'There was nothing, just absolute darkness': Understanding the needs of those caring for children and young people with complex neurodisability in a diverse UK context: A qualitative exploration in the ENCOMPASS study.

BACKGROUND: Children and young people (CYP) with complex neurodisability experience multiple physical, communication, educational and social challenges, which require complex packages of multidisciplinary care. Part of the holistic care required includes supporting the families and parents/caregivers. The aim of the wider study was to introduce a new programme ('Ubuntu') to parents/caregivers and healthcare professionals (HCPs) in order to test the feasibility and acceptability of the concept and content, with the goal of potential adaptation for the UK in mind. Data collection and analysis uncovered rich data on caregiving journeys, navigation of health services, and perceived service gaps. This paper focuses solely on these topics. Further papers will report on the feasibility and adaptation data. METHODS: Two rounds of semi-structured interviews were conducted with 12 caregivers of CYP with complex neurodisability and six HCPs from a variety of disciplines, recruited from a community child health service in London Borough of Newham, UK in 2020. The interviews included open-ended questions to explore caregiving journeys, experiences of navigating health services and perceived service gaps. Transcripts were analysed using a data-driven inductive thematic analysis. RESULTS: Three themes were identified that related to the aim of understanding caregivers' experiences and unmet needs relating to current service provision. These were (1) Caregiver Mental Health, (2) The Information Gap and (3) The Need for Holistic Support. Mental health difficulties were reported, particularly around the period of diagnosis. Priority needs included the provision of clear information about the diagnosis and services offered, opportunities to forge peer support networks and for services across the community to collaborate. CONCLUSIONS: The delivery of health services for CYP with neurodisability should encompass the broad needs of the family as well as meeting the clinical needs of the CYP.

Play-based groups for children with cerebral palsy and their parents: A qualitative interview study about the impact on mothers' well-being.

BACKGROUND: Cerebral palsy (CP) is the most common childhood physical disability in developed countries. Parents of children with CP experience difficulties that can result in reduced well-being. Health professionals supporting children with CP have been encouraged to focus on parental well-being as this forms part of the child's essential environment. There is a lack of evidence about interventions that holistically support the whole family by providing therapeutic input for the child and support for parents. This study aimed to explore parents' experiences of play-based groups for children with CP and their parents, with a focus on the groups' impact on parents' well-being. METHODS: Parents of children with CP who had attended play-based groups in the year prior were recruited for this qualitative study. Semi-structured interviews were conducted, audio-recorded and transcribed verbatim. Participants' demographic characteristics were collected as contextual information. Data were analysed using an inductive thematic approach. RESULTS: Ten mothers were interviewed. Overall, mothers had positive experiences of the groups and perceived them as an important influence on their well-being. Four themes described mothers' experiences of the groups and the subsequent impact on their well-being: (1) practical support, (2) connecting with others, (3) transitioning journeys and (4) different motivators, different experiences. Numerous factors influenced mothers' experiences of attending the groups and the subsequent impact on their well-being. This included mothers' individual experiences of having a child with CP. CONCLUSIONS: Interventions combining practical and social support for the whole family can have a positive impact on the well-being of mothers of children with CP. Care should be taken to provide individualised support for each family. There is no 'one-size-fits-all' approach, and a package of care can provide multiple services that meet the varying needs of mothers and their children with CP.

Understanding the facilitators and barriers of stroke survivors' adherence to recovery-oriented self-practice: a thematic synthesis.

PURPOSE: Stroke survivors receive considerable rehabilitation efforts as inpatients, but one-on-one therapy decreases after discharge. The gap between the amount of required therapy and the lack of its availability in this phase of care may be partly overcome by self-practice. However, patient's adherence to prescribed programs is often low. While single studies have examined factors affecting adherence in this specific case, they have not been reviewed and synthesised previously. METHODS: A thematic synthesis of qualitative studies explored factors affecting stroke survivors' adherence to prescribed, recovery-oriented self-practice. Five databases were systematically searched for references: Medline, Psycinfo, CINAHL, Embase, and ASSIA. Quality assessment was undertaken using the CASP tool. RESULTS: From 1308 references, 68 potential papers were read in full, and 12 were included in the review. An overarching theme was identified as: "Tailoring and personalization rather than standardization." It was informed by the following three analytical themes: "The meaning of 'self' in self-practice," "Identifying self-practice as a team effort," and "Self-practice that is grounded in one's reality." CONCLUSION: To have a positive effect on adherence to self-practice, clinicians are advised to spend time learning about each individual's life circumstances, so they can tailor proposed exercise programs to patients' personal situations, preferences, and needs.IMPLICATIONS FOR REHABILITATIONThe topic of patient's adherence to self-practice of prescribed exercise is a common concern, often voiced by frustrated rehabilitation health professionals. Bridging the gap between the patient's needs for post-discharge intensive therapy and the inability of healthcare systems to provide it could be filled partly by self-practice.Adherence to self-practice has become even more essential since the COVID 19 pandemic and the decrease in face-to-face delivery of rehabilitation due to social distancing requirements.Adherence to exercise is a broad topic. Reasons for poor adherence differ between patient populations and the exercises they are prescribed. This study focuses on post-discharge stroke survivors' adherence to recovery targeted exercise that could be described as repetitive and less physically demanding movements and functions.Reviewed studies were qualitative and usually included a relatively small number of participants within a specific context. Using thematic synthesis, we combined these small pieces of the puzzle into a larger picture, to produce recommendations that could be drawn on by clinicians to improve self-practice adherence.