Article Text

Original research
Social prescribing for children and young people with neurodisability and their families initiated in a hospital setting: a systematic review
  1. Katie Gordon1,
  2. Laura Gordon2,
  3. Anna Purna Basu2,3
  1. 1School of Psychology, Newcastle University, Newcastle upon Tyne, Tyne and Wear, UK
  2. 2Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, Tyne and Wear, UK
  3. 3Paediatric Neurology, Great North Childrens Hospital, Newcastle upon Tyne, Tyne and Wear, UK
  1. Correspondence to Dr Anna Purna Basu; anna.basu{at}newcastle.ac.uk

Abstract

Objectives Social prescribing (SP) is a non-medical intervention in which professionals refer patients to a link worker (LW), who connects them with appropriate support. Children and young people (CYP) with neurodisability often have unmet needs and may bypass community initiatives. We undertook a review of hospital-initiated SP for CYP with neurodisability.

Design Systematic review following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidance and using Mixed Methods Appraisal Tool.

Data sources Medline, PsycINFO, PsycARTICLES, Embase, CINAHL, Scopus, Web of Science and FutureNHS, searched from 1 January 2000 to 19 October 2023, with no language restrictions.

Eligibility criteria Studies describing SP interventions for CYP (ages 0–25 years) with neurodisability/neurodivergence. Exclusions: interventions outside of secondary care; with no description; or no LW.

Data extraction and synthesis Two researchers independently screened references. Data were charted, summarised, quality assessments performed and narratively reviewed.

Results After removal of duplicates, 518 references were identified. Following screening, eight articles (covering five SP schemes) were included. Rahi et al connected 68 families of CYP newly diagnosed with visual impairment to a community LW. Families needed information about social and educational services, and emotional support. Healthcare professionals had more time for clinical issues. Six papers described three different digital interventions supporting in total 86 CYP with traumatic brain injury and their families. Wade et al (2004, 2005a, 2005b) provided a website with core and individualised sessions, and weekly therapist support. Wade et al (2018) provided a smartphone application, website and weekly meetings with an online coach. These interventions boosted social behaviours. Wade et al (2014, 2015) found that online family problem-solving therapy improved overall child functioning compared with self-guided resources. Toutain et al (2009) provided non-medical support to 11 children with fetal alcohol syndrome and their mothers. No outcome data were provided. Studies reported benefits to health, well-being, healthcare usage, knowledge, skills, satisfaction and service delivery.

Conclusion Literature describing hospital-initiated SP schemes for CYP with neurodisability, while sparse, suggests potential benefit.

PROSPERO registration number CRD42022384188.

  • Developmental neurology & neurodisability
  • Adolescent
  • Community child health
  • SOCIAL MEDICINE

Data availability statement

No data are available.

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STRENGTHS AND LIMITATIONS OF THIS STUDY

  • Reduced systematic bias and human error due to two researchers screening independently.

  • Included grey literature search and was not limited geographically or by language.

  • Study heterogeneity precluded meta-analysis.

Introduction

Social prescribing (SP) is a non-medical intervention which involves professionals referring patients to a link worker, who connects them with appropriate (eg, financial, social, mental well-being or practical) support.1 To achieve this, the link worker takes time to understand their client’s agenda (often expressed in lay terms as ‘what matters to me?’) and develops a holistic, personalised plan to address their needs. Link worker roles are varied but include identifying and signposting to existing services, support with initial attendance at services and, where necessary, helping to increase accessibility of community groups to clients with additional needs, or identifying and addressing gaps in service provision.

A theorised mechanism of change of SP is salutogenesis (promoting health and well-being). Central to salutogenesis is the strengthening of a person’s sense of coherence, which is the ability to make sense of a situation and act accordingly, accessing appropriate resources as required. This sense of coherence can be diminished by adverse life circumstances; SP may support clients to rebuild it.2 Another key feature of SP is to help build social capital which is an important positive social determinant of health. Social capital describes ‘the extent and nature of our connections with others and the collective attitudes and behaviours between people that support a well-functioning, close-knit society’.3

SP is recognised by NHS England as a key component of ‘Universal Personalised Care’ and is endorsed for a wide range of situations such as long-term conditions, social issues and mental health needs (https://www.england.nhs.uk/personalisedcare/social-prescribing/). A recent review of SP in later life found evidence of increased social connections, improvements in self-management and health status including mental health and well-being.4 SP can have benefits for quality of life and healthcare utilisation5; however, the predominant focus is on adults and in the community. A previous review found insufficient evidence regarding the effect of SP on mental health and/or well-being in children.6 More recently, Bertotti et al (2022) came to a similar conclusion, urging the inclusion of resources and SP schemes for children and their robust evaluation.7

Chronic health conditions are associated with an increased risk of emotional problems in children.8 Children and young people (CYP) with neurodisability often have high levels of unmet non-medical needs and reduced social participation.9 Interventions promoting social participation for this group could improve mental well-being. Young people with neurodisability expressed the need for their psychological and physical safety to be secured during interventions—this is indicative of the additional challenges to participation faced by this group.10 Families of CYP with neurodisability often experience financial pressures11 and have difficulty accessing community services.12 Gaps in community provision, and challenges in accessing community services, need to be considered when attempting to provide SP for this group.13 One way to overcome these issues is to identify CYP with neurodisability and their families who could benefit from SP schemes, while they are in a hospital or secondary care setting. This review aimed to explore the existing literature on use of SP for CYP with neurodisability, identified within a hospital setting.

Methods

This review was conducted in accordance with PRISMA guidance.14 Details of the protocol for this systematic review were registered on PROSPERO (CRD42022384188).

Eligibility criteria

We included studies published between 1 January 2000 and 19 October 2023 in any language. We planned to use Google Translate for papers not originally published in the English language, but ultimately all included papers were in English. The year 2000 was chosen as the search start date as the 2000 World Health report highlighted the importance of individuals taking active participation in their health and well-being, heightening universal interest in SP interventions.15

We included studies of SP as an intervention for CYP (aged 0–25, aligning with the age range for CYP used in the NHS Long Term Plan), with neurodisabilities/neurodivergence. The term neurodisability describes ‘a group of congenital or acquired long-term conditions that are attributed to impairment of the brain and/or neuromuscular system and create functional limitations. A specific diagnosis may not be identified. Conditions may vary over time, occur alone or in combination, and include a broad range of severity and complexity. The impact may include difficulties with movement, cognition, hearing and vision, communication, emotion, and behaviour’.16 The terminology is imperfect, and some people prefer to self-identify as neurodivergent; therefore, the inclusion criteria were changed to include this term.

Studies were eligible regardless of whether there was a comparison group, and could be qualitative, quantitative or mixed methods. We excluded studies which did not describe an SP programme, and those which did not include some form of link worker. The primary outcomes of interest were health and well-being, including self-report measures, for example, mental health questionnaires, and usage of health services. The search was not limited geographically but excluded SP interventions not involving secondary care settings.

Information sources and search strategy

We searched seven electronic databases: Medline, PsycINFO, PsycARTICLES, EMBASE, CINAHL, Scopus and Web of Science. We also searched for grey literature on the FutureNHS collaborative platform. Reference lists of retrieved articles were scanned to identify additional studies.

Search strategies were developed using medical subject headings and words related to ‘social prescribing’, ‘child’, ‘neuro-disability’ and ‘hospital’. Terms within domains were combined using Boolean operator ‘OR’ and resulting sets combined using ‘AND’. The final search string was entered into Medline, then adapted and used in each of the seven databases, and FutureNHS platform (online supplemental table 1).

Study selection and data extraction

Literature search results were uploaded to EndNote (V.20.4, Clarivate, Philadelphia, Pennsylvania, 2013). After eliminating duplicates, two researchers (KG and LG) independently screened the titles and abstracts against the inclusion criteria. Full texts were screened for any titles and abstracts where there was uncertainty, and additional support was sought from APB. KG and LG independently screened all full texts of papers appearing to meet inclusion criteria, and charted the following data in Excel (V.16.66.1, Microsoft Corporation): title, author/s, year published, study type, rationale, participant information (age, gender, details of neurodisability/neurodivergence), setting, intervention and a detailed summary of the findings/outcomes. Reasons for excluding studies were recorded, and a PRISMA flow chart was created (figure 1). To ensure no studies were missing, relevant titles from the reference lists of the included articles were examined in the same way as above (title, abstract, full text).

Figure 1

Flow chart developed according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.

Quality assessment and data synthesis/analysis

We planned to use the CASP checklists (casp-uk.net) for quality assessment; however, as the checklists were not suited to the study types of the papers identified, we used the Mixed Methods Appraisal Tool, choosing the relevant tool for each study type.17 We did not exclude based on methodological quality as we wanted to capture all available evidence. Due to the heterogeneity of study types, a meta-analysis was not appropriate. Study characteristics and findings including both qualitative and quantitative outcomes were presented in tables and summarised narratively following Cochrane handbook guidance.18

Patient and public involvement

None.

Results

Study selection

The initial search on 8 December 2022 identified 594 references. We reran the search on 19 October 2023 and found no new articles. Of the 594 references initially identified, 76 were duplicates and were removed. Five hundred eighteen abstracts underwent screening, and four papers were included in the review. Four additional references were identified via the reference lists of included papers. Primarily, papers were excluded during screening because they did not describe an SP scheme with a link worker. Additionally, studies not including children, neurological disorders and/or not involving a secondary care setting were excluded (figure 1).

Study characteristics

The eight papers identified describe five SP interventions conducted between 2004 and 2018. In addition to the UK, our search identified interventions implemented in USA and France. The services supported a total of 163 participants (aged 0–22 years). Three studies recruited participants with brain injury,19–24 one studied participants with visual impairment,25 and one studied participants with fetal alcohol syndrome.26 The corresponding author of the paper studying participants with visual impairment was contacted and confirmed that the study included participants with neurological disorders/neurodivergence, as this had not been specified within the manuscript.25 While the authors did not specify the proportion of participants thus affected, neurological disorders are frequently comorbid with visual impairment: in 1 report, 48% of visually impaired children also had disorders of the brain and visual pathways.27 All participants were identified via hospital databases. Three different study designs were used (mixed methods, quantitative non-randomised and quantitative randomised clinical trial). Table 1 summarises study population and settings; table 2 describes study interventions and assessments.

Table 1

Study populations and settings

Table 2

Study interventions and assessments

Six papers studied participants with brain injury; three described the same ‘web-based intervention’ study.19–21 The corresponding author was contacted due to discrepancies in the mean age of participants and some of the outcomes. It was confirmed that the same sample was studied in all three papers; discrepancies were attributed to whether those who did not complete the intervention were included in the summary statistics. The study aimed to examine the effectiveness of a web-based intervention for children with traumatic brain injury by assessing satisfaction, helpfulness, ease of use, feasibility, quality of relationship with therapist, therapist experience, social competence, antisocial behaviour problems, attention, impulse control, depression, parent–child interaction and general functioning. Baseline assessment was carried out with the therapist in the family home. Families used a computer to independently complete core sessions (focused on communication, behavioural management and problem solving) and individualised sessions based on their needs. Subsequent weekly online meetings with the therapist were scheduled, in which they answered questions, reviewed the completed material, and implemented the learnt processes with a problem identified by the family. They were assessed using scales, questionnaires and interviews. Scales and questionnaires used included the Family Assessment Device,28 Family Burden of Injury Interview,29 Home and Community Social Behaviour Scale,30 Behaviour Rating Inventory of Executive Function,31 Children’s Depression Inventory,32 Interaction Behaviour Questionnaire,33 Agnew Relationship Measure (ARM)34 and the 10-item School Conflict scale of the Parent-Adolescent Relationship Questionnaire PARQ.35 Likert items were created regarding global family problem solving, communication and behaviour management in the past month, to assess need for individualised sessions. They assessed comfort with the technology used throughout using a bespoke online satisfaction survey (OSS) and the Comfort with Technology Scale.36 They used the Website Evaluation Questionnaire adapted from the Website Evaluation Instrument.37 Finally, they examined parental well-being using the Symptom Checklist-90-R38 for parental distress, Center for Epidemiologic Studies Depression Scale,39 10-item State-trait Anxiety Inventory40 and Parenting Stress Index.41

Of the remaining three papers studying participants with brain injury, two describe the same study.22 23 The aim of the study was to assess the effectiveness of an online problem-solving therapy. Participants were randomly assigned to one of two groups: Counsellor-Assisted Problem Solving (CAPS) or Internet Resource Comparison (IRC). Researchers compared problematic day-to-day behaviours, attention and aggression, attention-deficit hyperactivity disorder (ADHD), conduct disorder, every day and cognitive functioning, and service usage at baseline and 6, 12 and 18 months. Scales and questionnaires used included the Child Behaviour Checklist (CBCL),42 Child and Adolescent Functional Assessment (CAFAS)43 and the Wechsler Intelligence scale for Children44 or Wechsler Adult Intelligence Scale.45 Baseline assessments were performed by the therapist in the family home. The CAPS group were initially assigned self-guided materials on a computer focused on problem-solving skills, video clips modelling the skill, and exercises allowing the family to practise the skill; after 3 months, they were assigned individualised sessions based on their need. Throughout the intervention, families also had videoconference sessions with the therapist. The IRC group were given access to online resources (eg, links to national brain injury associations and sites specific to paediatric brain injury); however, they were not assigned specific sessions and did not meet with a therapist.

The final paper studying participants with brain injury focused on the individual rather than the family.24 They aimed to assess the effectiveness of the Social Participation and Navigation (SPAN) programme—an application-based coaching intervention. Researchers assessed feasibility, ease of use, satisfaction, social participation, self-efficacy, social competence, and participant goals using scales, questionnaires and content analyses of coach session notes. Scales and questionnaires used included the Youth Self-Report and the CBCL42 or the Adult Self-Report and the Adult Behaviour Checklist46 as well as bespoke scales for measures of self-efficacy, satisfaction and participation. They provided participants with a smartphone, access to a website and virtually introduced them to a ‘coach’ (who fulfilled the role of link worker). Participants used a smartphone application to answer questions about their social participation. They then had 10 weekly sessions via videoconference, in which the ‘coach’ helped them identify goals, action plans, barriers and additional resources. Participants were reassessed on completion of the intervention, an average of 19 weeks later, and researchers compared these results to baseline.

Of the remaining two papers, one evaluated a Community Link Team (CLT) intervention for families of children with newly diagnosed visual impairment.25 The CLT member met the family at their first outpatient assessment and provided them with information and support where necessary. Researchers assessed satisfaction using the Client Satisfaction Questionnaire47 and family centeredness using the Measure of Processes of Care,48 and conducted in-depth interviews 12–18 months after the child received a diagnosis. The views of families who had received the intervention were compared with those who had received a visual impairment diagnosis prior to the existence of the intervention; additionally, the views of healthcare professionals on the intervention were assessed via interviews.

The final paper describes an intervention for mothers and children with fetal alcohol syndrome.26 The study aimed to investigate different ways to manage the child after discharge from hospital, however no outcomes regarding the effectiveness of the intervention were reported. The intervention involved services such as parent–child groups, counselling and support with child education and development. The families were monitored by a psychologist, social guidance counsellor and/or speech therapist.

Intervention effects

Our review was concerned with studies examining the impact of SP on health, well-being and healthcare usage. Of the included studies, other outcomes reported were changes in knowledge and skills, satisfaction with intervention and service delivery. One study did not produce outcome data relevant to this review.26 Table 3 summarises outcomes for the other studies.

Table 3

Summary of key study findings

Health and well-being

The CAFAS43 was used in the CAPS study to assess functioning in everyday settings. They reported an improvement at the final visit only (18 months) compared with participants who received information alone23: this effect was (just) statistically significant (p=0.04). Two studies used the CBCL42 to assess problematic behaviours in day-to-day life. The CAPS study22 reported significantly lower levels of externalising symptoms, aggression, attention problems, ADHD and Conduct disorder symptoms, but only in older adolescents. The SPAN study also reported improvement in externalising, internalising and social problems.24 In the web-based intervention study, interviews indicated decreased isolation, decreased stress and a sense of closure.19–21

Two interventions were reported to lead to changes in social participation and connectivity. The SPAN study used a Likert scale (developed for the project) to assess social participation.24 They reported significantly greater confidence in participation and development of social participation goals, and a greater parent-reported frequency of social participation postintervention than preintervention. The same study was unable to find any significant differences in social competence postintervention versus preintervention. The second study (web-based intervention) used interview data to highlight improved relationships with parents and siblings.19 20

Healthcare usage

No studies formally assessed changes in healthcare utilisation. However, interviews in the CLT study revealed healthcare professionals felt supported by the link workers.25 Healthcare professionals were able to delegate activities to the link workers (eg, connecting people to mental health support), which meant that they had more time for clinical issues.

Knowledge and skills

None of the included studies used validated tools to measure knowledge and skills outcomes. In the CLT study, parents reported in interviews that they were provided with information relating to educational, social and other services, and information on how to contact parent support groups.25 The web-based intervention study found information about diagnosis to be most helpful, with all parents and siblings, and 83.3% of children reporting an improved understanding of the child’s medical condition during interviews.19

Satisfaction

A short form of the Client Satisfaction Questionnaire47 was used in the CLT study to assess parental satisfaction with the intervention compared with a group who did not receive this intervention; however, this yielded no statistically significant results.25 Using interviews, parents in the web-based intervention study identified the convenience of meeting in their home as an influencer of satisfaction.19 Ninety-three per cent of participants in the CAPS study,22 90% of participants in the web-based intervention study,19 20 and 58% of participants in the SPAN study24 rated the programme as helpful. In the web-based intervention study, interview data revealed that families found the intervention more helpful for coping with the sequelae of brain injury than previous interventions (eg, psychotherapy and traumatic brain injury specialist input). This was due to the frequent link worker feedback and positive, skill-building emphasis.19 Interestingly, both the web-based intervention study and the SPAN study reported better ratings from parents than children.19 20 24 94.7% of participants said they would recommend the web-based intervention programme.19 20

Service delivery

Three interventions were delivered digitally: the ‘web-based intervention study’,19–21 the CAPS study22 23 and the SPAN study.24 Both the web-based intervention and CAPS involved an initial face-to-face meeting with the link worker; the SPAN programme used only virtual meetings. In the web-based intervention study, participants in interviews reported initial face-to-face contact as critical for building comfort and trust with the link workers. However, 63% of participants reported a preference for online meetings over alternative methods. Similarly, in the CAPS study 96% of participants reported online meetings as easy to use, compared with a phone call (94%) or face-to-face visit (90%). Children reported in interviews that they found web-based interventions more ‘relaxed’ than face-to-face interventions and preferred avoiding long car trips to appointments. However, in the same study, children reported finding it harder to listen and pay attention in online meetings. Interestingly, this study also addressed the link worker’s experience.19 It was reported that 20% of sessions were rescheduled due to technical issues. Issues with hearing and seeing all family members at times on the videoconference were also reported.

The CLT study concluded from interviews that it was essential for the link worker to be identified early as the family’s point of contact.25 In the web-based intervention study, the ARM34 indicated that parents had high levels of confidence in the link worker and their skills and were comfortable in expressing themselves to the link worker. Additionally, on the OSS children reported the link worker as caring.19 The SPAN study found the link workers were rated as the best aspect of the intervention; all but one parent rated them as easy or very easy to work with.24 In the CAPS study, parents reported in interviews that it was difficult to participate while dealing with their child’s continuing medical complications (eg, seizures and further operations).22

Quality of the evidence

Study quality assessment outcomes are summarised in table 1. Both CAPS papers were high quality,22 23 the SPAN paper and one of the web-based intervention papers were medium quality,21 24 and the remaining four papers were low quality.19 20 25 26 The low-quality papers fulfilled only 55% of their criteria on average. All the low-quality papers were assessed with the mixed methods checklist; three out of four were affected by inadequacies of the qualitative components.19 20 25 They failed to explain their approach to qualitative analysis and their qualitative outcomes appropriately. The final low-quality paper scored 0/5 on the mixed methods checklist, failing to provide sufficient information regarding the rationale, study components, outputs, and any divergence between qualitative and quantitative components.26 The medium quality papers both fulfilled 80% of their criteria using the quantitative non-randomised checklist.21 24 Both papers had small sample sizes.21 24 The high-quality papers fulfilled 100% of their criteria using the quantitative randomised controlled trials checklist.22 23

Discussion

Summary of findings

The aim of this review was to assess the available literature on SP schemes initiated in hospital settings for children with neurodisability. Eight papers describing five SP interventions initiated across the UK, USA, and France were identified. All but one paper aimed to investigate the effectiveness of a proposed intervention; one was descriptive only.26 The programmes all involved a link worker figure and were provided to CYP aged 0–22 years. Interventions targeted people with brain injury, fetal alcohol syndrome, and visual impairment. Three interventions were digital; two were face to face. All papers reporting outcome data described benefits to health and well-being, knowledge and skills, satisfaction and/or service delivery. The findings build on existing knowledge of SP schemes by focussing on resources for children: this remains an under-researched area.6 7

Findings are limited by the small sample size and study quality including poor reporting of results. Weaknesses included missing information regarding participants who declined to take part, details on how data were analysed, and specifically in mixed methods papers, details on how qualitative and quantitative components were integrated. Furthermore, studies reporting differences in outcome ratings between children and parents do not explore the potential reasons for these differences.19 20 24 For example, it is not clear whether children and their parents completed such outcome ratings independently; if not, it is possible that responses were influenced by being completed in the presence of a family member. Qualitative interviewing could be used to explore differences in perceived outcomes between family members in future studies.

Another common limitation of the included papers is the lack of control for confounding factors, which means that the outcomes must be attributed to the intervention with caution. This should be considered in future research as papers report participants to be receiving other interventions at the time of referral.23 It would be unethical to restrict concurrent interventions; randomisation to a SP intervention or control group is also ethically contentious as it would essentially ‘preclude patients accessing voluntary and community services to improve their health’.49 Additionally social determinants of health such as parental education and income have been found to impact health and social outcomes in children with cerebral palsy.50 Clearly, SP initiatives are not a panacea and cannot compensate for all adverse social determinants of health. We recommend that adequate baseline data relating to social determinants of health and concurrent interventions are consistently collected, sample size is appropriate to address the study aims and that qualitative evaluation is included to capture in-depth insights into components of the intervention perceived to be of greatest benefit. Capture of common data elements across studies would facilitate comparison and collation of findings across studies.

Our review failed to find any changes in healthcare utilisation; previous literature is also ambiguous in this respect.4 Children with neurodisability have higher healthcare utilisation than typically developing children51 and it is likely that while SP schemes support non-medical aspects of well-being, the underlying medical needs can only be partially addressed with this approach. Furthermore, our review found no changes in physical health, though previous reviews have reported such changes.4 This may be due to the high levels of medical need in the population we studied.52

Strengths and limitations

This systematic review is the first to assess SP in a hospital setting for CYP with neurodisability. The literature search was thorough and included the grey literature, as well as publications in any country and any language. Two researchers screened papers, reducing the risks of systematic bias and human error.

SP is a rapidly developing field, so the findings of this review are a ‘snapshot’ of the current literature. Quality appraisals were undertaken for each paper, but studies were not excluded based on methodological quality. Furthermore, quantification and meta-analysis were not possible due to study and assessment tool heterogeneity. However, the inclusion of in-depth interviews in several of the studies captured valuable evaluative information.

Lack of precise definitions of SP roles, and variability in job descriptions add to the challenge of collating data in this field. One paper24 described using ‘coaches’—however, these were not formally accredited as coaches, and they met with children and families to help them identify and address their self-identified social participation goals. This focus on social participation (facilitating engagement in self-identified new activities and social events for example) aligns with the link worker role. There is however some overlap between the link worker role and coaching skills such as motivational interviewing.

Implications and future research

The current review suggests that SP programmes initiated in secondary care settings for children with neurodisability have potential benefit. However, due to the weak evidence base, we are unable to identify which components of the programmes are most effective, and why. Past reviews have highlighted a need for improvement in the ways SP schemes are evaluated.53 This need is still very much present and is a particular challenge for specialised SP schemes (eg, those for children with neurodisability) where there are often small sample sizes and no single clear choice of primary outcome measure as evidenced by our review. Issues raised more generally about SP evaluations relate to small-scale evaluations with poor design and reporting, missing information, a lack of comparators, incomplete and/or short duration follow-up, inappropriate measuring tools and a lack of consideration or adjustment for confounders.53 Bickerdike et al propose the use of a common analytical framework for evaluation of SP programmes, and the use of reporting guidelines for transparency.53 To this, we would add the importance of detailed qualitative evaluations to enhance our understanding of the nature of the key ingredients of the SP process.

Most papers reported having a link worker as an essential component. However, the link worker role varied between programmes, and so we cannot reliably report what contributes to the successful link worker role. In January 2023, NHS England published the workforce development framework for SP link workers which provides standards and guidance for link workers and their employers and aims to improve the quality and consistency of SP interventions (publication reference B1570). The framework suggests four competency areas: engage and connect with people, enable and support people, enable community development, and safe and effective practice. For those working with children, especially children with additional needs, it is likely that further competencies are required. For example, children with neurodisability may have specific communication difficulties or may be non-verbal and therefore it is important to have additional competencies in communication skills when working with them. Other considerations for adapting SP interventions for children with neurodisability such as the need to rely sometimes on parental/proxy information regarding the child’s needs and wishes; and the need to find accessible, appropriate community resources for the child who may have significant mobility issues. Safeguarding issues are also paramount. The impact of the child’s condition on the whole family should be considered and a family-based approach may be particularly appropriate. One of the authors of this systematic review is a child neurologist, who regularly encounters children with neurodisability with important unmet non-medical needs. The motivation for this review was to understand what is already described in the literature in terms of SP schemes for children with neurodisability, to inform development of a pilot intervention aiming to support this group of children and their families as effectively as possible. This local pilot intervention is underway and includes a mixed methods evaluation (https://waystowellness.org.uk/projects/space-pilot/). We are aware of one other similar study: Ostojic et al50 have recently published a protocol for a study in Australia involving children with cerebral palsy, their parents and clinicians codesigning an SP programme to address the social determinants of health concerns.50

Conclusion

Overall, there is very little literature describing hospital-initiated SP schemes for children with neurodisability. Of the available evidence, outcomes are provisionally positive regarding health and well-being, knowledge and skills, service delivery and satisfaction with the intervention. Due to the small number of included studies, and rapid development of the field, further research on the components and outcomes of SP for children with neurodisability is required.

Data availability statement

No data are available.

Ethics statements

Patient consent for publication

Ethics approval

Not applicable.

References

Supplementary materials

  • Supplementary Data

    This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

Footnotes

  • Twitter @AnnaBasu1

  • Contributors KG: drafted protocol, undertook systematic review with supervision, wrote first draft of manuscript, critically reviewed manuscript. LG: assisted with literature search, screening and review of papers for inclusion (and summarisation of papers), critically reviewed manuscript. APB: supervised KG, revised protocol, arbitrated regarding papers for inclusion, contributed substantially to manuscript and is the author responsible for the overall content as the guarantor.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests APB is in receipt of funding from the Great North Childrens Hospital Foundation Charity, NIHR ARC and Ways to Wellness as CI of a pilot delivering and evaluating social prescribing for children with neurodisability, initiated in a hospital setting. LG is funded through the ARC grant. KG has no competing interests to declare.

  • Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.