Narrative inquiry : useful techniques for understanding the stories of people with cerebral palsy

Objective: Narrative inquiry methods are based on the premise that through listening to people’s stories we can make sense of their experiences and understand how they construct meaning in their lives within a broader social context. Narrative inquiry is seen to be particularly relevant for understanding the stories of people whose experiences may differ from normative experiences, including people with disabilities. Wide variation exists in both the data collection and analysis methods utilised within narrative inquiries. This paper details one example of narrative inquiry methods utilised successfully in an exploration of the stories of emerging adults with cerebral palsy (CP). Design: A qualitative, narrative inquiry guided, but not constrained, by the work of Donald Polkinghorne. Method: Multiple in-depth unstructured interviews were conducted with 18 volunteers with CP aged 18–25 to explore their experience of emerging adulthood. While the majority of interviews used a traditional face to face format, email and telephone interviews were also successfully conducted. These alternative formats facilitated access to the study by people unable to participate in face to face interviews for reasons including speech impairment and geographic distance. A number of techniques were usefully employed during interviews, including setting the narrative terrain, funnelling, recursive questioning, and drawing on background knowledge. Data was analysed using both narrative analysis and paradigmatic analysis of narratives. Paradigmatic analysis included both inductive methods, that is identifying key concepts directly from the data, and deductive methods, relating to data coded according to key domains from the theoretical frameworks guiding the study; the theory of emerging adulthood and the International Classification of Functioning, Disability and Health. Results: Narrative analysis resulted in the construction of an individual story for each participant. Paradigmatic analysis of narratives enabled the identification of a typology of four different types of stories of emerging adulthood and identification of common and contrasting themes and concepts appearing across stories. Both types of analysis offered useful, and different, insights into the stories and experiences of emerging adults with CP. Conclusion: A range of narrative inquiry techniques can be successfully used to engage effectively with people with cerebral palsy and to reveal their experiences and stories

Experiences of emerging adults with cerebral palsy in tertiary education and employment : lessons from research and the field

Objective: Successful participation in tertiary education and employment is a key developmental task for young people, and people with cerebral palsy (CP) aspire to success in the same way as their peers without disability. Participation in tertiary education and employment correlates to positive outcomes in a range of areas, including quality of life, social inclusion, and financial status. Unfortunately emerging adults with CP and other disabilities continue to experience less success in these areas than their peers. This is despite over 20 years of legislation promoting equal rights and access to education and employment in Australia and despite a range of policies, supports and services being in place to promote and facilitate participation. This paper details enablers and challenges to participation of people with CP in tertiary education and employment, and makes recommendations for policy and service delivery. Design: A focused analysis of an existing qualitative data set, along with insights from 5 years experience delivering the National Disability Coordination Officer Program, an Australian Government Initiative working to improve linkages within the education, training and employment sectors and address systemic barriers to participation. Method: Perspectives and experiences of emerging adults with CP around tertiary education and employment were prominent within data collected for a large narrative inquiry into the stories of emerging adults with CP. Participants were 18 volunteers with cerebral palsy aged 18–25 years who lived in New South Wales (mean age 21yr; 11 male, 7 female; 11 metropolitan, 5 regional, 2 rural). Severity (GMFCS: I=2; II=5; III=7; IV=1; V=3) and type of CP varied. Multiple in-depth unstructured interviews were conducted with each person to explore their experience of emerging adulthood. During this focused analysis, open coding was used to identify key themes in the data relating to experiences in tertiary education and employment. Results: Emerging adults with CP report a range of environmental barriers to their effective participation in tertiary education and employment. These include challenges navigating systems, negative attitudes from educators and potential employers, and difficulties accessing reasonable adjustments, technology, education and employment settings. These issues are compounded by gaps in coordination within and between sectors, and by poor understanding of people with disability and stakeholders of both the right to access support and what support is available. Conclusion: More work is required to address systemic and environmental barriers to participation of people with disability in tertiary education and employment and foster improved outcomes

Community-based rehabilitation in Fiji : evaluation of the competency, assessment, and local solutions (CAL) programme

Background: Approximately 12 000 people with a disability live in the developing country of Fiji, yet only 0.2% of those requiring services have access to them. The competency based training, assessment and consultancy, and local/community participation activities (CAL) programme is a 3 year programme aiming to address the needs of children with disabilities in Fiji. It supports immediate health solutions, skill development for community rehabilitation assistants (CRAs), health workers, parents and teachers, and culminating in sustainability. Objectives: To evaluate the first 2 years of the CAL programme regarding efficiency, quality and effectiveness and to make recommendations for ongoing sustainability and improved implementation. Design: A multiple stakeholder case study design was utilised, allowing evaluation of the programme in its real world setting. Participants/Setting: Stakeholders including families, CRAs, teachers, health workers and representatives of external stakeholder organisations. Materials/Methods: A multi-faceted mixed method data collection approach was utilised. Quantitative and qualitative data was collected using semi-structured questionnaires (n = 53), interviews (n = 4), focus groups (n = 3 with 41 participants), record reviews and field observations. Quantitative data was collated with descriptive statistics and qualitative data transcribed and thematically coded. Results: Efficiency – CRAs (13 i.e. 100% completion), teachers and health care workers have been trained through the programme and are now implementing assessments, detailed individualised rehabilitation goals and plans, and interventions. Quality – High program satisfaction rates were reported by all stakeholders (75% to 94%), with identified program strengths including knowledge gain, service provision, sustainability, community approach and expertise of facilitators. Contextual factors identified that may influence ongoing success of the programme included policy, legislative, political, access and financial issues. Parents report feeling more confident and informed. Stakeholders commonly recommended that further outcome improvement could be achieved by training more people. Effectiveness – 77% of participants felt that community perception of disability had changed for the better as a result of the programme. 100% of CRAs reported skill transfer to children with disabilities and their families, and 100%of children assessed are now provided with a detailed action plan including functional goals. Participants reported greater confidence, communication skills, assessment skills and skills in developing and actioning appropriate plans for their clients. Conclusions/Clinical Implications: The CAL programme is producing positive outcomes. Recommendations include: continuation and extension of the programme; increasing number of CRAs trained; ongoing communication with stakeholders to raise awareness of the programme; inclusion of outcome measures to evaluate effectiveness; and a focus during the third year on future sustainability of the programme

Stories of 18- to 25-year-olds with cerebral palsy : four different plans for emerging adulthood

Objective: Emerging adulthood has been identified as a unique developmental stage within developed countries. Generally associated with ages 18–25, emerging adulthood is seen as a time of: identity exploration; instability; self focus; a sense of feeling in-between; and possibilities. It is a time of profound change when people develop, review and update their plan for the future. To date there has been a paucity of research investigating the experiences of emerging adults with cerebral palsy (CP). This study aimed to understand the stories of emerging adults with CP from their own perspective. It also explored which components of the International Classification of Functioning, Disability and Health (ICF) are emphasised within their stories and the relevance of the five features of emerging adulthood to the experience of 18–25 year olds with CP

Emerging adults with cerebral palsy : their stories from their perspective

Background: Emerging adulthood has been identified as a unique developmental stage within developed countries. Generally associated with ages 18–25, emerging adulthood is seen as a time of identity exploration, instability, self focus, a sense of feeling in-between, and possibilities. To date there has been little research investigating the experience of emerging adulthood for people with cerebral palsy (CP). It is suggested they may experience challenges in accessing education and employment, social activities, relationships, healthcare and other services. Objectives: This study aimed to investigate the experience of emerging adulthood for young people with CP from their own perspective. Design: A qualitative, narrative inquiry. Participants/Setting: The participants were 18 volunteers with CP aged 18–25 years who lived in New SouthWales, Australia (mean age 21 years; 11 male, seven female; 11 metropolitan, five regional, two rural). Severity (GMFCS: I = 2; II = 5; III = 7; IV = 1; V = 3) and type of cerebral palsy varied. Materials/Methods: Multiple in-depth unstructured interviews were conducted with each participant using face-to-face (n = 43) and/or email (n = 42) interviews to explore their experience of emerging adulthood. Interviews continued until each participant felt they had ‘told their story’. The narrative data was analysed using paradigmatic analysis. Results: A number of archetypal narratives were revealed. Each reflected the five features of the theory of emerging adulthood. Identity exploration, instability, self focus, feeling in-between and possibilities were apparent in all narratives, but to varying extents. The stories of emerging adults with CP were moderated by factors best described through the International Classification of Functioning, Disability and Health (ICF). Narratives were dominated by the environmental domains of the ICF, in particular societal attitudes, access, support, services and systems. Activity and participation domains and personal factors also featured in their stories. Body functions and structures were rarely mentioned. Conclusions/Clinical Implications: Archetypal narratives of young people with cerebral palsy feature the five attributes of emerging adulthood, as experienced by their peers without disabilities. However their experience is affected by factors that can be described through the lens of the ICF, most notably environmental factors. The theories of emerging adulthood and the ICF can thus provide a framework for considering issues that may be experienced by young people with CP. This study reinforces the influence of environmental factors on experience and emphasises that emerging adults with CP continue to face many societal barriers to full participation and inclusion

''Just like you'', a disability awareness programme for children : pilot study findings

Background: The participation of people with disabilities is impacted upon by environmental and contextual factors including attitudes, as well as their intrinsic disability. Disability awareness programmes aim to increase knowledge and acceptance of disability, thereby improving attitudes towards disability and ultimately facilitating participation. Objectives: To investigate the attitudes of 9–11 year old Australian school children towards disability and evaluate a new disability awareness programme. Design: For this pilot study a mixed-method approach was used including quantitative (pre-post questionnaire evaluation) and qualitative (focus group) methods. Participants/Setting: 147 primary school students, aged 9– 11 years, participated at three Sydney schools. This pilot study used convenience sampling of schools where working relationships already existed. Materials/Methods: The ‘Just Like You’ programme utilises a cognitive-behavioural approach with the aim of increasing knowledge, awareness and acceptance of disability. It involves two speakers, one with a disability, presenting two 90-minute sessions approximately two weeks apart within class time. Sessions include information, discussions, written activities, demonstrations, disability simulation activities and extended time with a person with a disability. A questionnaire designed specifically for this research was administered before and after the programme, evaluating the programme’s effect on knowledge, awareness and acceptance of disability. Teachers also completed an evaluation questionnaire. Focus groups were conducted with a sample of students (16%) to gain an understanding of their attitudes towards disability and perceptions of the programme. Results: Intervention effects: Quantitative questionnaire results demonstrated high knowledge and positive attitudes towards disability even at baseline. Following intervention, a statistically significant improvement (p < 0.001) was shown with a 10% increase in scores. Focus group responses further confirmed improved knowledge and perceptions of disability. Program evaluation: Questionnaire results indicate that the majority of participants liked the programme. Participants identified the most important thing they learned as ‘people with disabilities are just like us’ (25%), ‘how to treat people with a disability’ (22%), and ‘that people with disabilities can do lots of things’ (10%). Teachers’ responses to the programme consistently scored within the ‘good-excellent’ range on all items (relevance, fit with school curricula, student engagement, content and participation). Focus group participants reported almost exclusively positive feedback regarding the programme, and in particular emphasised the positive impact of the facilitator with a disability. Conclusions/Clinical Implications: The disability awareness program for upper primary school children increased knowledge, awareness and perceptions of disability in the shortterm. Phase 2 of this research will explore the influence of improved disability awareness on behaviour change and the participation of people with disabilities