Content uploaded by Christopher Morris
Author content
All content in this area was uploaded by Christopher Morris on Jan 27, 2015
Content may be subject to copyright.
A preview of the PDF is not available
What are the benefits and costs of providing peer support to parents of disabled children?
Abstract and Figures
We evaluated the one-to-one befriending service offered to parents of disabled children by Face2Face (F2F) in Devon and Cornwall. Parents’, befrienders’ and professionals’ views and experiences of peer support were generally positive but it can be hard to measure the impact of peer support. We found that there were important impacts for the parents who supported others, as well as those receiving support. In particular this group benefitted from the training and ongoing mutual support. We think it is important that people think carefully about whom peer support is likely to have an impact on when they design evaluations; who you include will affect how the service is valued in terms of costs and benefits.
Figures - uploaded by Christopher Morris
Author content
All figure content in this area was uploaded by Christopher Morris
Content may be subject to copyright.
Supplementary resource (1)
... The UK Department of Health and Social Care is promoting increased roles for the voluntary, community and social enterprise sector in delivering health and social care [24] and peer support may be a cost-effective option [25]. In our recent systematic review of peer support for parents of disabled children, qualitative studies consistently suggest that recipients of peer support perceive a benefit, an effect seen across different types of medical conditions [26][27][28][29]. Research also suggests benefits for being a peer supporter including increased confidence, self-esteem and facilitating their own recovery [22]. ...
Background:
Parents of babies admitted to neonatal units experience an arduous emotional journey. Feelings of helplessness, fear, sadness, guilt, grief and anger are common. These feelings can lead to anxiety, depression and post-traumatic stress which may persist long after discharge from the unit. Support from a parent with first-hand experience able to empathise with problems and challenges may help. This systematic review will identify quantitative and qualitative evidence to address the role of parent-to-parent support interventions for families of babies cared for in neonatal units, and combine the findings in an integrated synthesis.
Methods:
We are working in collaboration with a study-specific Parent Advisory Group (PAG) of parents who have relevant and varied lived experience of having a baby in neonatal care and those who have been involved in providing peer support. With the PAG, we will carry out a systematic review bringing together all existing research on parent-to-parent support for parents of babies cared for in neonatal units. This will be reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. The protocol has been produced in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocol extension (PRISMA-P). We have co-produced a plain language protocol summary with the PAG which details the different stages of the project, and this is available via our website ( http://clahrc-peninsula.nihr.ac.uk/research/parent-to-parent-support ) for anyone interested in learning more about the detail of the project.
Discussion:
All outputs will be available on the NIHR CLAHRC South West Peninsula (PenCLAHRC) website and promoted via PenCLAHRC networks as well as organisations that have been contacted throughout the project. PAG members will be involved in writing and reviewing the academic paper and final report and in co-producing dissemination products such as plain language summaries. The PAG will influence the main conclusions of the systematic review, aid interpretation and help to communicate results in the most appropriate ways. We will hold an impact conference with representatives from neonatal units, national neonatal networks, commissioners of services and parents to discuss what the findings mean for clinical practice and service provision.
Systematic review registration:
PROSPERO CRD42018090569.
Aim:
To review the qualitative and quantitative evidence of the benefits of peer support for parents of children with disabling conditions in the context of health, well-being, impact on family, and economic and service implications.
Method:
We comprehensively searched multiple databases. Eligible studies evaluated parent-to-parent support and reported on the psychological health and experience of giving or receiving support. There were no limits on the child's condition, study design, language, date, or setting. We sought to aggregate quantitative data; findings of qualitative studies were combined using thematic analysis. Qualitative and quantitative data were brought together in a narrative synthesis.
Results:
Seventeen papers were included: nine qualitative studies, seven quantitative studies, and one mixed-methods evaluation. Four themes were identified from qualitative studies: (1) shared social identity, (2) learning from the experiences of others, (3) personal growth, and (4) supporting others. Some quantitative studies reported a positive effect of peer support on psychological health and other outcomes; however, this was not consistently confirmed. It was not possible to aggregate data across studies. No costing data were identified.
Conclusion:
Qualitative studies strongly suggest that parents perceive benefit from peer support programmes, an effect seen across different types of support and conditions. However, quantitative studies provide inconsistent evidence of positive effects. Further research should explore whether this dissonance is substantive or an artefact of how outcomes have been measured.
The benefits of health and social care are not confined to patient health alone and therefore broader measures of wellbeing may be useful for economic evaluation. This paper reports the development of a simple measure of capability wellbeing for adults (ICECAP-A).
In-depth, informant-led, interviews to identify the attributes of capability wellbeing were conducted with 36 adults in the UK. Eighteen semi-structured, repeat interviews were carried out to develop a capability-based descriptive system for the measure. Informants were purposively selected to ensure variation in socio-economic status, age, sex, ethnicity and health. Data analysis was carried out inductively and iteratively alongside interviews, and findings were used to shape the questions in later interviews.
Five over-arching attributes of capability wellbeing were identified for the measure: "stability", "attachment", "achievement", "autonomy" and "enjoyment". One item, with four response categories, was developed for each attribute for the ICECAP-A descriptive system.
The ICECAP-A capability measure represents a departure from traditional health economics outcome measures, by treating health status as an influence over broader attributes of capability wellbeing. Further work is required to value and validate the attributes and test the sensitivity of the ICECAP-A to healthcare interventions.
We compared depression, anxiety, anger, cognitive disturbance, and total scores on the Psychiatric Symptom Index (Ilfeld, 1976) for 365 mothers of 5-to-8 year-olds with diverse health conditions who were randomized either to an experimental (EG) or control (CG) group. EG mothers were offered a 12-month community-based support intervention; CG mothers received standard care. Posttest scores of EG and CG mothers did not differ significantly. Although intervention effects were not related to participation level or illness-related and sociodemographic factors, a significant interaction with stressful life events (SLE) was found. Among mothers reporting more than five SLE in the past year, posttest anxiety was lower in the EG than in the CG, but no difference was found between EG and CG mothers having less than five SLE. The intervention also acted as a moderator variable, with correlations of SLE and posttest depression, anxiety, and total symptoms significantly lower in the EG than CG. Possible explanations for these findings are discussed. © 1997 John Wiley & Sons, Inc.
Complex interventions, involving interlinked packages of care, challenge the application of current methods of economic evaluation that focus on measuring only health gain. Complex interventions may be problematic on two levels. The complexity means the intervention may not fit into one of the current appraisal systems, and/or maximising health is not the only objective. This paper discusses the implications of a programme of work that focused on clinical genetics services, as an example of a complex intervention, and aimed to identify the following: the attributes that comprise both health and non-health aspects of benefits and whether it is possible to evaluate such an intervention using current National Institute for Health and Clinical Excellence appraisal processes. Genetic services and tests are a good example of a complex intervention and have broader objectives than just health gain, which may usefully be measured using the concept related to capability, which we have called 'empowerment'. Further methodological work is required to identify the trade-off between non-health (empowerment) and health benefits for other complex interventions. We do not advocate a move away from QALY maximisation but do suggest that there is a need for a more considered approach that can take account of the perceived value for non-health attributes for some complex interventions. Copyright © 2012 John Wiley & Sons, Ltd.
Cardiovascular disease (CVD) often arises from modifiable lifestyle factors. Health care professionals may lack the skills and resources to sustain behaviour change, lay 'health trainers' (LHT) offer a potential alternative. We sought to assess the cost-effectiveness of using a LHT to improve heart-health lifestyles in deprived communities.
Participants in this randomized trial were aged ≥18 years with at least one risk factor for CVD (hypertension, raised cholesterol, diabetes, BMI>30 or current smoker). Both groups received health promotion literature. LHT were also able to provide intervention participants with information, advice and support aimed at changing beliefs and behaviour. Costs and quality-adjusted life year (QALY) changes were estimated over 6 months. The cost-utility [incremental cost-effectiveness ratio (ICER)] of LHT was calculated and assessed in relation to the cost-effectiveness threshold of £20 000-30 000 per QALY. The probability of LHT being cost-effective was also calculated.
Seventy-two participants were randomized to a LHT, with 38 controls. The mean cost of the LHT intervention was £151. On average, other health and social service costs fell by £21 for controls and £75 for intervention participants giving a LHT mean overall incremental cost of £98. The mean QALY gains were 0.022 and 0.028, respectively. The ICER for LHT was £14 480, yet there was a 61% chance of making the wrong decision at a £20 000/QALY threshold.
LHT provision was estimated to be cost-effective for people at risk of CVD. However, a large level of uncertainty was associated with that decision.
ABSTRACT Health care providers have adopted a family-centered care (FCC) approach. Parent satisfaction is an indicator of the effectiveness of FCC. The purpose of this project was to describe parent perceptions of the extent to which FCC behaviors occurred in an outpatient pediatric rehabilitation facility. The Measure of Processes of Care (MPOC)-20, a quantitative measure of parent perceptions related to FCC, was completed by 246 families with children receiving outpatient rehabilitation services. Eleven parents were randomly selected to participate in individual interviews. Four themes emerged, which are as follows: (a) parents were satisfied; (b) parents valued personal and sustained connections with professionals; (c) parents expressed a desire to interact with other parents; and (d) some parents may benefit from additional written information. Sustained connections with professionals and opportunities to interact with other parents were important aspects of care provision. Provision of written information was ranked lower than other domains on the MPOC-20.