Social prescribing for children and young people with neurodisability and their families initiated in a hospital setting: a systematic review

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

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