The use of creative case studies to explore non-verbal and non-ambulant children and young people's well-being.

BACKGROUND AND PURPOSE: The aim of this paper is to describe and critically analyse creative research methods, exploring how these can offer ways to enable non-verbal and non-ambulant children and young people with cerebral palsy, to express their views about their well-being. The context of this research explored their choices for recreational activities, seeking to understand how their level of participation impacted upon their well-being. METHODS: A qualitative comparative case study design was chosen comprising of two interviews, using photographs and diaries to elicit discussion, supported by observations. These observations provided evidence of well-being indicators that were interpreted by the researcher, alongside their parents. Seven participants volunteered, aged nine to sixteen years. Data were analysed utilising Braun and Clark's six stages. Firstly, each case's data sources were coded, themes identified, then across cases comparisons, arriving at three final themes. Triangulation of data sources which made up each case, enhanced the trustworthiness in this study. RESULTS: Observations were key to providing insight into their well-being. Interpretation of this rich data, supported by their parents, revealed that the participants could self-advocate, as shown by their intentional behaviours, to choose their level of participation. DISCUSSION: The researcher's ability to be creative in the data collection methods is original in physiotherapy. It was important to work in partnership with parents, to ensure the correct interpretation of their intentional behaviours from the observations. The diaries and photographs added a unique contribution to knowledge, which enabled the non-verbal participants inclusion, empowering them to express their well-being. STUDY REGISTRATION: This study is registered with the International Study + Clinical Trials Network Register (ISRCTN) Number:42717948. CONTRIBUTION OF PAPER.

A kaleidoscope of well-being to authentically represent the voices of children and young people with complex cerebral palsy: a case study series.

PURPOSE: This paper authentically represents the voices of non-verbal children with cerebral palsy using a case study design. Policy suggests that children should have the right to play and leisure opportunities, however non-verbal children with cerebral palsy have fewer choices. Additionally, children with communication, learning and mobility limitations are usually excluded from research. The aim of this research was to capture the voices of non-verbal children by exploring their well-being impact in terms of their experiences and choices about their level of participation in recreational activities. METHODS: A qualitative case series study included interviews, observations, photographs and diaries. Where possible, the diaries were completed by both caregivers and children. Data were analysed thematically, and the lens of positioning theory applied. RESULTS: Seven children aged nine to sixteen years participated. The findings showed how equipment, people and environments enabled or hindered the children's participation. The children also advocated as champions for their own well-being. Positioning theory was applied across the data and was adapted offering a way to better understand the children's well-being responses. CONCLUSION: The findings demonstrate how these children were able to self-advocate, demonstrating their well-being by their intentional behaviours from their level of participation in a recreational activity.

The voices of non-ambulant and non-verbal children are underrepresented in the literature. This study offers an innovative approach to highlight their voices using visual data. The images project the narrative about their choices for participation in recreational activities. The proposed kaleidoscope of well-being offers a way to demonstrate the fluctuations in their emotional responses from their participation.

Physiotherapists' experiences of early mobilization after stroke thrombolysis in England and Wales: A qualitative study.

INTRODUCTION: Thrombolysis with tissue plasminogen activator is a mainstream treatment for ischemic stroke. Known risks with thrombolysis include intracerebral hemorrhage and bleeding elsewhere in the body. There are no specific recommendations for the timing of commencing mobility rehabilitation after thrombolysis. Research evidence for early mobilization (within 24 hours) after thrombolysis is sparse and little is known about physiotherapy practice in the UK. Purpose: This exploratory study aimed to investigate the experiences, including clinical decision-making of physiotherapists in England and Wales regarding early mobilization after thrombolysis. METHODS: A qualitative study with interpretative paradigm using a phenomenological methodology. Semi-structured interviews were conducted with a purposive sample. Thematic analysis triangulated by participant and researcher review of resultant themes was supported by NVivo software. A reflexive diary was maintained throughout. RESULTS: Data saturation was reached after 14 interviews. All participants reported experience of early mobilization after thrombolysis, with no reported harm or serious incident. Themes included descriptions of practice, perceived benefits and harms, and implementation of risk assessment and management strategies. CONCLUSIONS: Physiotherapists describe a variety of practices with careful implementation of any early mobilization after thrombolysis. Common factors of risk assessment reported by participants could contribute to guideline development.

'Every picture tells a story': Interviews and diaries with children with cerebral palsy about adapted cycling.

AIMS: The study aims to explore the effect of participation in adapted cycling on quality of life for children with cerebral palsy (CP). METHODS: The study used a qualitative approach developing creative mosaic methods using interviews and diaries. This study had two groups of children with CP: those who participated in adapted cycling and a control group who had not yet started. Children with CP aged 2-17 years who were already cycling were invited to take part in two interviews at the beginning and end of a 6-week period and keep a cycling diary during this time. The control group of children with CP aged 2-17 years were asked to keep a diary of physical activities over 6 weeks and to take part in one interview at the end. Welsh, English, Bengali and Arabic were the languages spoken, and some children used communication aids. RESULTS: Results presented here include the first 25 children's interviews and diaries. The emergent themes from the analysis are: learning a new skill, the impact on wider family and friends, social participation and future aspirations. The diaries added an emotional dimension, by illustrations drawn by the children. CONCLUSION: The children who took part in adapted cycling enjoyed this experience and it improved their sense of well-being. Some in the control group went on to participate in adapted cycling. Physiotherapists can carry out creative research to hear the voices of children and young people with CP and incorporate their views and ideas into the development of service model delivery and treatment programmes.

Adapted bikes: what children and young people with cerebral palsy told us about their participation in adapted dynamic cycling.

PURPOSE: Children and young people with Cerebral Palsy have limited opportunities for participation and there has been limited research to explore this concept. Adapted dynamic cycling (ADC) is one activity that can enable them to participate in the community. The aim of this paper is to report the views and experiences of children and young people with CP and their families regarding their participation in ADC. METHODS: This was part of a mixed methods study of which the qualitative findings are reported here. Iterative creative methods were developed which involved semi-structured interviews and diaries about the ADC experience. RESULTS: The themes that emerged were the staff and the environment at the cycling hire project, the facilitators and barriers to ADC, the technical set up of the bike and the impact on the child and family in terms of developments over time, future aspirations, learning cycling skills, social participation and health benefits. CONCLUSIONS: The data showed that children's experiences of ADC were fun and enjoyable. This fun exercise should be incorporated into a physiotherapy programme as part of the child or young person with CP's rehabilitation. Policy makers and parents may find the information useful to increase the child's participation.

A fight for the right to life.

This paper describes the experience of 'Pamela*, mother of a child with spina bifida, diagnosed prenatally. It was disclosed during a research project exploring 'Family Centred Care' (FCC) with disabled children, and a very challenging ethical dilemma arose. This mother felt unsupported in her decision to go ahead with having her baby with spina bifida; this was in contrast to the support she received for her disabled child, once born. The discussion will focus around the challenge of supporting parents in decision making in midwifery and health care practice.

Disabled children's services: how do we measure family-centred care?

Family-centred care has been defined as a philosophy of care where families are supported in their decision-making roles in an equal partnership with professionals. The research question was 'How ''family centred'' do staff and parents perceive their work with disabled children and young people?' A questionnaire, the Measure of Processes of Care for Service Providers (MPOC-SP), was used as a basis for designing focus groups and interview questions. Staff and parents took part in these and data were analysed using an editing approach. Staff described how they adapted their service to meet parental needs and empowered and enabled parents despite receiving no specific training in FCC. Parents spoke highly of the staff input and gave varied descriptions of the attributes they most valued, including feeling supported and being in an equal partnership. Investigation of the influence of focused FCC training on parental experiences is warranted.

The effects of strabismus on motor development.

INTRODUCTION: Blindness in young children has been shown to lead to significant motor delay. Few studies to date have evaluated the effects of strabismus and its treatment on motor development. METHODS: We evaluated nine children prior to and post eye alignment via strabismus surgery to determine the effect of this treatment on motor development. Developmental milestones using the Bayley and modified Denver developmental scale were recorded prior to and post surgery. RESULTS: It was found that in this study sample there was developmental advancement within days of surgery in every case. CONCLUSION: We feel that eye alignment at an early age in strabismic children is an important factor contributing to age appropriate motor development as measured by developmental milestones. A method for a larger scale objective study to better define the effect of strabismus surgery on motor development is currently being planned.