Participatory methods to explore the ‘Lifeworld’ and views of children and young people with cerebral palsy about ‘Participation’ in recreational activities

Participation in health has been based upon the World Health Organisation’s International Classification of Functioning as ‘involvement in life situations’. However, in the social science literature, participation is based upon children’s rights being defined as the ‘Act of doing and being involved’ where both voice and agency play a role in influencing change. King (2013) suggests the way forward should explore these social aspects of participation including their ‘lived experiences’. The purpose of this study is to explore the Lifeworld and views of children and youth with Cerebral Palsy (CP), about what participation in recreational activities means to them in terms of managing their own health and wellbeing. Qualitative methods: Participatory methods with 2 pilot case studies were developed using puppetry and ‘sandboxing’ (Mannay, 2015). 2 Interviews before and after a diary of recreational activities was completed over 12 weeks. Data were analysed using an interpretative phenomenological approach. Themes which emerged included enriched perspectives of the emotional impact of living with CP and metaphors to enhance our understanding of their health and wellbeing. More data is needed to fully appreciate the Lifeworld of a child or young person with CP, participating in recreational activities, before healthcare practice can be influenced

A kaleidoscope of well-being to represent the participation in recreational activities of children and young people with complex cerebral palsy.

A literature review highlighted a gap in knowledge for non-verbal disabled children with limited mobility who have less choices for recreational activities than their peers. Very little is known about their perceptions of their own well-being. The research question explored how children and young people with cerebral palsy and their parents viewed, experienced, and chose their level of participation in recreational activities, to benefit their well-being. This was explored by observing their experiences, intentional behaviours and listening to their parent’s views. Positioning theory was applied, which includes a triad of their position, social forces, and their storylines. The opportunity to position the disabled child or young person at a recreational activity was a key to their storylines. A comparative case study design was developed using visual methods. The storylines of the participants were socially constructed from the evidence of the social forces at play, at the activities where they were positioned. There were two groups, a Participatory Group (N=4) and a Limited Participatory Group (N=3). The participants were aged nine to sixteen years, supported by their parents in the data collection. Each case included two interviews at the beginning and end of twelve weeks, during which time the parents also kept a diary. Observations were also carried out at one of their usual recreational activities during this time. Photographs were taken by the parent or the researcher, which were used to elicit discussion in the second interview. Seven cases were analysed utilising an interpretative approach, using Braun and Clark’s six stages of thematic analysis. First the Participatory Group were analysed, then the Limited Participatory Group, followed by the across case analysis. Three overall themes were identified from the findings 1. Participation enhancers 2. Champions for disabled children and young people's well-being 3.Hindrances to participation. Positioning theory has been further adapted to include the non-verbal children’s storylines, represented by a ‘Kaleidoscope of Well-being’. This suggests that well-being can fluctuate in different environments, influenced by the social forces of advocates who promoted their needs, with specialist equipment. Participants also showed they could choose not to participate, to determine their own storylines, by self-advocating their wishes. Policy makers and designers should consider how to increase the choices of recreational activities for disabled children. Practitioners should consider how they include participation as an outcome from their interventions. Further research could explore how professionals listen to disabled children and young people to promote their self-advocacy

Children and youth with cerebral palsy's(GMFCS III-V)voices about the well-being effects from their level of participation in recreational activities

Children and youth with cerebral palsy with mobility, communication and learning challenges are underrepresented in literature. The research question explored how they and their parents viewed, experienced, and chose their level of participation in recreational activities, to benefit their well-being. The two aims were to explore the views, experiences and choices for children and youth's level of participation in recreational activities and their perceptions of the effect of this upon their well-being. A qualitative approach was developed using an exploratory comparative case study design using visual methods, seeking to position their voices centrally to the enquiry. The participants were aged nine to sixteen years. Each case included two interviews at the beginning and end of twelve weeks, during which time the parents also kept a hand-written diary. Observations were also carried out during this time of their intentional behaviours. Seven cases were analysed using Braun and Clark’s six stages of thematic analysis. Three themes were identified 1. Participation Enhancers; 2. Champions for disabled children and young people's well-being, including self-advocacy; 3. Hindrances to participation. Positioning theory was applied, which included a triad of their position, social forces, and their own stories, without spoken language. Their storylines were socially constructed from the evidence of the social forces at play, at the recreational activities where they were positioned. Positioning theory has been further adapted to include the children’s storylines, represented by a ‘Kaleidoscope of Well-being’. This suggests that well-being can fluctuate in different environments, influenced by the social forces of advocates who promoted their needs, with specialist equipment. Participants also showed they could self-advocate, to determine their own storylines, by choosing not to participate as shown by their intentional behaviours. Indications of well-being remain subjective, further work is being carried out to establish the well-being domains and develop a reliable well-being measure

The experiences of veterans with mental health problems participating in an occupational therapy and resilience workshop intervention: an exploratory study

Introduction Occupational therapy has long had a strong presence in military mental healthcare. Today’s veterans have complex needs and can face challenges reintegrating into civilian life. This exploratory study investigated whether veterans receiving mental health treatment who participated in a bespoke occupational therapy and resilience workshop intervention improved their perceived participation in everyday life. Method An interpretivist hermeneutic phenomenological approach was used to explore veterans’ perspectives. Ten participants took part in two semistructured focus groups. Thematic analysis was used to identify and analyse patterns within the data. Findings Most participants developed occupational goals and started to make lifestyle changes; participants developed an appreciation of the value of occupation; participants developed insight into their recovery journeys; and value was placed on the ‘healing power’ of the group. Conclusion This exploratory study provides preliminary evidence to suggest occupational therapy was influential in helping participants understand the impact of occupation on health and start making lifestyle changes. Participants also reflected on their recovery journeys. The benefits of doing this within a group environment appear to have been particularly therapeutic. Original occupational therapy research in this specialism is sparse. This novel study provides insight that can further discussion and enhance understanding about what the profession can offer this client group