Antony Duttine

Cochrane Rehabilitation and the World Health Organization (WHO) Rehabilitation Programme have collaborated to produce four Cochrane overviews of systematic reviews synthesizing evidence from health policy and systems research (HPSR) in rehabilitation. Each overview focuses on one of the four HPSR pillars identified by the Cochrane Effective Practice and Organisation of Care (EPOC) taxonomy: delivery, financial, and governance arrangements; and implementation strategies. This overview addresses delivery arrangements, which Cochrane EPOC defines as how health services are organized and delivered, including who provides care, how care is coordinated and managed, and where services are provided. This overview aimed to synthesize current evidence on delivery arrangements in rehabilitation from an HPSR perspective. Our series of four overviews has the following overarching objectives. • To offer a broad synthesis of existing evidence on health policy and systems interventions' effects. • To direct end-users, including policymakers, towards systematic reviews that may address their health policy questions. • To identify current research gaps and set priorities for future primary HPSR. • To pinpoint needs and priorities for new evidence syntheses where no reliable, up-to-date systematic reviews currently exist. We searched Epistemonikos Health Systems Evidence databases and EPOC Group systematic reviews with no language limitations to identify reviews published between 2015 and 17 November 2024. We included Cochrane systematic reviews (CSRs) and non-CSRs of randomized controlled trials (RCTs) and non-randomized studies of interventions (NRSIs) evaluating the effectiveness of health policy and systems interventions for rehabilitation in health systems, specifically related to delivery arrangements as defined in the EPOC taxonomy. All four overview teams screened reviews and extracted data. We used AMSTAR 2 to critically appraise the reviews, and we analyzed the results descriptively. We included 25 systematic reviews. Three overlapped, and for 17 the AMSTAR 2 rating was low or critically low confidence. Five systematic reviews (2 CSRs and 3 non-CSRs) contributed to our synthesis. Most outcomes focused on patients, caregivers, or service use (e.g. access to rehabilitation). Equity-related outcomes were absent, and quality of care, adverse events, and our important outcomes were rarely reported. Below, we report the results of three of the five reviews judged to have moderate to high confidence for our outcomes of interest, in which authors conducted meta-analysis and assessed the certainty of the evidence. Who provides care One review analyzed advanced practice physiotherapy (APP) models, which may result in little to no difference in health-related outcomes measured by the Pain Disability Index and EuroQol 5-Dimension questionnaire after the intervention, compared with usual care in adults with spinal pain (standardized mean difference [SMD] 0.05, 95% confidence interval [CI] -0.32 to 0.42; 2 studies, 225 participants; low certainty). Information and communication technology We included two reviews in this category. One compared telerehabilitation with usual care in older adults, finding that telerehabilitation may have little or no effect on quality of life after seven to 20 weeks (SMD -0.09, 95% CI -0.23 to 0.40; 3 studies, 179 participants; low certainty). There was very low-certainty evidence on mobility after seven to 26 weeks (SMD 0.63, 95% CI -0.25 to 1.51; 5 studies, 302 participants), strength after 12 and 26 weeks (SMD 0.73, 95% CI -0.10 to 1.56; 4 studies, 226 participants), and balance after seven to 26 weeks (SMD 0.40, 95% CI -0.35 to 1.15; 3 studies, 199 participants). Another review on stroke survivors living in the community found that telerehabilitation compared with usual care probably has little or no effect on independence in activities of daily living (ADL) after 24 weeks (SMD 0.00, 95% CI -0.15 to 0.15; 2 studies, 661 participants; moderate certainty), self-reported quality of life after six to 24 weeks (SMD 0.03, 95% CI -0.14 to 0.20; 3 studies, 569 participants; moderate certainty), and depression after six to 24 weeks (SMD -0.04, 95% CI -0.19 to 0.11; 6 studies, 1145 participants; moderate certainty); and may have little or no effect on upper limb function after 12 weeks (SMD 0.33, 95% CI -0.21 to 0.87; 2 studies, 54 participants; low certainty) and mobility after six weeks (mean difference 0.01, 95% CI -0.12 to 0.14; 1 study; 144 participants; low certainty). This review also compared telerehabilitation with in-person rehabilitation and found that there may be little to no difference in independence in ADL, measured with the Modified Barthel Index at four to 12 weeks (MD 0.59, 95% CI -5.50 to 6.68; 2 studies, 75 participants; low certainty); balance, measured with the Berg Balance Scale at four to 12 weeks (MD 0.48, 95% CI -1.36 to 2.32; 3 studies, 106 participants; low certainty); and upper limb function, evaluated with the Fugl-Meyer Assessment (Upper Extremity) four weeks after intervention (MD 1.23, 95% CI -2.17 to 4.64; 3 studies, 170 participants; low certainty). Current evidence on delivery arrangements in rehabilitation is limited, mostly of low certainty, and derived from high-income countries. Reviews covered five EPOC categories, but reliable evidence for our outcomes of interest was available for only two categories. Most evidence was on telerehabilitation. Compared with usual care, APP models may have little to no effect on health outcomes in adults with spinal pain. In people with stroke, telerehabilitation compared with usual care probably has little or no effect on independence in daily living, quality of life, and depression, and may have little to no effect on upper limb function and mobility. Compared with in-person care, telerehabilitation may have little to no effect on ADL, balance, and upper limb function. Further...

Background Cochrane Rehabilitation and the World Health Organization (WHO) Rehabilitation Programme have collaborated to produce four Cochrane overviews of systematic reviews that synthesize current available evidence from health policy and systems research (HPSR) in rehabilitation. Each overview focuses on one of the four pillars of HPSR as identified by the Cochrane Effective Practice and Organisation of Care (EPOC) taxonomy: delivery arrangements, financial arrangements, governance arrangements, and implementation strategies. This overview examined implementation strategies, defined by EPOC as interventions designed to bring about changes in healthcare organizations, the behavior of healthcare professionals, or the use of health services by healthcare recipients. Objectives This overview aimed to synthesize current evidence on implementation strategies in rehabilitation from a health policy and systems research (HPSR) perspective. Our series of four overviews have the following overarching objectives. • To offer a broad synthesis of the existing evidence on health policy and systems interventions' effects. • To direct end‐users, including policymakers, towards systematic reviews that may address their health policy questions. • To identify current research gaps and set priorities for future primary HPSR. • To pinpoint the needs and priorities for new evidence syntheses where no reliable, up‐to‐date systematic reviews currently exist. Methods We searched the Epistemonikos database, the Health Systems Evidence database, and EPOC Group systematic reviews to identify reviews published between 1 January 2015 and 17 November 2024. We applied no language limitations. We included Cochrane and non‐Cochrane systematic reviews of randomized controlled trials (RCTs) and non‐randomized studies of interventions (NRSIs) that evaluated the effectiveness of health policy and systems interventions for rehabilitation in health systems, specifically related to implementation strategies as defined in the EPOC taxonomy. All four overview teams collaborated to screen reviews and extract data. We used AMSTAR 2 to critically appraise the quality of the reviews. Results were analyzed descriptively and are based on reviews with ratings of high‐to‐moderate confidence, with low‐confidence reviews reported separately. Main results We identified 7882 systematic reviews, of which 15 met our inclusion criteria. Three reviews overlapped substantially with other reviews, and eight received low‐ or critically low‐confidence ratings. Ultimately, four moderate‐ to high‐confidence reviews contributed to the synthesis; two were Cochrane systematic reviews. Most primary studies were from high‐income countries; none were from low‐income countries. Most strategies targeting healthcare professionals (e.g. guideline dissemination, interactive workshops, opinion leaders, audit and feedback) or healthcare recipients (e.g. structured monitoring, telehealth support, counseling, motivational interviewing) included more than one component. Strategies targeting healthcare recipients' use of health services in cardiac rehabilitation may show small benefits in terms of participation (enrollment, adherence, completion), but effects on other outcomes are uncertain. The effects of strategies targeting older healthcare recipients via telehealth are uncertain. Strategies targeting healthcare professionals may have little to no effect on professional or patient and carer outcomes in stroke rehabilitation. For musculoskeletal conditions, there were no evidence‐certainty ratings, so intervention effects are unclear. We found no reviews of strategies targeting health service organizations or specific types of rehabilitation practice. The evidence certainty was generally low; evidence of adverse events was missing or uncertain; and reporting on organizational, implementation, economic, and equity outcomes was scarce. Authors' conclusions Current evidence on implementation strategies in rehabilitation is limited, mostly of low certainty, and derived from high‐income countries. Multicomponent, patient‐targeted strategies may modestly improve cardiac rehabilitation participation, but effects in other areas remain uncertain. Further high‐quality research using well‐defined frameworks is needed, especially in low‐ and middle‐income countries, to identify effective strategies and evaluate organizational, implementation, and equity outcomes. Future Cochrane overviews of reviews in HPSR should consider including a broader range of study designs, such as observational, qualitative, and mixed‐methods evidence, to better capture evidence on implementation strategies in rehabilitation. Funding This Cochrane review was funded by the Italian Ministry of Health (Ricerca Corrente). The funder played no role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript. Registration The protocol was first published in the European Journal of Physical and Rehabilitation Medicine online on 27 January 2025. The manuscript was received on 11 November 2024 and was accepted on 26 November 2024. Protocol: DOI 10.23736/S1973‐9087.24.08833‐6.

Background: The 2015-16 Zika epidemic resulted in thousands of children born with congenital Zika syndrome (CZS). In Brazil, gaps in the health system often caused parents to be left with insufficient information and support. Consequently, we developed and piloted Juntos - a participatory support programme which aims to improve knowledge, capacities and build support networks for caregivers of children with CZS. Methods: Six caregiver groups received the programme between August 2017 and June 2018: three in Rio de Janeiro and three in Bahia. We assessed the feasibility of Juntos against six of the eight areas of a feasibility framework described by Bowen et al. to consider whether Juntos ‘could work’. These areas were: acceptability, demand, implementation, practicality, adaptation and limited efficacy. We used mixed methods including: 1) baseline and end-line questionnaires completed by all group participants; 2) in-depth interviews with 18 participants, seven facilitators and three key stakeholders; 3) participant focus group discussions after each session; 4) researchers session observation; and 5) recording programme costs. Results: 37/48 (77%) enrolled families completed both questionnaires. Acceptability and demand were noted as high, based on participant responses to interview questions, focus group feedback and satisfaction scores. Potential for implementation and practicality were also demonstrated through interviews with facilitators and key stakeholders and analysis of project documents. Two groups included caregivers of children with non-Zika related developmental disabilities, showing potential for adaptability. Self-reported quality of life scores increased in caregivers between baseline and end-line, as did the dimensions of family relationships and daily activities in the Pediatric Quality of Life Inventory (PEDS QL) Family Impact Module, showing limited efficacy. Conclusions: The programme showed feasibility according to Bowen’s framework. However, further research of scale up, particularly in the areas of integration, expansion and limited efficacy are needed to ascertain if the programme is effective.

Background: The 2015–2016 Zika virus outbreak in Brazil was unprecedented and resulted in the birth of more than 3,000 children with congenital Zika syndrome (CZS). These children experience multiple complex health conditions and have limited services to support them and their family’s needs. Program Development and Piloting: An existing family support program for children with cerebral palsy (Getting to Know Cerebral Palsy) was adapted to the Zika context in Brazil through expert consultation. The program was pilot tested at 2 sites among 6 groups of caregivers (total of 48 families) from August 2017 to June 2018. Group observation and focus group discussions with facilitators and participants at the end of each session informed fast-track learning, which was used to tailor the program for future groups. Fast-track learning—adjusting the intervention in real time based on gathered feedback—was found to be a helpful process to inform and hone the program from its initial concept. Program Description: The intervention, Juntos, is a facilitated participatory group program for caregivers of children who have CZS. The group sessions are cofacilitated by a parent of a child who has CZS and an allied health professional. The group meets for 10 sessions that last 4 hours. Each session includes an icebreaker, activities, and group discussions. Content covers practical information on caring for a child with a developmental disability including that caused by Zika. Psychosocial support forms an important component, and families are guided from the first week to define and develop their own communities of support. Six pilot groups were successfully run in Rio de Janeiro and Greater Salvador, Bahia. The groups gave positive feedback on acceptability and demand. Conclusions: The program has the potential to be an important tool for community health and social support services in South America in response to Zika. The program can also be applied to children with neurodevelopmental disabilities other than those caused by the Zika virus, which could be important in ensuring families of children with CZS are less isolated. Development of Juntos, a community-based family support program for caregivers of children with congenital Zika syndrome, contained innovative approaches such as using mothers as facilitators, fast-track learning, and de-isolation of families affected by Zika. Key Messages A community-based family group program for caregivers of children with congenital Zika syndrome (CZS) was developed based on an existing program for families of children with cerebral palsy and pilot tested in Brazil. Program managers developing group initiatives should consider fast-track learning approaches to adjust their intervention to make it more useful to participants. Clinicians and managers of Zika initiatives should consider that caregivers of children with CZS will likely benefit from the ability to engage and exchange with caregivers of children with other neurodevelopmental disabilities. Program managers delivering community interventions targeting caregivers should consider engaging expert mothers as group cofacilitators. Integrating emotional support activities into groups that address child development is important, and adds value. Resumo em português no final do artigo.

The Zika virus outbreak in Brazil (2015–2016) affected thousands of children who were born with Congenital Zika Syndrome (CZS). Families play an important role in their care of children with complex needs, yet their knowledge, experience and skills are rarely harnessed in existing interventions to best support these families. This study explores the use of mothers as facilitators for a community-based group intervention for children with CZS and their caregivers in Brazil. Four facilitators were trained to deliver the 10-week intervention called “Juntos”. Two were mothers of a child with CZS (“expert mothers”) and two were therapists (speech therapist and physiotherapist). The intervention was delivered to three groups, generally including 8–10 caregivers. Two researchers, who were psychologists, observed the groups and held focus group discussions at the end of each session. They undertook semi-structured interviews post intervention with a purposive sample of caregivers, and with the facilitators. Observation notes were collated and summarised. Transcripts were transcribed and thematically analysed using five elements to assess feasibility: acceptability, demand, implementation, practicality and adaptation. The use of expert mothers as facilitators was considered to be acceptable and there was demand for their role. Their experiential knowledge was viewed as important for sharing and learning, and supporting and encouraging the group. The intervention was delivered with fidelity by the expert mothers. The practicality of the intervention was facilitated by holding the group sessions in the community, providing transport costs to facilitators and participants, paying expert mothers and therapist facilitators equally and supporting the expert mothers through a mentorship programme. Equal payment with the therapist enabled the expert mothers to better facilitate the groups, through increased confidence in the value of their role. Adaptation of the intervention included development of video resources and mentoring guidelines. The use of expert mothers as facilitators of caregiver groups provides a unique approach to harness the knowledge, experience, and skills of families to provide care, and is likely to be feasible in similar contexts.

The Zika outbreak in Brazil caused congenital impairments and developmental delays, or Congenital Zika Syndrome (CZS). We sought to ascertain whether a family support programme was needed and, if so, could be adapted from the Getting to Know Cerebral Palsy programme (GTKCP) designed for children with cerebral palsy (CP). We conducted a systematic review of the needs of families of children with CZS or CP in low- and middle-income countries and reviewed the findings of the Social and Economic Impact of Zika study. We undertook a scoping visit to three facilities offering services to children with CZS in Brazil to understand potential utility and adaptability of GTKCP. The literature review showed that caregivers of children with CZS experience challenges in mental health, healthcare access, and quality of life, consistent with the CP literature. The scoping visits demonstrated that most support provided to families was medically orientated and while informal support networks were established, these lacked structure. Caregivers and practitioners expressed an eagerness for more structure community-based family support programmes. A support programme for families of children with CZS in Brazil appeared relevant and needed, and may fill an important gap in the Zika response.

We aimed to explore the engagement of fathers in a community-based group intervention (Juntos) for children with congenital Zika syndrome (CZS) and their caregivers in Brazil. Six Juntos groups were facilitated from August 2017 to May 2018. We conducted a qualitative study to evaluate the feasibility and acceptability of the intervention for fathers of children with CZS. Methods included participant observation, focus group discussions, and semi-structured interviews of fathers with a child enrolled in the program. Data collected were transcribed, coded and thematically analyzed to explore father preference for, and beliefs about the intervention and to assess potential barriers and enablers to their involvement. Forty-nine families (61 participants) enrolled, of whom 20% (12/61) were fathers. Seven (58%) fathers attended more than 7 out of 10 sessions. The content of Juntos was found to be acceptable to those fathers who attended. Participation in the group offered fathers the opportunity to share experiences of caring for their child and demonstrate their importance as care agents. Work commitments, and the view of mothers as primary caregivers were barriers to engagement of fathers. Facilitators to engagement included a presentation of clear objectives for fathers’ involvement and the opportunity to learn a practical skill related to caring for their child. A better understanding of the perspectives of fathers is crucial to help increase their involvement in parenting interventions.

The Zika virus outbreak in Brazil in 2015 affected thousands of people. Zika is now known to cause congenital malformations leading to impairments and developmental delays in affected children, including Congenital Zika Syndrome (CZS). Children with CZS have complex care needs. Caregivers require significant levels of support to meet these needs, and there are large gaps in healthcare services. This study aims to develop, pilot and assess the feasibility and scalability of a community-based Family Support Programme for caregivers of children with CZS. The programme is adapted from the Getting to Know Cerebral Palsy (GTKCP) programme for the context of CZS in Brazil. GTKCP is a 10-session programme held with 6-10 caregivers in the local community. It includes practical, educational, peer-support and psychosocial aspects, which aim to improve confidence and capacity to care for a child with CP, and quality of life and empowerment of caregivers. The research project contains four components: Ascertaining need for the caregiver programme: a mixed-methods approach that included two literature reviews, interviews with key stakeholders in country, and incorporation of findings from the Social and Economic Impact of Zika study. Adapting GTKCP for the context of CZS and Brazil: undertaken with guidance from technical experts. Pilot testing the intervention: deliver the 10-session programme to one group of caregivers of children with CZS in Rio de Janeiro and another in Greater Salvador. Update the manual through fast-track learning from participant and facilitator feedback. Assessing the feasibility of the intervention for scale up: deliver the updated programme to two groups each in Rio de Janeiro and Greater Salvador, and evaluate the acceptability, demand, implementation, practicality, adaptation, integration, expansion, and limited efficacy, through questionnaires, direct observation, semi-structured interviews and cost calculation. The project has ethics approval in both the UK and Brazil.

Universal health coverage (UHC) has been adopted by many countries as a national target for 2030. People with disabilities need to be included within efforts towards UHC, as they are a large group making up 15% of the world’s population and are more vulnerable to poor health. UHC focuses both on covering the whole population as well as providing all the services needed and must include an emphasis on health promotion, as well as disease treatment and cure. Health promotion often focusses on tackling individual behaviours, such as encouraging exercise or good nutrition. However, these activities are insufficient to improve health without additional efforts to address poverty and inequality, which are the underlying drivers of poor health. In this article, we identify common challenges, opportunities and examples for health promotion for people with disabilities, looking at both individual behaviour change as well as addressing the drivers of poor health. We present a case study of a carer support programme for parents of children with Congenital Zika Syndrome in Brazil as an example of a holistic programme for health promotion. This programme operates both through improving skills of caregivers to address the health needs of their child and tackling poverty and exclusion.