*” OR “life shorten*” OR “complex health* need*” or “complex need*” or disabilit* or disabled’]

AND

[SubjectTerms:’”young adults”‘ including this term only OR SubjectTerms:’”young people”‘ including this term only OR SubjectTerms:’”adults”‘ including this term only OR SubjectTerms:’”carers”‘ including this term only OR SubjectTerms:’”families”‘ including this term only OR SubjectTerms:’”parents”‘ including this term only OR SubjectTerms:’”siblings”‘ including this term only OR SubjectTerms:’”grandparents”‘ including this term only OR AllFields:’”young adult*” or “young person” or “young people” or famil* or carer* or caregiver* or parent*’]

Search strategy

((“day* away” OR “day care*” OR “day centre*” OR “day center*” OR “day program*” OR “day service*” OR holiday* OR “home support*” OR hospice* OR “intermediate care” OR “night care*” OR “night-time care*” OR “partial hospitalisation*” OR “partial hospitalization*” OR “relief care*” OR “relief support” OR “residential care*” OR “residential home*” OR “residential facilit*” OR respite* OR “short break*” OR “short stay*” OR “sitting service*” OR “support program*” OR “support scheme*” OR “support service*” OR “temporary admission*” OR “temporary break*” OR “temporary care*” OR “temporary relief” OR “temporary support*” OR “short-term admission*” OR “short-term break*” OR “short-term care*” OR “short-term relief” OR “short-term support*” OR “time off” OR vacation* OR “care service*” OR “overnight stay*” OR “home-based support*” OR “befriend* service*” OR “short-break foster*” OR “adult placement scheme*” OR “shared care” OR “replacement care” OR “family support”) AND (“life-limit*” OR “life limit*” OR “life shorten*” OR “complex health* need*” OR “complex need*” OR disab*) AND (“young adult*” or “young person” or “young people” or famil* or carer* or caregiver* or parent*)) (from:2002 to:2018)

Search strategy

(respite* OR “short break*” OR hospice*) AND (“life-limit*” OR “life limit*” OR “life shorten*” OR “complex health* need*” OR “complex need*” OR disab*)

Search strategy

(“day* away” OR “day care*” OR “day centre*” OR “day center*” OR “day program*” OR “day service*” OR holiday* OR “home support*” OR hospice* OR “intermediate care” OR “night care*” OR “night-time care*” OR “partial hospitalisation*” OR “partial hospitalization*” OR “relief care*” OR “relief support” OR “residential care*” OR “residential home*” OR “residential facilit*” OR respite* OR “short break*” OR “short stay*” OR “sitting service*” OR “support program*” OR “support scheme*” OR “support service*” OR “temporary admission*” OR “temporary break*” OR “temporary care*” OR “temporary relief” OR “temporary support*” OR “short-term admission*” OR “short-term break*” OR “short-term care*” OR “short-term relief” OR “short-term support*” OR “time off” OR vacation* OR “care service*” OR “overnight stay*” OR “home-based support*” OR “befriend* service*” OR “short-break foster*” OR “adult placement scheme*” OR “shared care” OR “replacement care” OR “family support”)

Search strategy

“day away” OR “day care” OR “day centre” OR “day center” OR “day program” OR “day service” OR holiday OR “home support” OR hospice OR “intermediate care” OR “night care” OR “night-time care” OR “partial hospitalisation” OR “partial hospitalization” OR “relief care” OR “relief support” OR “residential care” OR “residential home” OR “residential facility” OR respite OR “short break” OR “short stay” OR “sitting service” OR “support program” OR “support scheme” OR “support service” OR “temporary admission” OR “temporary break” OR “temporary care” OR “temporary relief” OR “temporary support” OR “short-term admission” OR “short-term break” OR “short-term care” OR “short-term relief” OR “short-term support” OR “time off” OR vacation OR “care service” OR “overnight stay” OR “home-based support” OR “befriending service” OR “short-break foster” OR “adult placement scheme” OR “shared care” OR “replacement care” OR “family support”

Search strategy

respite OR “short break” OR hospice | Child, Adult | Start date from 01/01/2002 to 01/09/2020

Search strategy

Search 1: respite* OR “short breaks” OR hospice*

Search 2: “life limiting” OR “life-limiting” OR “life shortening” OR “complex health needs” OR “complex healthcare needs” OR “complex needs” OR disabilities OR disability OR disabled

Search strategy

Search 1: respite

Search 2: short break

Search 3: hospice

Search strategy

(respite* OR “short break*” OR hospice*) AND (“life limit*” OR “life limit*” OR “life shorten*” OR “complex health* need*” OR “complex need*” OR disab*)

Search strategy

Respite life-limiting “young adult”

Respite life-limiting “young adults”

“short breaks” life-limiting “young adult”

“short breaks” life-limiting “young adults”

Respite “complex health needs” “young adult”

Respite “complex health needs” “young adults”

“short breaks” “complex health needs” “young adult”

“short breaks” “complex health needs” “young adults”

Respite “complex healthcare needs” “young adult”

Respite “complex healthcare needs” “young adults”

“short breaks” “complex healthcare needs” “young adult”

“short breaks” “complex healthcare needs” “young adults”

Respite life-limiting “young person”

Respite life-limiting “young people”

“short breaks” life-limiting “young person”

“short breaks” life-limiting “young people”

Respite “complex health needs” “young person”

Respite “complex health needs” “young people”

“short breaks” “complex health needs” “young person”

“short breaks” “complex health needs” “young people”

Respite “complex healthcare needs” “young person”

Respite “complex healthcare needs” “young people”

“short breaks” “complex healthcare needs” “young person”

“short breaks” “complex healthcare needs” “young people”