Perceived needs and difficulties in meal preparation of people living with traumatic brain injury in a chronic phase: Supporting long-term services and interventions.

INTRODUCTION: Traumatic brain injury (TBI) is a chronic medical condition with life-long consequences. Meal preparation is one of the most significant activities impacted by TBI even after more than 10 years post-trauma. However, substantial gaps exist in our understanding of how exactly it is affected. This study examines the perceived needs and difficulties regarding meal preparation in individuals with severe TBI living in the community. This is done in an effort to justify long-term community-based interventions offered to the TBI population with regard to a task involving many safety issues. METHODS: The study used a descriptive qualitative design where five adults (28-50 years old) living with a severe TBI (9-37 years post-injury) were interviewed. Data analysis was completed using an inductive method. RESULTS: Participants living alone were all involved in meal preparation to diverse levels. Only two participants lived with a family member. Six categories of perceived needs were identified, of which two emerged as priorities: (i) Need for recipes to be compatible with cognitive abilities, knowledge and energy level to optimise motivation and (ii) Need to adapt complexity of grocery shopping to cognitive abilities and knowledge. The main difficulty expressed by participants was to manage their motivation to cook when tired, as it tends to diminish and fade when the person is exhausted. CONCLUSION: Many situations were considered difficult for our participants, which calls for adaptation of the tasks and of their environment. Considering these unmet needs in the interventions offered will help individualise follow-up and ultimately optimise the social integration of individuals living with severe TBI.

Content development, accessibility and feasibility of a self-report tool for use in programmes serving youth with cognitive disabilities: The Participatory Experience Survey.

INTRODUCTION: Participation in community-based recreation and leisure activities may afford valuable opportunities to young people with cognitive disabilities (CD) to develop important self-determination skills needed for success in adulthood. To evaluate whether these programmes are achieving their intended impact, it is important to have a tool that captures the perspective of the participants using an accessible method. This article describes the content development and evaluation of accessibility and feasibility of the Participatory Experience Survey (PES). METHOD: Participant observation and focus group sessions were conducted in conjunction with a summer youth programme hosted by a special education advocacy organisation. Photos were used to guide identification of factors influencing both negative and positive experiences. Findings informed question content. Three groups of stakeholders, parents of youth with CD (Group 1), service providers (Group 2), and experts in cognitive disability and/or programme planning (Group 3) reviewed the PES to provide feedback on the relevance and accessibility of the measure. After stakeholder feedback was incorporated, cognitive interviewing was conducted with young people with CD to assess instrument accessibility and appropriateness for use in context. RESULTS: Youth described their participation in three categories: personal, social and environmental. Stakeholder Groups 1 and 2 identified 15 questions as needing revisions. Seven additional questions were added based on suggestions from stakeholder Group 3. Cognitive interviewing led to revision of 13 questions and removal of 16 questions due to issues related to vocabulary, item meaning, response bias, repetitiveness and length. CONCLUSION: The PES has the potential to offer programmes a means to more fully include young people with disabilities in programme evaluations, leading to better-structured, more supportive programmes. Additional validity and feasibility work is needed to confirm these initial findings.

The experiences of social and community participation of people with non-traumatic spinal cord injury.

BACKGROUND/AIM: Incidence of non-traumatic spinal cord injury in Australia is increasing, which will result in more occupational therapists being involved in the rehabilitation of this group in the future. The profile of people with non-traumatic spinal cord injury differs from people with traumatically acquired spinal cord injuries, and their long-term health and well-being outcomes are not known. The aim of this study was to explore the experience of returning to social and community participation following non-traumatic spinal cord injury. METHODS: Qualitative methods were used for this study. Semi-structured interviews were conducted with seventeen people with non-traumatic spinal cord injury who had returned home. Data were analysed inductively utilising the thematic analysis method. RESULTS: The process of returning to social and community participation following non-traumatic spinal cord injury was identified as occurring in three main stages: withdrawal; re-emergence into society; and stability. Each stage consisted of adjustment and adaptation in a number of areas, including: the loss of independence; the experience of being out in public; social networks; participation in productivity roles; and expectations regarding satisfactory social and community participation. Many of the participants had developed or were developing strategies to adapt to the changes experienced in these stages. CONCLUSION: By using a qualitative approach, this study adds to the understanding of the adjustment process experienced by people following non-traumatic spinal cord injury when they return to living in the community. Although findings parallel those of studies conducted with people with TSCI, there are some differences that may warrant alternative approaches from occupational therapists working with people with NTSCI. Such approaches include assisting people with NTSCI to modify their expectations regarding how they will participate in the community, assisting them to find new meaningful roles, and facilitating the development of new social networks to replace lost ones.

Facilitators and barriers to social and community participation following spinal cord injury.

BACKGROUND/AIM: One of the factors known to contribute to a 'good life' following an acquired disability is making connections with others, often achieved through participation in activities outside the home. The majority of outcomes research following SCI has focussed on impairments and activity limitations with less emphasis on participation. This paper reports part of a larger study that explored the experience and meaning of social and community participation following SCI. The research question guiding the part of the study reported in this paper was: What are the facilitators and barriers to social and community participation following acquired SCI? METHODS: Semi-structured interviews were conducted with 17 adults with traumatically acquired spinal cord injury living in the community. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis. RESULTS: Three main themes and 11 subthemes were identified. The main themes were: Resources and environmental accessibility impact social participation; other people influence community engagement; health issues affect social participation. Adequate financial resources and social support (from friends and family, and from peer mentors) were found to assist social participation, while the physical environment, unsupportive social attitudes and mental health issues were identified as barriers to community participation. CONCLUSIONS: This study contributes to the evidence base regarding outcomes following SCI. Enabling engagement in meaningful activities in the community must be at the forefront of occupational therapy intervention, both at an individual client level and through advocacy and policy involvement, to improve the quality of life of people with SCI living in the community.