How do parents frame their engagement experience in early intervention? A grounded theory study

PURPOSE: Parent and therapist engagement and partnership are critical in early intervention physiotherapy and occupational therapy for infants with cerebral palsy to improve outcomes. The main aim of this study was to understand how parents perceive their engagement experience in early intervention over time. METHODS: Grounded theory methodology was used. Twenty parents of diverse backgrounds participated in 22 interviews (including some repeated longitudinally) to reflect on their engagement experience within the context of early intervention community services provided in the UK NHS. RESULTS: The findings highlight how parents' perspectives of their engagement in EI change according to critical circumstances, including their preceding neonatal trauma, the at-risk CP label, firmer diagnosis of CP and their child's response to intervention. We theorise that this disrupted transition experience to parenthood becomes part of parental framing (or sense-making) of their engagement in EI. Overlapping frames of uncertainty, pursuit and transformation capture and explain nuances in parents' engagement patterns within EI over time. CONCLUSION: This theorising has implications for early intervention therapists in how they engage in the lives of families and partner with parents to support healthier parental transition, wellbeing and subsequent improved infant outcomes

What aspects of health and wellbeing are most important to parent carers of children with disabilities?

Introduction: Parent carers of children with special educational needs or disabilities are at risk of poorer health and wellbeing outcomes because of the distinct and challenging circumstances they face. Evaluations of interventions promoting the health of parent carers should focus on measuring the aspects of health and wellbeing which are most relevant to this group. As part of a programme of research on parent carer‐focused interventions, this study aimed to understand which aspects of health and wellbeing are perceived by parent carers as most meaningful and important. Methods: A qualitative study using semistructured online interviews was conducted. A purposive sample of parent carers was interviewed about relevant health and wellbeing outcomes. Transcripts were analysed thematically. Results: Thirty parent carers were interviewed, 19 of whom had experienced a health‐promoting intervention, either as participants (n = 14) or facilitators (n = 5). Three main themes were identified: ‘self, identity and beliefs’; ‘social connections and support’ and ‘health‐promoting practices and outcomes.’ Each theme encompassed the challenges participants faced, and the changes that helped them overcome these challenges. ‘Self‐identity’ challenges focused on the overwhelming nature of the parental care role and the emotional impact of this. Changes were brought about by developing a positive mindset, increasing confidence, and reconnecting with aspects of their identity which were important to them before they became parent carers. Challenges related to ‘social connections’ reflected parent carers' isolation. Change was brought about through increased peer support and peer interactions. Parent carers experienced challenges in terms of ‘health‐promoting activities’ because they lacked free time and experienced poor physical health. Changes were brought about by engagement in health‐promoting activities of various kinds. Conclusion: Parent carers view health and wellbeing in terms of overcoming the common challenges they face as a group. These challenges reflect the ways in which their physiological and psychological needs are often unmet. Researchers interested in measuring parent carer health and wellbeing should consider the specific challenges this group face, as well as theoretical frameworks which can make sense of these challenges, such as self‐determination theory. Patient or Public Contribution: Our team carries out patient and public involvement (PPI) through a Family Faculty group facilitated by a Family Involvement Co‐ordinator (A. McD.) who is herself a parent carer. A study‐specific PPI working group was established which included members of the Family Faculty. The PPI group advised on various aspects of the research as reported in the paper. The manuscript was co‐authored by the team's Family Involvement Co‐ordinator (A. McD.)

‘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

A Collaborative Research Manifesto! An Early Career Response to Uncertainties

Social researchers have been adapting methods and practices in response to COVID-19. In the wake of these adaptations, but still in the midst of intersecting crises that the pandemic has exacerbated or shifted (e.g. health-social-political-economic), researchers face a future suffused with methodological uncertainties. This paper presents a Collaborative Research Manifesto that responds to this by promoting markers for mean-ingful collaborations in future research. The manifesto was co-written primarily through a series of workshops and events that were designed to identify challenges within, and potential for, collaborative research. Through this exploratory collaborative qualitative process, we highlight what the future of such research could look like and describe methodo-logical commitments that collaborative researchers should embody. The discussion draws on wider methodological literature to articulate the key role that ‘collaborative research’ can offer in uncertain times whilst being sensitive of the limitations of our assertive and radical programme

Negotiating engagement and learning - A qualitative study of parental experience in early intervention for infants with cerebral palsy

BACKGROUND: Cerebral palsy is the most common childhood neurological disability, emerges in infancy, and primarily affects movement. Parental engagement and learning are critical components for successful outcomes within early intervention occupational therapy and physiotherapy for infants (<24 months) with emerging cerebral palsy. However, more research is needed to explore parental experiences and perspectives. This study aimed to explore the parental experience of engagement and learning in early intervention to develop knowledge for practice and research. METHODS: The study used grounded theory within constructivist and pragmatist perspectives. The study had three phases of mixed qualitative design involving in-depth interviews, video case studies, two focus groups and a workshop. Thirty-seven participants (21 parents and 16 therapists) participated in the project. Thirty-six interviews were undertaken, and 16 sessions were videoed within three case studies. RESULTS: The grounded theorising provides an in-depth understanding of engagement and learning in early intervention, as related to parents. Three higher-level insights include: 1. Parents’ traumatic and disrupted transition to parenthood affects parental framing of their engagement and learning throughout early intervention. 2. How parents perceive their emergent knowledge and expertise relative to the therapists’ (and vice versa) implicitly affects the negotiation of roles through micro-interaction. 3. Attention is drawn to tacit collaborative learning strategies within practice and is developed theoretically with novel connections to education theory, dialogical learning praxis. Sociological critique probes social assumptions and relational power by considering sociocultural narratives and the healthcare context relevant to engagement and learning in early intervention. CONCLUSION: This thesis provides novel theoretical contributions through a comprehensive and holistic explanation of the multidimensional nature of engagement and learning in early intervention for infants with cerebral palsy, focusing on parents. The theorising progresses discourse in early intervention literature. Proposed strategies are viable for practice implementation to optimise the learning partnerships between therapists and families. Overall, the theory application theory will benefit parent and infant outcomes

Barriers and facilitators to parent-delivered interventions for children with or infants at risk of cerebral palsy. An integrative review informed by behaviour change theory

Empowering parents to deliver evidenced-based interventions improves outcomes for children with or infants at risk of cerebral palsy (CP), by integrating repetition and contextual learning into daily routines. We aimed to identify the barriers and facilitators to parent-delivered interventions and suggest practice improvements guided by behaviour change models. Eight electronic databases were searched to identify studies presenting parent and therapist perspectives on parent-delivered interventions in CP. Included studies were critically appraised using validated checklists. Barriers and facilitators to parent-delivered interventions were identified and categorised into subcomponents of The Capability Opportunity and Motivation Model of Behaviour (COM-B), the Theoretical Domains Framework (TDF) and the Behaviour Change Wheel to formulate appropriate practice recommendations. Thirty-four studies were identified which mainly used qualitative or randomised control trial designs. Barriers to parent-delivery included insufficient parental knowledge, lack of confidence and time. Facilitators included staff continuity, empowering parents, efficient resource utilisation and flexible delivery. Practice recommendations emphasise realistic goal setting, tailored parental education and enhancing the coaching skills of therapists. Fostering parent-delivered interventions requires addressing knowledge gaps, skill and capacity of parents and therapists. Therapists forming strong alliances with parents and setting collaborative realistic goals are key to successful parent-delivered interventions. Enhancing parents’ skills and knowledge regarding CP interventions can increase their confidence (psychological capability) in actively participating in intervention delivery.Structuring services to accommodate family schedules and providing adequate resources (physical and social opportunity) reduce the burden on families and facilitate their engagement.Providing training and resources to therapists enhances their skills and knowledge (psychological capability) in coaching and educating parents effectively.Emphasizing the value of collaborative goal setting in achieving positive outcomes for the child and acknowledging progress (reflective and automatic motivation) motivates both parents and therapists to actively engage in intervention delivery. Enhancing parents’ skills and knowledge regarding CP interventions can increase their confidence (psychological capability) in actively participating in intervention delivery. Structuring services to accommodate family schedules and providing adequate resources (physical and social opportunity) reduce the burden on families and facilitate their engagement. Providing training and resources to therapists enhances their skills and knowledge (psychological capability) in coaching and educating parents effectively. Emphasizing the value of collaborative goal setting in achieving positive outcomes for the child and acknowledging progress (reflective and automatic motivation) motivates both parents and therapists to actively engage in intervention delivery.</p

‘I Didn’t Know What Was Going to Happen’: Children’s and Young People’s Experiences and Their Involvement Before and After Selective Dorsal Rhizotomy

To explore experiences, expectations, and involvement of children and young people (CYP) in decision-making for selective dorsal rhizotomy (SDR) surgery, post-operative physiotherapy treatment and outcomes. A qualitative study design using one to one interviews. Five CYP (2 girls and 3 boys) participated, and interviews lasted between 45 min and 2 h. Data were analyzed using thematic analysis. Children and young people are reliant on their parents to make decisions and inform them of the SDR process. Experiences of living with cerebral palsy and its management are centered on their routine social, psychological, and physiological challenges. Individual characteristics and attributes of CYP have an impact on how they cope with the rehabilitation burden and adjust to their changing levels of function and participation. Although CYP reported that SDR offers them a greater ‘freedom to choose’ in how they participate in daily life, further consideration is required to meet their psychosocial needs, particularly in preparing for SDR and adjusting afterwards.</p