Hospital in-reach family-centred social prescribing pilot for children with neurodisability: mixed methods evaluation with social return on investment analysis

doi:10.21203/rs.3.rs-4804256/v1

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Research Article

Hospital in-reach family-centred social prescribing pilot for children with neurodisability: mixed methods evaluation with social return on investment analysis

https://doi.org/10.21203/rs.3.rs-4804256/v1

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Background

Social prescribing (SP) link workers (LWs) support individuals to engage with community resources, co-creating achievable goals. Most schemes are community-based, targetting adults. Vulnerable populations including hospitalized children with neurodisability and their families, could also benefit from SP.

Aims

To pilot a hospital-initiated SP service for children with neurodisability and their families; to explore its feasibility, acceptability and undertake social return on investment (SROI) analysis.

Methods

Mixed-methods cohort study with SROI analysis. We recruited children aged < 16y with neurodisability, identified during inpatient stays, their parents/carers and siblings. Participants received LW support for 6 months, extending beyond hospital discharge. Pre- and post-intervention pilot data covered profile of needs (Support Star), quality of life (EQ5D/CHU-9D), wellbeing (WEMWBS/CORS) and financial strain. We undertook 22 qualitative observations of family/LW interactions and 39 in-depth interviews with families, LWs, and healthcare professionals (HCPs). Together these data were analysed within a SROI to establish the costs and social value generated.

Results

Of 48 families supported by the service, 25 were recruited to the evaluation (26 children, aged 10m-15y; 4 siblings; 36 parents). Baseline quality of life and wellbeing indices averaged below population norms. LWs were highly effective at supporting families (only 6/151 goals unmet). Unmet need decreased by 6 months (Support Star, p < 0.001).

Trial registration

ISRCTN 42100

Social prescribing

Neurodisability

Child

Hospital setting

Community setting

Link worker

Social prescribing involves “link workers” (LW) helping those with health and social needs to engage with supportive community resources, addressing social determinants of health ¹. Social prescribing (SP) is attracting interest globally ² and is endorsed by NHS England across the age spectrum within primary care settings as part of personalised care. Addressing unmet non-medical needs is postulated to improve clinical outcomes by reducing competing demands, thus freeing up time, money and energy, reducing stress and improving wellbeing. This could lead to reduced emergency appointments, improved adherence to medications and routine appointments, resulting in reduced healthcare costs ³.

SP interventions in adults have shown benefits to wellbeing and quality of life ⁴. SP schemes have led to cost savings in secondary care. Analysis from a large cohort of adults with multiple long-term conditions in the Ways to Wellness programme in Newcastle showed 27% lower secondary care costs compared with a matched group ⁵. Evidence of reduced use of primary care services is summarised in a recent report for the National Academy of Social Prescribing ⁶.

SP for children is under-investigated ⁷, underdeveloped ⁸, and underfunded ⁹, despite evidence of benefit ¹⁰. For example, the Charity Barnardos showed that their scheme for children and young people in Cumbria improved mental wellbeing and was cost effective ⁹. Most studies have focused on young people (children aged 14 and over) and young adults rather than younger children ¹¹, though a few community-based studies are exploring SP to support the mental health of children ¹². An NHS toolkit, accessed through the StreetGames website, has been developed for those intending to deliver SP for children and young people (CYP). Given the known association between poverty, family adversity and adverse child outcomes ¹³, SP initiatives for children and families have real potential for positive impact.

SP approaches are likely to be of benefit to children with neurodisability and their families ¹⁴. Children with neurodevelopmental impairments e.g., cerebral palsy (CP), epilepsy and autism, form the largest group of children with disability in the UK. Over half of families with a child with complex healthcare needs, such as those arising from neurodevelopmental impairments, have financial difficulties; nearly half express unmet non-medical service needs, and a third have difficulty accessing non-medical services ¹⁵. Parental financial constraints impact participation of their children ¹⁶. Access to medical services is also affected: non-attendance at outpatient appointments is more common in children with CP whose families are socio-economically disadvantaged ¹⁷. Parents of children with disabilities want support in finding services to support the individual needs of their child, siblings and the whole family ¹⁸. SP LW could help address this need. Finally, the health and psychosocial functioning of parents of children with neurodevelopmental disorders is adversely affected ¹⁹; this further indicates the need for a family-centred approach to support.

The current (UK) provision of LW within general practice settings may not be the best model for children and young people – over two thirds of young people would prefer to access mental health support without going through their GP²⁰. One way to identify and initiate non-medical support for some of the most severely affected children and families is during hospital inpatient stays: this could help reduce length of stay, reduce readmission rates, improve outcomes for patients and families, and allow specialist staff to redirect support to trained LW, improving work efficiency. This approach has not been adequately explored in hospital settings ²¹. USA inpatient screening identified that children with social risk factors had a higher 30-day readmission rate than those without; furthermore, children with medical complexity had an increased likelihood of a positive screen for social risk factors ²². Children’s hospitals provide a valuable setting to identify and address health inequalities, opportunistically and/or systematically ^23,22. Our prior consultation work with stakeholders including young people, parents of children with disability, healthcare providers and managers indicated a high level of interest in a hospital in-reach SP service for children with neurodisability.

Aim:

To pilot a hospital-initiated SP service for children with neurodisability and their families
To explore the feasibility and acceptability of the service and conduct a social return on investment (SROI) analysis of the associated costs and outcomes.

Design and setting

The study used a mixed methods design with SROI analysis to evaluate an innovative family-based SP LW pilot intervention in a children’s hospital in North-East England between August 2022 and February 2024. During this time, two part-time LWs (just under one full time equivalent), employed by an external organisation (Ways to Wellness, an innovation hub tackling health inequalities in the North East and North Cumbria), provided support to children with neurodisability and their families identified within the hospital. The pilot was called SPACE CYP (Social Prescribing And Community rEsources for Children and Young People), or the “SPACE Pilot”. During the setup phase, LWs were recruited, obtained honorary contracts with the Trust, undertook relevant training including hospital induction and mandatory training, and compiled a comprehensive database of local services relevant to the client group as well as setting up referral pathways. A secure data environment was set up for LW to store data regarding client contacts.

In line with MRC complex intervention guidance ²⁴, this service was an adaptation of an existing intervention (SP) to a new context (hospital in-reach, family-based service for a specific patient group). It included assessment of feasibility and acceptability of the intervention and evaluation design. A logic model was created and informed the pilot evaluation (Figure S1).

Participants, inclusion and exclusion criteria

We recruited children with neurodisability, their carers, and siblings. Eligible children were aged under 16 years, had complex chronic needs related to neurodisability, and were hospital inpatients at the Great North Children’s Hospital, Newcastle upon Tyne (admitted under any team) at the time of identification. Eligible children and families were resident in the North of Tyne/Gateshead region as it was felt that LWs would reasonably be able to maintain oversight of relevant facilities in this region. Children were excluded if they were too medically unwell for a SP intervention to be appropriate at the time; and if they did not meet the eligibility criteria. We considered whether participants were already involved in a research study to make sure that they would not be, or feel, overburdened by research commitments; and to ensure that taking part in more than one study would not interfere with any study findings. We also recruited LW and healthcare professionals (HCPs) working in the children’s hospital for their views and feedback on the service, aiming for a wide range of professions and varying levels of experience.

Ethical approval

was provided by NorthWest - Greater Manchester Central Research Ethics Committee (ref 22/NW/0110). Children and families not meeting criteria for entry to the study (and/or not providing informed consent) were still supported by the service. For example, where families did not live in the North of Tyne/Gateshead region, LW would meet with them, discuss their needs, and signpost to local resources.

Sample size

We aimed to recruit 30 children and families to the study, depending on caseload complexity. The sample size was chosen pragmatically, based on anticipated capacity of the service and numbers likely to meet inclusion criteria and participate.

Participant Identification and Recruitment

Potential participants were identified by ward staff who were part of the existing care team and provided with information about the service and research study, initially through a flyer. If interested, they were given an information sheet about the study and had the opportunity to have questions answered. Children could provide assent where appropriate in addition to obtaining parental consent. As support was provided to the family unit in addition to the primary participant, consent was sought for parents and carers for their own participation, as well as parental consent or written assent for any siblings of the primary participant as appropriate. Written informed consent was obtained prior to any study procedures taking place.

Intervention

During the intervention phase, LWs met with the child and family to establish individual profiles of need, working collaboratively with them to identify goals and ways to address these. LWs connected families with relevant community services where available, and provided them with personalised and facilitative support over a six-month period. During this time, they tailored support to the needs of the family, and reviewed progress, informally at 3 months and more formally at 6 months. There was no control group: all those recruited were offered link worker support for ethical reasons. We created a TIDIER ²⁵ checklist summarising the key features of the intervention (Table 1).

Table 1

Intervention summarised using TIDIER checklist.
Name	GNCH pilot
Why	Children with neurodisability and their families have high levels of unmet need. SP is a plausible solution to addressing this.
What materials	Support star (Triangle) used by LW to gather information about domains and levels of need, at baseline and follow up. This forms the basis of a conversation about unmet needs in a range of domains. Directory of community resources and services, curated by LWs
What procedures	Unmet needs mapped; participants referred to services/community resources to address these needs and supported to attend where needed
Who provided	Link workers – with relevant life experience, personal qualities and values to undertake the work. Appropriate training undertaken on social prescribing and supplemented with courses to fill in gaps in experience as well as hospital mandatory training. Shadowing with hospital team. Supervision and line management. Employed by external organisation with honorary contracts with the Hospital Trust.
How provided	Individual, face to face session at baseline. Ongoing follow up by face to face/telephone/virtual means, with face-to-face reviews at 3 and 6 months.
Where	Children identified during inpatient hospital stay. Baseline assessments in hospital or in the community post discharge e.g., patient’s home Engagement with LW (up to 6m) and community services within the North of Tyne and Gateshead ICP (indefinite) continues after discharge from hospital.
When and how much	Intervention tailored to need within the 6-month period
Tailoring	Personalised intervention, adapted to address unmet need
Modifications	If recruitment through inpatients slow, extend to outpatients.
How well (adherence)	Documentation of LW contact, goals set, goals met and how: in-depth interviews with families at the end of the intervention.

Data collection/Assessments

Data were collected to assess feasibility outcomes with the intention that at least 30 children and families took up the offer of the scheme and that at least 2/3 of families engaged with and reported benefits from the service. We collected qualitative data for feedback regarding acceptability of the scheme to families, referrers and LWs. We also piloted assessments of wellbeing and quality of life as detailed below.

Process data to understand pathways and throughput.

Baseline data collection including demographics and contact details for families were collected as part of standard care for LW interventions. We collected data on the number of referrals, uptake, numbers declining, deemed inappropriate/ineligible or discontinuing engagement; demographics; goals (including whether they were met and if so, how), and the nature of the work undertaken by LW.

Qualitative data to understand features of an optimal service.

In-depth interviews were undertaken with families (parents and children including recruited siblings where possible) to explore their experiences of the service. Interviews were offered to all participants at 3 and 6 months and were undertaken face to face or remotely according to participant preference. A topic guide was developed to guide but not restrict the flow of discussion (Supplemental data S2). Broadly, the first interview aimed to understand the context of the child and family; their experiences of meeting the LW and of the support offered; and any suggested changes to the service. The second interview continued with these themes but also explored what had changed due to the intervention as well as thoughts around closure/discharge from the service. Interviews were supplemented by qualitative observations of interactions between the LW and families, and of situations in which children and families were engaging with community services to which they had been referred, as well as interviews with LW and HCPs working in the children’s hospital for their feedback and views on the service.

Quantitative pre- and post-intervention data.

Pre and post intervention data were collected to pilot assessments covering the following domains: profile of needs; quality of life and wellbeing, and specific data relevant to the population under study including financial strain.

Profile of needs

The Support Star (Triangle Consulting Social Enterprise Limited) was used by the LWs as a tool to start conversations with the family about how they were managing. The Support Star assesses seven domains of functioning (physical health, study and work, “doing what matters to you”, money, friends and relationships, home and family, and emotional wellbeing). Scores of 1–5 respectively represent “not being able to respond”, “taking it in”, “trying to respond”, “finding a way through” and “managing well”. The Support Star was designed for use with young people facing serious illness and was chosen as it is responsive to change even for service users whose health condition may be deteriorating (https://www.outcomesstar.org.uk/wp-content/uploads/OS-Psychometric-Factsheet-Support-Star-Young-People.pdf). The young person’s version of the Star was used. In practice, LWs used the Star as a tool to capture how the family was managing overall with respect to each domain. However, if there were two affected children with neurodisability in one family who were in the study, a separate Support Star was used for each child, so that the focus on needs and goals in relation to each child was clear. The rationale for each score in each domain was documented. The score helped LWs to understand the priorities of the family and to support them in setting personalised goals around areas of unmet need. After 6 months of support, LWs categorized whether these goals were fully met, partially met, unmet or no longer relevant.

Quality of life

Generic quality of life (QoL) measures were piloted to estimate both child and parental changes in QoL outcomes. The CHU9D ^26,27 is a generic preference-based measure of health-related quality of life (HRQoL) designed for children and young people aged 7–17 years though a proxy version can be used for younger children. There are 9 items, each with 5 response levels (1 being the best outcome for each level) based on a recall period of one day. Individual scores were weighted using the UK Adult Tariff ²⁷ to give a HRQoL score between 0.33 and 1. Normative scores for Australian adolescents (n = 500) ²⁸ show a mean HRQoL of 0.930 (std 0.083) for males and 0.932 (std 0.085) for females.

The EQ5D-5L ²⁹ was used to capture parental HRQoL. The EQ5D-5L has five items, each with 5 response levels, where 1 is the best outcome response for each level. Scores were weighted using a tariff to give a number between 0 and 1. The visual analogue scale (VAS) score was also obtained to indicate parental self-reported health on the day of assessment on a scale from 0-100. Normative English general population data by age were published in 2023 ³⁰.

Wellbeing

The Outcomes Rating Scale (ORS) (https://www.corc.uk.net/outcome-experience-measures/outcome-rating-scale-ors-child-outcome-rating-scale-cors/) was piloted as a tool to assess wellbeing in children. This is a linear visual analogue scale used with four items (“me, family, school, everything”), with a simplified child- friendly version initially designed for those age 6–12 years (CORS) but valid up to age 15 years ³¹. For children aged 5 years and under the YCORS can be used to allow a self-report choice amongst 4 facial expressions from sad to happy. There is a maximum total score of 40 (best outcome). Scores below 28 are of concern. Community-based normative data in children aged 10–15 years showed a mean score of 31.4 (std 7.69) ³¹.

The Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS) was used to assess parental mental wellbeing ³². This has 14 items each with 5 response levels where 5 is the best outcome response for each level. The mean score in the English population was 51 with standard deviation of 7 ³².

Three questions were put to parents as a gauge of financial strain, taken from https://www.nlsinfo.org/content/cohorts/nlsy79-children/topical-guide/income/financial-strain.

These related to how often the household put off buying something they need because they don’t have enough money (5-point scale); difficulty paying bills in the last 12 months (5-point scale); and financial situation at the end of each month (e.g., “just enough to make ends meet”: 4-point scale).

Data analysis

Descriptive statistics were used to summarise quantitative data. Interviews and observations were recorded verbatim, transcribed and anonymised for analysis. Observation and informal debriefs involved the production of anonymised field notes. All qualitative analyses were conducted according to standard rigorous procedures. We used procedures from first-generation grounded theory (coding, constant comparison, memoing), from analytic induction (deviant case analysis) and constructionist grounded theory (mapping). We undertook independent coding and cross-checking, and a proportion of data was analysed collectively in data clinics with the core research team where people shared and exchanged interpretations of key emerging issues ³³.

Reflexivity: Interviews with families and LW were undertaken by LG, a research assistant with a degree in psychology, Masters in cognitive neuroscience, and prior interviewing experience. Interviews with HCPs were undertaken by SD as part of a Psychology Masters in Research degree: training and supervision were provided. To increase credibility and support data exploration, both LG and MH (psychology undergraduate student who undertook a short course in qualitative methodology prior to commencing the work) coded transcripts, compared codes, and agreed on themes, with supervision from AB (CI; consultant paediatric neurologist and clinical senior lecturer with experience of qualitative methodology) and TR (professor with expertise in qualitative research methodology). Sense checking of findings was also undertaken through discussion with LW during team meetings and in follow up interviews with parents.

SROI Analysis

SROI analysis followed six key stages: establishing scope & identifying key stakeholders, mapping outcomes, evidencing outcomes & assigning value, establishing impact, calculating SROI and reporting, using & embedding ³⁴.

Establishing scope and identifying key stakeholders

Stakeholders included the SPACE CYP participants (children with neurodisability), their parents & siblings with unmet non-medical needs and NHS England, as identified using inclusion and exclusion criteria detailed earlier. LWs delivering the intervention and HCPs involved in care of the families were also included.

Mapping outcomes

Data from qualitative interviews with stakeholders were used to refine and shape the theory of change outlined in Figure S1, which demonstrates the relationship between inputs, activities, outputs, outcomes and impacts.

Evidencing outcomes and assigning value

Data on outcomes were obtained via questionnaires from participants using the measures outlined above including Support Star, CHU-9D, EQ5D-5L, CORS, WEMWBS, and financial strain. Data were collected at baseline and follow-up at 6 months. Detailed outcome data were obtained from the 19 children (18 families) recruited to the study over a 14-month period between 9th August 2022 and 10th October 2023 and who completed follow up. Baseline and follow-up questionnaires were compared to identify changes in levels of unmet non-medical needs and number of goals met, children’s quality of life & mental wellbeing, parent’s quality of life & mental wellbeing and financial strain.

Outcomes that resulted in direct financial gains or losses (such as annualized increases in benefits) could be valued directly. Social outcomes without market values were assigned values indirectly using the Housing Associations’ Charitable Trust (HACT) Social Value Calculator version 4 ³⁵ which uses established wellbeing valuation methods to assign monetary values to social outcomes ³⁶. Inputs were valued in terms of the total cost of running the SPACE CYP intervention for one year (for the full service which supported 49 families). This included: staffing costs, equipment costs, project marketing, licensing and software.

Establishing impact (Attribution, Deadweight & Displacement)

To avoid over-claiming the benefits, we accounted for attribution, deadweight and displacement. Deadweight is the proportion of outcomes that primary stakeholders would have experienced, regardless of engaging with the SPACE CYP project. Displacement refers to the proportion of activities that participants had to give up to engage with the SPACE CYP project, which may have contributed towards their wellbeing. Attribution acknowledges the proportion of outcomes that could be attributable to factors other than the SPACE CYP project. Displacement and attribution were calculated retrospectively, using data from qualitative interviews. To calculate attribution, qualitative interviews with families were screened to establish whether families were supported by other professionals/services prior to LW support. To calculate displacement, interviews were screened and key terms such as ‘Give Up’, ‘Stop’ and ‘discontinue’ were utilised. To avoid over-claiming standard deadweight, reductions were taken from the HACT Mental Health and Social Value Calculator. To calculate deadweight for financial outcomes, ranges were taken from five SP studies which included SROI analysis ^37–41. Quality assessments were undertaken on these studies following a quality framework tool ⁴².

SPACE CYP Pilot service

63 children from 62 families were referred into the service over a 14-month period between 9th August 2022 and 10th October 2023. Three families were excluded because the child referred did not have a neurodisability; two families could not be supported because of language barriers and challenges accessing a translator. Thirteen families lived outside of the pilot service area and were signposted to local support. The remaining 48 families were offered support for 6 months in the first instance. This represented 49 children with neurodisability (mean age 7y3m, range 5m to 15y; 33 male) 9 siblings, and 65 parents (123 clients in total). 45 families spoke English as their first language and three had a different first language (French, Arabic and Javanese).

For 22 families the referrer was a nurse and for 21 cases a consultant. The other 5 referrals were from a physiotherapist (n = 3), an occupational therapist (n = 1), and staff from the Bridges hospital in-reach school (n = 1).

Pilot study patient flow

25 of the referred families (26 children with neurodisability, mean age 6y10m, range 5m to 15y, 17 male, 36 parents and 4 siblings) were recruited to the pilot evaluation. The proportion of children with neurodisability from ethnic minority groups (5/26) was representative at both a local (North-East England) and National level when compared to 2021 ONS Census data. 5/25 families had postcodes in the most deprived Index of Multiple Deprivation national decile.

Three families withdrew from the study prior to the baseline data collection. One was due to death of the child, one family felt the study was too much to take on at the time, and one was lost to follow-up before baseline data was collected. At baseline, data was collected from 22 families, including 23 children with neurodisabilities and 26 parents.

Each family received at least six months of LW support between baseline and end-line. In this time, four further families withdrew from the study. One was due to death of the child, and three were lost to follow-up prior to final data collection. Final data was collected from 18 families (19 children with neurodisabilities and 20 parents): this met our feasibility criterion regarding evidence of engagement of at least 2/3 of families recruited.

Figure 1: Flow of children with neurodisabilities through the service and pilot evaluation. Note that parents and siblings were also supported: details are in the manuscript text.

Table 2

Child and family participants recruited to research study (pseudonyms)
Child (gender; age at start)	Recruited Parents	Recruited Sibling	3m Interview	6m Interview
Ashley (F, 4y)	Chloe, Barry		Yes (Chloe)	Yes (Chloe)
Amina (F, 1y)*	Blessing, Umar		No	No
Iris (F, 10m)*	Karen, John		Yes (Karen & John)	Yes (Karen & John)
Lewis (M, 6m)*	Mandy, Nigel		Yes (Mandy)	Yes (Mandy)
Olivia (F, 11y)	Paula		No	No
Ryan (M, 15y)	Sarah		Yes (Sarah)	Yes (Sarah)
Toby (M, 8y)	Andrea		No	No
Vince (M, 6m)*	Wendy, Xavier		Yes (Wendy)	Yes (Wendy)
Jackson (M, 13y)	Angela		Yes (Angela)	No
Bobby (M, 10m) *	Christina		No	No
Doug (M, 3y 10m)	Ellie		No	No
Fergus (M, 1y)*	Georgia, Harry		No	No
Ahmad (M, 8y)	Umi	Lina (F, 6y)	Yes (Umi)	Yes (Umi)
Luke (M, 6y)	Melissa, Nick	Mason (M, 9y)	Yes (Melissa & Nick)	Yes (Melissa & Nick)
Parker (M, 1y)*	Robert		No	No
Sadie (F, 7y)	Tanya		No	No
Vaughan (M, 6y) *	Whitney		Yes (Whitney)	Yes (Whitney)
Yasmin (F, 14y)*	Zara		No	No
Fiona (F, 1y) *	Harriet, Mark	Leo (M, 1y)	Yes (Harriet)	Yes (Harriet)
Charlie (M, 4y)	Rachel	Josh (M, 7y)	Yes (Rachel)	Yes (Rachel)
Billy (M, 13y)	Esme, Reggie		Yes (Esme)	No
Ollie (M, 9y)	Alice		No	No
Amara (F, 2y)	Ola, Ibrahim		Yes (Ibrahim)	Yes (Ibrahim)
Molly (F, 13y) Alfie (M, 13y)	Rose, Myles		Yes (Rose & Myles)	No
Samuel (M, 14y)	Phoebe		Yes (Phoebe)	Yes (Phoebe)

Asterisks indicate families with children with new neurological presentations or children age < 2y (emerging neurological presentations)

Staff participants: Table 3 summarises the 11 staff participants recruited to the study. Participants from the following backgrounds were interviewed: paediatric consultants (general/diabetes; neurology; rheumatology), children’s physiotherapy and occupational therapy, children’s nursing (1 community and 2 hospital-based), a hospital in-reach LW, a teacher and a paediatric neurology trainee.

Table 3

Staff recruited to the study for interviews
Participant Pseudonym	Gender	Occupation	Time in role
Audrey	Female	Children’s physiotherapist	8 years
Brad	Male	Consultant in general paediatrics and paediatric diabetes	9 years
Daphne	Female	Consultant in paediatric neurology
Eliza	Female	Children’s community nurse	18 years
Frida	Female	Children’s nurse & coordinates discharge	20 years & 7 months for coordinating discharge
Gloria	Female	Consultant in paediatric rheumatology
Kaitlin	Female	Occupational therapist specialising in cerebral palsy
Lionel	Male	Senior registrar in paediatric neurology	10 years
Melissa	Female	Teacher on children’s wards
Miley	Female	Nurse in charge of paediatric neurology wards
Gemma	Female	Hospital based Link worker	9 years of link work experience

Baseline assessments

Index cases in the study were significantly impacted by their neurological condition. 22/26 index children had feeding difficulties. Only 3/26 could walk independently, though 8/26 were aged < 2y. Young age and/or significant communication difficulties necessitated proxy reporting for almost all assessments undertaken.

At baseline, CHUD data were completed for 22 children. Mean weighted proxy score was 0.725 (s.d. 0.129), with population normative mean 0.89. Mean weighted EQ5D-5L score for parents at baseline (n = 27/36) was 0.82 (s.d. 0.14), lower than population norms (mean 0.905); mean VAS score was 68.7 (s.d. 17.9).

CORS could only be completed in 16 children at baseline. At baseline, 7 (43.8%) of CORS scores were below the cutoff for concern (28), and the mean CORS score was 27.9 (s.d. 5.46). Mean WEMWBS score (26 parents) was 42.7 (s.d. 9.58), versus a UK population norm of 51.6. At baseline, 7 parents had a WEMWBS score of 41–44 (possible or mild depression range) and 9 parents scored < 41 (probable clinical depression).

Regarding financial strain, only 3 families reported never having to put off buying essential items due to lack of money over the previous 12 months. Only 5 families reported never having difficulty paying bills. 5 families reported having some money left over at the end of the month (only one of these scored as “more than enough money left over”).

Median Support Star scores at baseline in relation to 23 children (22 families) were 3/5 for physical health, work and school, “doing what matters to you”, money, and emotional wellbeing, and 3.5/5 for friends/relationships and home/family.

Thus, the assessments piloted were all workable except that the item relating to school in the CORS was problematic given the young age of most participants. The YCORS for younger children does not map neatly to the CORS, so could not be used as an alternative.

Goals identified at baseline and goals met.

LWs identified 151 goals amongst 23 families in the pilot evaluation. Table 4 shows

the number of goals sorted by domain and primary beneficiary (child/parent/sibling/whole family). Table 5 gives examples of goals, presented in the same format. Of the 151 goals set at baseline 110 were completed, 24 partially completed, and 11 were no longer relevant. Only six goals were not met – three were for additional financial support which was not available (for specialist equipment, childcare costs and general support); three were around parental needs (physical, emotional) but the parent was unable to engage with these due to the child’s medical needs.

Table 4

Numbers of baseline goals by domain and primary intended beneficiary
Domain	Child (proxy)	Parent	Sibling	Whole family	Total
Physical health	5	2	0	1	8
“Doing what matters to you”	22	5	3	14	44
Money	2	1	0	17	20
Home/family	7	4	0	14	25
Friends/relationships	0	12	1	0	13
Emotional wellbeing	0	24	4	2	30
Study and work	1	8	1	1	11
Total	37	56	9	49	151

Table 5

Examples of baseline goals by domain and primary intended beneficiary
Domain	Child (proxy)	Parent	Sibling	Whole family
Physical health	Conductive Education Wheelchair sports Sensory support	Exercise Advocacy in raising concerns re factors affecting child’s physical health		Accessible play parks
Study and Work		Advocacy re absence from uni Employment advice (ACAS)/ Business advice/ Carers rights at work/Back to work courses	Advocacy re regarding mitigating circumstances for sibling	Nursery funding application
“Doing what matters to you”	Accessible activities (outdoor activities/holiday clubs/swimming/ horse-riding/ cycling/ wheelchair activities	Driving/motability courses Parent wellbeing activity; Recovery College; “Disability expo”	Sibling activities e.g. play group ADHD youth club	Blue badge/Radar key/ Buggy & Wheelchair transport Holiday activities/ Accessible days out
Money	Eyegaze technology funding Activities/clubs where personal assistant goes free	Childcare costs		Food bank, MAX card, DLA/Carers Allowance/ Direct payments advice/ Finance review Advocacy e.g., support to apply for funding; energy bill dispute
Emotional wellbeing	Safe sensory chew toy		Pre-bereavement support; Young carers	Pre-bereavement support; Emotional support during PICU
Friends/ relationships		Online/Face to face peer support including specific groups e.g. ADHD Making friends	Sibling peer support	Peer support for home TPN Meeting other families with children with CP
Home/family	New bed/suitability of environment for child with disability Obtaining disability social worker	Visa advice Respite care		Accessible family holiday; Housing/garden repairs/items Advocacy in obtaining house assessment report

End of study assessments

Support Star data were available in relation to 19 children from 18 families at the final time point; these scores were compared with the same children at baseline. There was a mean increase in total scores of 3.94 points (median increase 4 points), with the domains “doing what matters to you”, “home and family” and “emotional wellbeing” showing the greatest increases and “friends and relationships” showing the least change. Figure 2 gives an overview of the changes by domain. Wilcoxon signed rank analysis (2-tailed) demonstrated a significant change in total scores from baseline to 6 months (z = 3.34, p < 0.001). Support Star scores improved for 15 of 19 children, showed no change for 3 children and decreased for one child. Review of these four cases provided an explanation: all four of the children had a significant deterioration in physical health over this time and one subsequently died.

In contrast, quality of life and parental wellbeing measures EQ5D-L5 (including domains), CHU9-D (including domains), and WEMWBS did not change significantly over the 6-month period (though 6/19 parents showed a meaningful improvement in scores of at least 3 points on the scale). The mean reported level of financial strain also did not change significantly over the 6-month period (Table 6). CORS did show statistically significant improvement but was only applicable to 13 children; in three of these the change was 5 points or more (reliable) and in two it was also considered clinically significant (i.e., it also crossed the clinical cutoff). Thus, the Support Star was the most sensitive indicator of change in outcomes in the pilot study, capturing changes in outcomes in domains related to goals set.

Table 6

Baseline versus endline data for quantitative assessments
Domain	Assessment	Number with baseline and endline data	Mean at baseline (s.d.)	Mean at endline (s.d.)	Mean difference (s.d.)	Test statistic and p (2 tailed)
Unmet need	Support Star (high score is better)	19	21.8 (4.11)	25.8 (4.39)	3.95 (3.73)	z = 3.34 p < 0.001*
Quality of Life, Child	CHU9D total (low score is better)	18	21.9 (5.59)	19.9 (7.93)	-2.00 (9.05)	z = -0.996 p = 0.319
	CHU9D utility (high score is better)	18	0.717 (0.126)	0.767 (0.147)	0.05 (0.159)	t = 1.34 p = 0.199
Quality of Life, Parent	EQ-5D-5L index (high score is better)	19	0.800 (0.159)	0.817 (0.121)	0.0163 (0.128)	t = 0.540 p = 0.597
	EQ-5D-5L VAS (high score is better)	19	68.7 (19.0)	69.0 (16.5)	0.263 (22.1)	t = 0.052 p = 0.959
Feedback on progress, Child	CORS (high score is better)	13	28.1 (5.39)	31.5 (4.57)	3.33 (4.16)	z = 2.90 p = 0.004*
Wellbeing, Parent	WEMWBS (high score is better)	19	42.5 (9.55)	44.3 (9.39)	2.00 (9.79)	t = 0.891 p = 0.385
Financial strain	Financial strain (low score is better)	18	7.83 (2.07)	7.50 (1.98)	-0.33 (1.64)	z = − 0.644 p = 0.519

Results for participants with data at baseline and endline.

Qualitative analysis

Context of the child and family preceding LW support

Inpatient stays were often in the context of new significant neurological events, either as an initial presentation or an exacerbation or deterioration of a known condition.

… he’s gone from being really active, running around, to not being able to hold his weight or walk or stay upright. He deteriorated with his mobility pretty quickly after being diagnosed. So, it was really scary to watch.

(Whitney, IV-F9, 32)

In addition to the stress and anxiety caused by illness in their child, prolonged hospital inpatient stays caused significant disruption to family life and reduced access to routine community engagement and support.

You have a whole different community being a hospital mam… … being stuck in the hospital I missed that whole part of having a baby, coming home …, and you meet other mums at baby groups, and you learn about things going on.

(Harriett, IV-F13, 15)

The transition from hospital to home after such an admission was described as overwhelming. Parents who had faced this transition on their own in the past reflected that in-reach LW support would have been valuable. HCPs concurred, and felt that LW could facilitate hospital discharge, helping families to “find ways of adjusting and going forwards at home” (Kaitlin, IV-H07, 87). Some parents reflected on memories of the early days and months after their child had first been discharged some years previously. In addition to fears about medical management and everyday care of their child, they described having felt lost when trying to adjust to new ways of life. They felt there had been no clear path to finding the support they needed. They had to tackle changing housing needs, juggle caregiving commitments with work and/or apply for welfare support, and source specialist equipment and practical tools. The complexity of their child’s medical needs created significant barriers when trying to access support, including difficulties when leaving the house, limited childcare opportunities and finding services to accommodate their unique needs. Parent carers who left their previous job due to their child’s health reported that their mental loads were significantly increased by their caring responsibilities.

Families also reported having experienced gaps in service provision. Some (e.g., those with young children) did not meet eligibility criteria for a disability social worker; others were reluctant to accept support from statutory services, perceiving the potential for stigma. Early Help support required re-referral whenever new issues emerged. Overall, services were not always felt to be accessible or to address their needs.

Parents prioritised their children’s needs but neglected their own wellbeing. They worried about the impact on siblings.

…And I think there was a little bit of guilt for feeling frustrated by the fact that [sibling] does miss things when Luke’s ill and there is more responsibility on him than a normal 10-year-old.

(Melissa, IV-F24, 253)

The impact on siblings included emotional wellbeing challenges due to their circumstances and the requirement of parents to focus their time and energy on looking after their child with neurodisability.

B) Experiences of meeting LW and support offered

Many families reported having no prior knowledge of LW services and didn’t initially understand the role, despite receiving information leaflets and explanations from referrers.

… it was really quite vague in the hospital …, a lot of the nurses and stuff were saying it was a social worker, and then it was like, “it’s not a social worker, it’s duh-duh-duh,” and I was like, “that’s a bit confusing.”… I think it might have been Gemma [LW] when she came then discussed that “we want to see if the support you have already, if there’s any gaps that need filling.”., because there’s so many different needs with a neurodisability, what support, like, a family would need other than what they get from the NHS. I think that was what was explained and I only understood that when Gemma came.

(Mandy, IV-F1, 212)

This lack of understanding led to some initial trepidation, though parents reported being prepared to “give it a go”. Their fears were generally allayed after meeting the LWs, as they realised that valuable support was being offered. This comprehension was facilitated by proactive suggestions of services and resources by the LWs, tailored to the family’s own circumstances.

I was worried at first. When the nurses came into hospital and said there was this project and you wanted to come and see us, I thought, “Oh, God.” (Laughter) I have never been a one for joining groups and things … So, I thought, “Oh, no. What is this going to be?” And then, once I started chatting to you, I realised that “Actually, this is something that is missing.” (Angela, IV-F4, 65)

LW in-reach into the hospital created opportunities for face-to-face meetings with families. This helped build familiarity and trust, and reduced the social isolation felt because of prolonged periods spent in isolated cubicles with otherwise predominantly medically focused contacts.

The co-location of link workers at the hospital also allowed for greater collaborative work with HCPs that families liaised most closely with. HCPs reported encountering a range of unmet non-medical needs of CYP and their families including issues related to isolation, inclusivity and accessibility, undiagnosed neurodivergence, self-management of their condition, mental health, socioeconomic factors and lack of awareness of existing services. HCPs encountered challenges in signposting families to services due to their own lack of awareness of appropriate services, lack of time and biases inherent in their role. The LW role was perceived as identifying and addressing a range of psychosocial factors, for example:

… it would take the pressure off. Particularly nurses, therapists in our service, because they are often the first port of call for families. Families will tell them things that make them feel very sad and they don’t know where to send that family. Sometimes an awful lot of a Band 7 nurse, physio’s time is taken up trying to find where and how to help this family … I just think we are not doing any of this very effectively. If you had a person whose job it was to understand these services outside of the hospital, they would do it more effectively. It would take less time, it would cost less money, and it would work better for families. (Gloria, IV-H06, 234)

LW support was seen by HCPs as contributing to more family centred care, resulting in reduced caregiver burden, improved health outcomes for CYP and reduced pressures on healthcare systems. Financial and operational challenges in setting up a new service were acknowledged.

Parents described feeling burnt out and overwhelmed, with no “headspace” to think about and pursue goals, made worse by limited awareness of the types of support that they could be accessing. Some parents struggled initially with the concept of receiving help as they felt they had a responsibility to meet their child’s needs on their own. Parents often needed “permission” to find ways to include self-care as well as caring for their children. Initial scepticism about what could realistically be delivered was replaced by positivity after experiencing the service:

… the thought that somebody was going to come and say, “Here is another thing that you have got to find the energy to do,” but actually it wasn’t like that. You were coming to me with things and saying that, “We have found this for you. Is this something you would like to do? Will this be any use?” All that was taken away and it was really lovely. I have found everybody we have spoken to has been really empathetic.

(Angela, IV-F4, 67)

The nature of support varied as needed. Some families benefitted from ‘enhanced signposting’, noting that LWs provided tailored information not collated on websites. Some received help with completing referral forms for access to services. Some parents needed a LW to go with them to attend a community group for the first time.

A lot of the time, I will go, I will support people to attend for the first time because I think it’s a huge positive in getting over the first hurdle. I think, with a lot of people, signposting is not enough. You have to do, what I call, signposting plus. So, like signposting plus the added extra of the support … So, we will support people to attend places, to build confidence and break down barriers.

(Gemma, LW, IV-L06, 116)

Some services had specific eligibility criteria which inadvertently excluded certain groups from applying despite having capacity to expand. LWs directly brokered expansion of eligibility criteria of several services for client benefit. They did so by leveraging an in-depth knowledge of families and community services to problem-solve and advocate for solutions from their place of relative impartiality.

LWs were viewed by parents as trusted, empathetic, impartial, non-judgmental, and intuitive. For example:

Because there are times when these things happen where you just don’t know where to turn. And it is good to have somebody who is there who is able to have the time and resources to be able to try and think where you need to turn, to give you that little bit of information and advice. Because it’s so lacking, it really is… I think it’s a very, very valuable service.

(Sarah, IV-F12, 392–394)

LWs were felt to have very good knowledge and understanding of the types of challenges parents might face, and of available and relevant community support. They were flexible, approachable, proactive and resolute in matching services to need. Due to the level of specialization required for this patient population, mainstream and inclusive services were often insufficient for families’ needs but LWs secured opportunities that families had never thought possible.

C) What changed for the families due to the intervention

In addition to achievement of goals (Tables 4 and 5), parents felt listened to, supported and motivated to tackle challenges that had previously defeated them, such as reapplying for support which had initially been refused; or daring to attend a new group with their child.

I spoke to Helen [the LW] yesterday and I told her about the play group and she’s like, “do you want me to give you a pep talk on Thursday morning?” I’m like, “yes please, because I will cancel.” She’s like, “no, you’re going. I can tell you really want to go, so you’re going. I’m gonna ring you and give you that pep,” I’m like, “okay.”

(Wendy, IV-F5, 127)

They valued the delight in their children when they could access new community activities and were keen to share information about sources of support with others facing similar difficulties, e.g., through peer groups. Over time they felt more connected to their communities, and less socially isolated, with increased belief in their self-efficacy to sort problems out in the future.

… at least I’ve got those pathways now, haven’t I? And I know if maybe that group doesn’t exist anymore, I might be able to find another one that’s similar to it because I know who’s on it and I’ve got an email address, you know what I mean? That sort of thing.

(Sarah, IV-F12, 408)

Some families felt ready for discharge at 6 months; others felt relieved that they could still access help if new problems arose; some needed ongoing help.

D) Suggestions for the service

Parents and professionals knew of other families in similar situations who would benefit from similar support and felt that the eligibility criteria should be broadened. It was felt that overall this type of support was missing for children with long term conditions and their families, and would be invaluable. The evaluation challenge of capturing meaningful improvements in the context of fluctuating health issues of the child, was recognised.

I think the last time we saw [LW], we were struggling a lot. Things were really, really bad. And she’d asked us to redo the circle of where you are…And I was quite upset that that makes it look bad like she isn’t doing what she’s supposed to be doing. But it wasn’t that. It was just life.

(Melissa, IV-F24, 459–460)

It was acknowledged that 6 months was a relatively short period of time for provision of LW support given the enormity of challenges faced by some children and families, so flexibility regarding the duration of input as well as the nature of input was proposed.

SROI Analysis

Costs for delivering the social prescribing intervention over 12 months were estimated to total £74,736 or £1525 per family supported by the service. These are presented in Table 7. Direct financial outcomes are presentenced in Table 8. Many of the goals set by LW and participants resulted in direct financial outputs. Some of these were beneficial to families and resulted in financial gains whilst a few led to financial losses.

Wellbeing outcomes were valued using the HACT Mental Health Social Value Calculator. Wellbeing data collected through the WEMWBS was mapped on the SWEMWEBS and the Mental Health Social Value Bank was used to value changes in participant scores. A standard reduction of 27% was applied to account for deadweight as recommended by HACT (https://hact.org.uk/publications/valuing-improvements-in-mental-health/). Total social value was calculated for each adult participant (Table 9). All other outcomes were valued using the HACT Social Value Bank.

Table 7

Total annual costs per family for SPACE CYP
Cost Category	Annual Cost £	Annual Cost per Family supported (n = 49) (£)
Staffing (2* part time LW)	51558	1052.20
Training	3000	61.22
Travel	9791	199.82
Equipment Computers • total • annual* Wellbeing Star License MIS information (fixed) • total • annual** MIS license (variable) • monthly • annual	(9437) 1887 1560 (11400) 1140 (150) 1800	- 38.52 31.84 - 23.26 - 36.72
Marketing	4000	81.63
Total Cost	74736	1525.21

*assuming computing equipment will depreciate after 5 years

**MIS license is for 10 years

Table 8

Direct financial outcomes per family (by child)
Study ID	Goal	Financial Gain (£)	Financial Loss (£)	Deadweight (%)	Net Value (£)
C10001	Swimming	X	336	25	-252
C10001	New Bed	258	X	25	194
C10001	DLA	5,644*¹	X	25	4,233
C10004	Baby items	90	X	25	68
C10004	Bedroom environment	72.97	X	25	55
C10009	Activity centre	X	56	25	-42
C10009	Family Holiday	745	X	25	559
C10009	Paediatric first aid course	209	X	25	157
C10009	Counselling	450*²	X	25	338
C10012	Counselling	450*²	X	25	338
C10012	DLA	3,783*¹	X	25	2,837
C10012	Employment advice & carers allowance	4,258*³	X	25	3,194
C10017	Blue Badge	X	10	25	-8
C10017	Radar Key	X	5.49	25	-4
C10017	Family holiday	1027	X	25	770
C10020	Dehumidifier	139.97	X	25	105
C10020	Finance review	6000	X	25	4,500
C10033	Advocacy for housing	1500	X	25	1,125
C10033	Rain cover & hood	209	X	25	157
C10033	Activity centre & transport	55.40	X	25	42
C10050	Activity centre	20	36	25	15 -27
C10050	Carers allowance	4,258*³	X	25	3,194
C10065	New Bed	392.50	X	25	294
				Total Value	£21,842

¹ Middle and higher rates taken from: https://www.gov.uk/dla-disability-living-allowance-benefit/DLA-rates

² Counselling costs taken from: https://leosneonatal.org/

³ Carers allowance rate taken from: https://www.gov.uk/carers-allowance

Table 9

Mental Health Social Value Calculator
Study ID	Baseline Score	Follow-up Score	Value Change £	Value – 27% Deadweight £
P10003	25	29	1,255	916
P10011	28	26	-652	-476
P10013	15	18	2,616	1,910
P10018	14	31	25,856	18,875
P10025	20	21	3,488	2,546
P10021	21	22	0	0
P10031	14	15	9,369	6,839
P10034	26	27	652	476
P10037	20	18	-5,306	-3,873
P10041	25	26	0	0
P10045	19	24	5,383	3,930
P10051	26	26	0	0
P10057	24	27	1,933	1,411
P10061	26	28	652	476
P10063	25	23	-1,281	-935
P10067	30	26	-1,255	-916
P10069	20	22	3,488	2,546
P10070	22	21	0	0
P10064	18	18	0	0
			Total Social Value	£33,725
			Total Social Value per Family	£1,775

We measured 13 outcomes from the Social Value Bank, evidenced using the goals data (from Support Star) and data from the qualitative interviews. For example, one parent set a goal to take up regular volunteering: this goal was completed and evidenced in their interview transcript, resulting in an outcome of ‘Regular Volunteering’. ‘Financial comfort’ was evidenced via the financial strain questionnaire and mapped directly on to the HACT outcomes and values. For all outcomes, participant scores were averaged, and boundary scores calculated, to assess whether the participant’s change was significant enough to be included. Deadweight was taken directly from the HACT Social Value Bank. Attribution and displacement were estimated from qualitative data (as presented in the methods above). We estimated attribution at 18%, suggesting that 18% of any change could be due to other support besides LW support delivered through this intervention. Displacement was estimated at 0%, because SPACE CYP did not appear to displace any other activities. Table 10 illustrates the number of people experiencing changes for each outcome, and the resulting social value, when deadweight and attribution were considered.

The estimated total value, combining values from the direct financial, wellbeing, and social outcomes, attributable to the SPACE CYP project in one year is presented in Table 11, at £205,861.

Table 10

Social value generated by stakeholder group.
Stake-holder	Outcome	Financial Proxy £	Number experiencing the outcome	Deadweight %	Attribution %	Net social value £
SPACE CYP Participants	Able to obtain advice locally	2,773	18	9	18	37, 245
	Private outdoor space	3,052	2	0	18	5,005
	Afford to keep house well-decorated	13,984	2	22	18	17,888
	Financial comfort	17,118	6	31	18	58,112
	Goes to youth clubs	720	10	12	18	5,195
	Member of a social group	1,734	10	1	18	14,076
	Frequent moderate exercise	3, 662	8	12	18	21,139
	Secure job	10,569	1	34	18	5,719
	Frequently walk or cycle	5,447	1	5	18	4,243
	Vocational Training	3,648	1	3	18	2,901
	Satisfactory landlord maintenance	2,606	1	38	18	1,324
	Rectification of mould	6,495	1	0	18	5,325
	Regular volunteering	5,344	1	30	18	3,067
NHSE	Reduced number of bed days ¹	600	14*	25	18	6,300
					Total Social Value	150, 294

*Refers to the reduction in number of bed days rather than number of people experiencing the outcome

¹ Jones, K. & Burns, A. (2021) Unit Costs of Health and Social Care 2021, Personal Social Services Research Unit, University of Kent, Canterbury. DOI: 10.22024/UniKent/01.02.92342

Table 11

Total social value
Social outcomes	Mental Health outcomes	Direct Financial outcomes
£150, 294	£33,725	£21,842
		Total Value = £205, 861

The total value of outcomes for the 19 children (18 families) in the evaluation study (£205,861) divided by the value of inputs required to deliver the SPACE CYP project for one year including support for all 49 families (£74,736) generates a SROI ratio of £2.75 of social value generated for every £1 spent.

Social risks are common in the paediatric inpatient setting ²² but are not systematically addressed in routine practice. Children with disabilities face significant inequities and have recently been recognised by the National Institutes of Health as a health disparity population ⁴³. Our study demonstrates feasibility and acceptability of a hospital in-reach social prescribing service for children with neurodisability and their families.

The number of children referred to the service exceeded our estimates; however, not all these met eligibility criteria for the study. This was largely due to their residing outside of the geographic area that we pre-specified. Our rationale for specifying an area of residence was to ensure LWs would have a good knowledge of services within this area, and so that travel to events or services with families, if required, was feasible. The challenge within a pilot study was that there was no similar service in nearby regions, so LWs supported families outside of the study area as part of the service. Retention of children and families through the study met feasibility criteria, with high levels of benefit in terms of achievement of goals set. Qualitative feedback showed strong support for the service from families and healthcare staff, with interest from both groups in extending eligibility criteria to other patient groups and other settings such as outpatients. We intend to explore these options in our ongoing work.

One consideration regarding eligibility is whether all children in hospital should be screened for unmet social needs and support offered on this basis. In the United States, screening for social determinants of health has been mandated by the Centers for Medicare and Medicaid services from 2024, though a range of screening tools are used in practice ⁴⁴. Systematically screening for social determinants of child health in “well child” community reviews and referring as appropriate improves use of community resources by families ⁴⁵. This approach could help with prioritisation of families for support but would need exploration and evaluation in a UK setting.

Data from qualitative interviews and questionnaires highlighted the importance of a hospital in-reach approach, identifying families who had “fallen through the net”, with high levels of unmet social needs. Families had little time or energy to address these needs on their own, in the context of having a child with complex chronic health needs. The co-location of LW staff and HCPs facilitated communication and referrals, also helping referrers to understand the role of the LW ⁴⁶. Qualitative interviews captured a range of views on why needs had not been met by existing services – these included: lack of parental “headspace” to think about what was required and search websites for relevant information, discomfort about making time for their own wellbeing in the face of illness in their child, mental exhaustion associated with the effort of applying for support, and sometimes a feeling of perceived stigma at the involvement of statutory services. There were some initial barriers to LW input in our pilot, with the need to understand the potential value and gain trust in the LW, but these were easily overcome.

The value of provision of “in-person service navigation” over an active control such as written information has been demonstrated in previous research involving children in primary care settings ⁴⁷, showing improved social situation and overall health. Given the level of burnout seen in parents of children with complex chronic needs ⁴⁸, LW support is likely to be even more valuable in this population, even if the potential to benefit overall health may be lower and the impact of the underlying medical condition is large.

A family-based approach was appropriate in our setting for several reasons. Firstly, most children in the study required their parents to advocate for them due to young age or communication challenges. Secondly, there was an impact on the financial, emotional and mental wellbeing of parents and siblings, which is recognised in families of children with medical complexity ⁴⁹. Thirdly, many goals were at a family level, or were set on the premise that improving parental wellbeing was important in its own right and in supporting parents to be in a position to fulfil their critical and challenging roles in looking after their children with additional needs ¹⁹. In theory there could have been conflicting interests in relation to goals, but we were not aware of any outcomes from goals which disadvantaged the child.

One important finding was the lack of prior knowledge of the LW role amongst hospital staff and patients, despite this role being relatively well established in community services in the UK. This may reflect the unique situation of our LWs within secondary and tertiary care children’s services in contrast to most SP schemes which involve LWs supporting adults within the community. However, it is also symptomatic of a wider issue of awareness and buy-in reported elsewhere, including in GP surgeries where the relative priority of making referrals to LWs has sometimes been viewed as low in comparison to addressing clinical situations ⁵⁰. More work is needed to increase awareness and buy-in from clients and referrers. The term “social prescribing” is counter-intuitive and often not initially understood ⁵¹. A recent study surveying views on SP found that HCPs felt they would make more referrals if they had a better understanding of the SP role ⁵². Co-location of LWs with referrers can help to resolve this issue by increasing visibility of the service and fostering greater collaborative work between professionals ^53,54. There is a clear need to continue to promote knowledge and understanding of the LW role where services are in their infancy. Short videos describing our pilot service from the point of view of different stakeholders were produced as an output of this project (https://www.youtube.com/@ways2wellnessUK). The use of infographics to explain the LW role could be further explored. Feedback mechanisms to better convey the outcomes of SP referrals to referrers could also help build trust in the service.

Practical arrangements such as training, line management and support/supervision for the LW in-reach service were generally feasible but critical to consider. Whilst there are national recommendations for LWs working with children and young people (StreetGames toolkit), the hospital setting provides additional challenges in terms of the emotional burden shared by families with children experiencing serious illnesses, sometimes terminal; accessibility of services to children with mobility issues; and working with children with significant communication difficulties. The LWs could be considered to have a “specialist” role, supporting a group of children with complex chronic health needs and their families: equally, it is important that the boundaries of LW roles are respected and that social work, crisis mental health teams, palliative care and indeed acute hospital services are used where appropriate.

The SROI analysis highlights that social prescribing administered by LWs generates social value for children with neurodisability and their families, with an SROI ratio of at least £2.75 for every £1 spent. This was calculated based on inputs related to supporting 49 families, and outputs (social value) related to the 19 children (18 families) in the detailed evaluation study. It is reasonable to assume that further social value was gained by the other families supported by the service who were not part of the detailed evaluation study. However, it is also likely that the social value per family is not comparable between the two groups. This is because the service supported some families who were not eligible for the detailed evaluation due to living outside the recruitment area, and LWs were more limited in what they could offer under these circumstances.

The findings suggested that social value was generated to participants through increased mental wellbeing, increased material benefits, increased social connectivity and increased knowledge of services, which aligns with the outcomes proposed in the theory of change. Data from qualitative interviews highlighted that participants attributed 82% of the observed benefits towards the SPACE CYP project. The theory of change also hypothesised that there would be cost saving to the NHS and fewer barriers to discharge following LW support. This was also met where LWs facilitated a faster discharge resulting in cost saving to the NHS (£6,500 in bed days). The SPACE CYP project also resulted in cost savings for families through sourcing holiday funding, referral to charities for counselling and items/activities paid for by Ways to Wellness, an external organisation employing the LWs.

The study design lacked a control group. We considered that leaving a vulnerable population with high levels of social needs without support for the purposes of control data would be unethical. The issue was moderated by accounting for deadweight, attribution and displacement. In the future, it may be appropriate to supply participants with a follow-up questionnaire, rather than using data from qualitative interviews.

The main barrier to ongoing service provision is funding. The two main components of this are the relative lack of LW provision for children and young people in contrast to adults ⁹ and the focus on community-based SP services. There is also the issue of who should be addressing health inequalities in children’s hospitals – this is perceived as “everyone’s business” but “no-one’s responsibility” ⁵⁵, which makes it more challenging to find the most appropriate source of funding. We maintain that a hospital in-reach service is justified, based on our findings, and ultimately links patients back up to community services which would otherwise be bypassed.

Apart from the qualitative interviews, outcomes for families were best captured by the Support Star and the number of goals met, by domain. Others have also struggled to identify appropriate outcome measures for SP and have found goal-based outcomes valuable in practice ⁵⁶. Mental wellbeing and quality of life outcomes might require a longer duration of support for statistically significant benefit to be seen. However, deterioration in the child’s physical wellbeing has a large adverse effect on outcomes, as was discussed by one of the parents. This is a major challenge in demonstrating the benefit of LW support for children with significant health needs and their families. Traditionally, a randomised trial with a control group would be an appropriate method but the sample size would need to be very large to compensate for the wide range of pathologies encompassed by “neurodisability” and the range of LW interventions as driven by individual needs. Furthermore, a trial would only be appropriate if we were in equipoise regarding the potential for benefit. We are in no doubt that families have benefitted from LW support: the focus for future research should encompass health service delivery and economic aspects. However, there remains a place for a new, family-based wellbeing outcome measure for use to capture baseline and post-intervention scores.

Strengths of the study include collection of a large amount of detailed information for each family. Limitations include the small sample size and single site, as well as the necessity to use proxy measures for most child outcomes. It was not possible to capture the patient voice in interviews, largely due to communication challenges faced by the children recruited, but we intend to do this in future studies.

In summary, our pilot service and evaluation demonstrate the feasibility and acceptability of a hospital in-reach SP LW service for children with neurodisability and their families, evidencing a high level of baseline unmet social needs and proof of concept that families can be effectively supported to achieve mutually agreed goals.

Ethics approval and consent to participate

Ethical approval for the study was provided by NorthWest - Greater Manchester Central Research Ethics Committee (ref 22/NW/0110). Written informed consent (or parental consent as appropriate) was obtained from all participants.

Consent for publication – not applicable.

Availability of data and materials

The datasets generated during and/or analysed during the current study are not publicly available in the interests of confidentiality but subsets are available from the corresponding author on reasonable request.

Competing interests

The authors declare that they have no competing interests.

Funding

This work is funded by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) North East and North Cumbria (NENC) (NIHR200173); by the GNCH Foundation Charity and by Ways to Wellness. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

Authors' contributions

LG and MH contributed substantially to data acquisition, analysis, interpretation, and to the written manuscript. AB supervised, oversaw, reviewed and built on a SROI analysis with MH, and wrote the final version of SROI sections in the manuscript. KG contributed substantially to data acquisition. EG contributed substantially to quantitative data analysis. SD contributed substantially to data acquisition and analysis. TR contributed substantially to data analysis and interpretation. APB conceived and designed the project, oversaw data acquisition, analysis, contributed substantially to interpretation and wrote the manuscript.

All authors have approved the submitted version and agree accountability for the accuracy and integrity of the work.

Acknowledgements

We would like to thank all referrers and participants. Thank you to our link workers for utter dedication to improving the lives of children with neurodisability and their families, and to Ways to Wellness colleagues in particular Simon Bromhead, Sonia Townend and Sandra Mitchell-Phillips for continued support. Thank you to the team at HACT for permission to use the HACT database for analysis of the pilot data. We would like to thank Toby Quibell, Jenna Charlton and Alex Battersby for helpful discussions and shared learning.

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No competing interests reported.

FigureS1SROIlogicmodel.pdf
Figure S1: SROI logic model
S2TopicguideSPACECYP.pdf
S2: Topic guides for qualitative interviews

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Hospital in-reach family-centred social prescribing pilot for children with neurodisability: mixed methods evaluation with social return on investment analysis

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Abstract

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Background

Aim:

Methods

Design and setting

Participants, inclusion and exclusion criteria

Sample size

Participant Identification and Recruitment

Intervention

Data collection/Assessments

Data analysis

SROI Analysis

Results

Baseline assessments

End of study assessments

Qualitative analysis

Context of the child and family preceding LW support

(Whitney, IV-F9, 32)

(Harriett, IV-F13, 15)

(Melissa, IV-F24, 253)

B) Experiences of meeting LW and support offered

C) What changed for the families due to the intervention

D) Suggestions for the service

SROI Analysis

Discussion

Declarations

References

Additional Declarations

Supplementary Files

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Version 1