Heads Together Online Peer Education (HOPE): co-design of a family-led, video-based resource for families affected by paediatric acquired brain injury.

Background Many families of children with acquired brain injuries (ABI) desire opportunities to connect with peers who have shared similar experiences, but such opportunities are often unavailable. Heads Together Online Peer Education (HOPE) is a co-designed online video-based resource that provides information and early support to families following paediatric ABI. This study is part of a larger co-creation project using a community-based participatory research approach to develop and implement HOPE for families impacted by paediatric ABI in Australia. This study aimed to explore parents' and clinicians' perspectives regarding HOPE's usability, acceptability, and future implementation. Methods Parents and clinicians were recruited from a state-wide, interdisciplinary rehabilitation service. Parents were eligible to participate if their child had sustained an ABI within 2 years of recruitment. Participants accessed HOPE, completed the System Usability Scale (SUS), and participated in a semi-structured interview. Transcripts were analysed using inductive content analysis. Results Ten parents and 13 rehabilitation clinicians participated. Average SUS scores were 80.5/100 and 81.73/100, respectively. Participants were satisfied with HOPE's family-centred content and delivery. They expressed having benefited from using HOPE and offered suggestions for its optimisation. Finally, participants reflected on how HOPE could be introduced to and used by families, and its potential usefulness in educating others about paediatric ABI. Conclusions HOPE was developed through a family-led co-design process and aims to provide information and support to families in the early stages following paediatric ABI. This study's findings demonstrate HOPE's usability and acceptability from end-users' perspectives and will guide implementation.

Exploring How Sociocultural Factors Affect the Experience of Completing Neuropsychological Assessments Within Older Greek-Australians.

OBJECTIVE: The field of cultural neuropsychology has grown exponentially over the last three decades. With a limited culturally informed evidence base to guide neuropsychological practice, the acceptability of existing paradigms has been called into question when applied to culturally diverse and educationally disadvantaged groups. This qualitative study aimed to explore the experiences of Greek Australian older adults who underwent a cognitive assessment to better understand potential barriers and facilitators to engagement and to improve neuropsychological assessment outcomes. METHOD: Semi-structured interviews were developed to explore cultural attitudes and contextual factors relating to neuropsychological assessment. Interviews were conducted by Greek-speaking neuropsychologists using a sample of 10 healthy elderly Greek Australians following the completion of a comprehensive neuropsychological assessment. Data were analyzed using a phenomenological design within a critical realist framework. RESULTS: Analysis revealed the emergence of three broad themes: sociocultural factors, experiences within the broader medical system, and the assessment experience. Engagement with cognitive assessment was influenced by several factors, including rapport building, understanding of the assessment, and use of inappropriate tests. Furthermore, level and quality of education, sex differences, language barriers, acculturation, previous experiences of prejudice, anxiety, and a preference for Greek-speaking clinicians were additional factors reported to affect the client experience and validity of assessment outcomes. CONCLUSION: Neuropsychological assessment is, in part, affected by culturally reinforced attitudes. Failing to adjust the relationship between the clinician and client, test environment, style of communication, and the use of culturally inappropriate tests is likely to affect the validity of assessment outcomes.

Clinical perspectives on delivering a Positive Behaviour Support intervention for challenging behaviours following acquired brain injury.

Challenging behaviours are distressing sequelae for people with acquired brain injury (ABI) and their families. Positive Behaviour Support (PBS) is a collaborative approach focussing on improving quality of life for individuals with ABI presenting with challenging behaviours. This qualitative study explored clinicians' experiences of a 12-month intervention (PBS+PLUS) for adults with ABI and their family/carers. Semi-structured interviews were conducted with eight clinicians trained in neuropsychology (n = 5), occupational therapy (n = 3), speech pathology (n = 2), with two clinicians trained in two of these disciplines. Interviews were analysed through reflexive thematic analysis. Three themes were identified: Shifting clinical identity; Working as equals; Adapting to the environment. Participants experienced PBS+PLUS as a difficult approach to learn but one which enhanced overt client communication and comfort with their clinical fallibility. PBS+PLUS involved giving clients equal status in the clinician-client relationship which for some clients and families was challenging. Finally, PBS+PLUS was perceived as problematic to implement in some work settings (e.g., involving high staff turnover). Clinicians' recommendations for future implementation included thorough training and supervision and early setting of client expectations. With increasing interest in PBS to address challenging behaviours after ABI, these findings will guide PBS+PLUS translation for community clinicians.

"I've never been positive I am now": Participant perspectives of a Positive Behaviour Support intervention (PBS + PLUS) for community-living individuals with ABI and their close others.

Challenging behaviours are common following moderate to severe acquired brain injury (ABI). These behaviours cause relationship and community participation difficulties and are a significant source of stress for many individuals with ABI and their close others (COs). A Positive Behaviour Support intervention, PBS + PLUS, was implemented to assist individuals with ABI to collaboratively build meaningful lives and self-regulate their behaviour. This study explored the perspectives of individuals with ABI and COs (family members, friends, and carers) who had completed an individualized 12-month PBS + PLUS intervention. Fifty-two individuals participated in semi-structured interviews, and a thematic analysis of interview transcripts identified the interrelated themes of Openness to Change, Embeddedness, Clinician Connection, and Preparedness for the Future. Participant perceptions of, and engagement with, PBS + PLUS were influenced by an attitude of openness to new ideas and by the intervention itself. Achieving contextual relevance allowed the intervention to become embedded in participants' lives, and the client-clinician relationship was central to participants' positive experiences. While most participants felt better equipped to cope with the future, some experienced difficulties transitioning to post-intervention life. These results suggest PBS + PLUS may assist individuals with ABI to lead meaningful lives and more confidently overcome behavioural challenges, while encouraging supportive and empowered COs.

Coping and wellbeing in families with a child with acquired brain injury compared with families in the community.

PURPOSE: Paediatric acquired brain injury (ABI) negatively impacts parental wellbeing and family functioning. Adaptive coping, that is behaviours promoting emotional wellbeing and addressing distressing problems, may support wellbeing and family functioning. This study compared wellbeing, coping, and family functioning between parents of a child with ABI and parents in the community, and examined coping as a predictor of wellbeing and family functioning. METHODS: Forty parents of a child with ABI and 40 parents in the community participated in this cross-sectional survey using the Personal Wellbeing Index, Coping Scale for Adults Short Form, McMaster Family Assessment Device (General Functioning Subscale). RESULTS: The ABI group had statistically significantly lower wellbeing, t(68.70) = -4.01, p < 0.001, lower adaptive coping, t(73.95) = -3.27, p = 0.002, and poorer family functioning, t(77) = 4.26, p < 0.001. Family composition (single-parent/couple), having a child with ABI, adaptive coping, and non-productive coping predicted 47.7% of the variance in wellbeing, F(5, 70) = 12.75, p < 0.001. Parental education, having a child with ABI, and non-productive coping predicted 35.9% of the variance in family functioning, F(5, 69) = 7.71, p < 0.001. CONCLUSIONS: Adaptive coping may contribute to better family outcomes in paediatric ABI.Implications for rehabilitationPaediatric ABI may have a significant impact on the child with ABI and the family, leading to poorer outcomes for some families.This study suggested that parents of a child with ABI use adaptive coping less than parents in the community but do not differ in the use of non-productive coping.Families need long-term targeted support to meet the challenges paediatric ABI presents and may benefit from interventions which actively seek to change parental coping strategies.

Supporting children and young people with an acquired brain injury (ABI) and their siblings: The experience of a camp for families with a child with an ABI.

Paediatric acquired brain injury (ABI) is associated with long-term negative sequelae, and families must continually adapt to meet the needs of the child with ABI and family members. Condition-specific camps may support families in this process. This study explored the experience of camps for children with ABI and their families from the perspective of children and young people with ABI and their siblings. Semi-structured interviews were conducted with 10 people with ABI (Mage = 23.93, SD = 16.52 years) and 19 siblings of people with ABI (Mage = 14.53, SD = 5.73 years). Using reflexive thematic analysis, the central theme identified was "My safe space," supported by three further themes: "Having fun and relaxing," "Making friends," and "Enjoying choices." Camp was a space where the shared understanding and acceptance of ABI created a sense of safety. This was facilitated by enjoying activities, developing friendships with peers who shared the experience of ABI, and having a sense of control through choice availability. Thus, camps appear to offer opportunities to enjoy typical childhood experiences while restoring a sense of security, increasing understanding of ABI and validating attendees' experiences. Camps may, therefore, offer low-cost interventions to support children with ABI and their families.

The sibling relationship after acquired brain injury (ABI): perspectives of siblings with ABI and uninjured siblings.

Primary Objective This study explored the sibling relationship across the lifespan after acquired brain injury (ABI). Research Design A qualitative approach was used to explore the perspectives of siblings with ABI and uninjured siblings. Methods and Procedures Semi-structured interviews with 19 siblings with ABI and 20 uninjured siblings (aged 6-61 years) were analyzed using reflexive thematic analysis.  Main Outcomes and Results Four themes were identified: Living with ABI; Being normal siblings; Being part of a family; Experiencing social stigma of ABI. ABI was a traumatic event which differentiated siblings but increased understanding helped accommodate its impact. This impact was experienced within perceptions of typical sibling relationships as involving closeness and conflict. The family context shaped relationships, with parents mediating across the lifespan, while siblings' partners and children contributed to adult sibling relationships. Finally, social stigma led to distance but also protectiveness between siblings. Conclusions The sibling relationship was experienced as a continually evolving source of closeness and conflict within the family context. ABI enhanced preexisting dynamics and created new dynamics, shaped by social attitudes toward ABI. Increased understanding of ABI supported closer relationships, highlighting a need for psychoeducational interventions across the lifespan.

The experience of a recreational camp for families with a child or young person with acquired brain injury.

The Heads Together organisation provides a weekend camping programme for children with an acquired brain injury (ABI) and their families. Utilising a qualitative approach, this study explored family experiences of the Heads Together Camp (HTC) from the perspective of parents. Semi-structured interviews were conducted with 11 parents who had attended the camp. Thematic analysis identified six themes: ABI and the family; Apprehension and discomfort; Connections and community; Hope and perspective; Fun, relaxation and respite; and Family functioning. Families experienced initial feelings of apprehension at camp, which attenuated as connections developed between camp attendees. These connections were grounded in shared experiences of ABI and enabled families to become part of an accepting community, feel less alone and share information. The camp environment also facilitated fun and relaxation, provided families with hope and perspective, and led to improvements in family relationships. Overall, recreational camps may mitigate some stressors experienced by families affected by ABI. Camps could be used to support families by providing them with connections, fun and relaxation, a sense of normality and hope for the future. Thus, recreational camps may represent an effective allied support service for this population.

Physical activity: perceptions of people with severe traumatic brain injury living in the community.

PRIMARY OBJECTIVE: Increasing physical activity (PA) among people with severe traumatic brain injury (TBI) represents an important long-term rehabilitation goal. To design effective interventions to promote PA, the factors associated with PA engagement post-TBI need to be understood. RESEARCH DESIGN: A qualitative study design was employed to investigate the factors influencing PA engagement in people with severe TBI living in the community. METHODS AND PROCEDURES: Face-to-face interviews were conducted with eight people with severe TBI three to five years post-injury. A constant comparative method of data collection and analysis was adopted. MAIN OUTCOMES AND RESULTS: Interviews were analysed using thematic analysis. Three themes were identified: continuance of self and PA (perception of self, stage of life, and PA normality), beliefs about PA (knowledge of PA and associated benefits), and purpose of PA engagement (reasons for being physically active). Lifelong PA habits and current life priorities impacted on PA engagement post-TBI and influenced whether TBI-associated impairments were considered as a barrier to PA. CONCLUSION: Among this group of people, PA engagement post-TBI was influenced by perceptions of lifelong PA habits and current life priorities. Interventions to increase PA need to address these perceptions and adapt PA to account for life priorities within the context of TBI-associated impairments.