Michelle Bellon

The “E” word: Epilepsy and perceptions of unfair treatment from the 2010 Australian Epilepsy Longitudinal Survey

AIM The aim of the current study was to examine self-report data on perceptions of unfair treatment due to epilepsy. METHOD We analyzed data from the 2010 Australian Epilepsy Longitudinal Survey, distributed to 621 registrants on the Australian Epilepsy Research Register. A total of 343 responses were received (55% response rate), providing insight into experiences of life with epilepsy in Australia. Responses relating to perceptions of unfair treatment in areas of employment, education and community participation as a result of epilepsy are reported in this article. RESULTS Forty-eight percent of respondents reported perceptions of unfair treatment as a result of their epilepsy, with most providing details of their experiences. Discrimination in the workplace remains of key concern, with 47% citing examples of unfair treatment in this setting. CONCLUSIONS In spite of Australian anti-discrimination laws, findings indicate that full-time employment rates for people with epilepsy are lower than previously reported, with further mechanisms for support required to improve education and reduce experiences of stigma.

The effect of context on communication: a study of the language and communication skills of adults with acquired brain injury.

Primary objective: To examine the effects of changing contexts on language and communication skills of adults with acquired brain injury. Research design: Repeated measures design. Methods: Four adults with brain injury were observed in four contexts with pragmatic language and communication behaviours recorded. Contexts included baseline, two intervention phases (a 3-day camp and post-camp period) and 2-month follow-up. Results: Participants demonstrated improvements in constructive language production during intervention phases. Results indicate structure, cueing and positive experiences created language which was observed to overcome the influence of organic damage. However, at follow-up, the language and communication levels returned to baseline levels. Conclusion: Clinically, these results have implications for the development of sustained interventions for language and communication skills in community-based rehabilitation programmes. Creating supporting contexts may serve as an effective means of improving language and communication behaviours, while also facilitating optimum community inclusion.

Seizure-related injuries and hospitalizations: self-report data from the 2010 Australian Epilepsy Longitudinal Survey.

AIM To examine self-report data on seizure-related injuries and hospitalizations. METHOD We analyzed data from the 2010 Australian Epilepsy Longitudinal Survey, distributed to registrants on the Australian Epilepsy Research Register. 343 responses were received (55% response rate), providing insight into experiences of living with seizures. This article examines self-report data on injuries related to seizures and hospitalizations. RESULTS 64% of those reporting injuries required hospital treatment. Respondents with seizure-related injuries had significantly earlier seizure onset, with risk of injury related to myoclonic and atonic seizures and currently taking 3 or more AEDs. Soft tissue injuries were the most frequently reported (85%), with 27% indicating facial injuries. CONCLUSIONS The high rate of hospitalizations largely for soft tissue injuries suggests that access to more appropriate care was not available. Further research into care-seeking behavior by Australians suffering injury following seizure is required. Additionally, awareness of injury risks is important for appropriate self-management of epilepsy.

Parents’ experiences of their child’s return to school following acquired brain injury (ABI): A systematic review of qualitative studies

Abstract Objective: To examine parents’ experiences during their child’s return to school following ABI. Research design: Systematic literature review. Methods: Six electronic databases relevant to the fields of brain injury and education were searched between 1980–2015. In addition, two qualitative journals and references from articles were hand-searched for further literature. Search results were screened independently by two reviewers for relevance. Studies meeting the inclusion criteria were analysed using the McMasters Critical Review Form for Qualitative Studies. Results: Two hundred and sixteen articles were screened after duplicates had been removed and 11 were assessed for relevance, resulting in six full text articles for review. The quality of studies was mixed, with only two presenting a high number of quality indicators for qualitative research. Ten themes were identified and grouped into three clusters: influencing factors (environment, school, parent and child factors); features of interaction (information, communication and collaboration); and quality levels of outcome (conflict, coping and construction of new roles and identities). Conclusions: Parents’ experiences are influenced by the quality of information, communication and collaboration between the school, health professionals and the family. Further well designed qualitative studies examining parents’ experiences and support needs are required.

Epilepsy-related deaths: an Australian survey of the experiences and needs of people bereaved by epilepsy

PURPOSE This study explores the experiences and needs of bereaved family and friends following an epilepsy-related death in Australia. METHOD An online survey was used to collect demographic details of the person with epilepsy, epilepsy status, time since the death, satisfaction with service providers at the time of death, follow-up support, perceptions on how well the death was explained, and gaps in support or services. RESULTS The survey was completed by 101 respondents describing 90 deceased individuals. Mean age at death was 32.1 years, with causes of death including SUDEP, epilepsy, drowning, cardiac arrest, asphyxiation, and motor vehicle accidents. Over half of the respondents indicated that they did not know, prior to the death, people could die of epilepsy. In addition, 38% indicated the death had not been adequately explained to them. Comments revealed services and supports which should be available following a death, and recommendations for existing epilepsy support services which might help to prevent future deaths. CONCLUSION Findings highlight the need to improve community understanding and support for those affected by epilepsy and to promote informed risk assessment and communication amongst patients, families and health professionals. People bereaved by epilepsy require both immediate and long-term epilepsy-specific information and support from professionals, informal communities and peer supporters.

Family involvement in behaviour management following acquired brain injury (ABI) in community settings: A systematic review

Abstract Objectives: To examine family involvement in the management of behavioural problems following ABI in the community. Research design: Systematic literature review. Methods: Six electronic databases relevant to the field of brain injury were searched between 1980–2013. Citation indexes were used and references from articles hand searched for further literature. Studies that met the broad inclusion criteria were screened for relevance and articles selected for full-text review independently considered by two reviewers. Those found to be relevant were analysed using PEDro and McMasters critical appraisal tools. Results: Three hundred and three studies were identified after duplicates were removed and 56 were assessed for relevance, yielding 10 studies for review. Although the majority of studies were weak in design, five revealed significant findings supportive of family involvement in the management of behavioural problems following ABI, especially where interventions consisted of both educational components and individualized behavioural plans. Findings revealed no significant changes in family burden following behavioural interventions. Conclusions: There is limited research and lack of high evidence studies evaluating family involvement in behaviour management following ABI; therefore, no conclusions can be drawn regarding its efficacy. More research is needed, with larger sample sizes and more rigorous design, including proper comparison groups.

Exploring the impact of an arts-based, day options program for young adults with intellectual disabilities

This study explored the perceived impact of participation in Tutti Arts, an art- and music-based, day options program, on the social and emotional wellbeing of young adults with intellectual disabilities. This exploratory research gathered qualitative data from semi-guided interviews and field notes of observations during interviews. Data were analysed using thematic analysis, applying a constant comparative process to develop themes as the data were interpreted. Participants were five young adults with intellectual disabilities, aged between 21 and 27 years, who attended Tutti Arts. In addition to data gathered from these participants, the perceptions of five family members and two support workers were also obtained by interviews, and included in the analysis. Young adults with intellectual disabilities who participated in the Tutti programs experienced a range of social and artistic activities that had a positive impact on their social and emotional wellbeing. Participants reported enjoying performing p...

Family-directed approach to brain injury (FAB) model: a preliminary framework to guide family-directed intervention for individuals with brain injury

Abstract Purpose: This article proposes a theoretical framework to help professionals include family as active members in brain injury rehabilitation. A trend towards greater family involvement has lead to the development of family-collaboration models. However, current models appear to focus on information sharing rather than increasing the capability of family members. This article introduces a family-directed approach to brain injury model, which provides a theoretical framework for supporting family as facilitators of change. Methods: Family-collaboration models and literature regarding family experiences following brain injury and support needs are reviewed to identify the driving forces behind family engagement in rehabilitation, including effective professional–family relationships, and important factors in the delivery of education underpinned by evidence-based practices. Results: The family-directed approach to brain injury model is based on principles of hope, family expertise, education/skill building, and family-directed intervention. Conclusions: The family-directed approach to brain injury model provides a theoretical framework for educating and training family members as facilitators in the management process: promoting competence rather than dependency on service systems. Guiding recommendations encourage professionals to reflect on the importance of their therapeutic relationships and their capacity to positively impact rehabilitation outcomes beyond the technical aspects of health care and treatment. Implications for Rehabilitation Training family members as facilitators in the rehabilitation process is suggested to reduce dependency on the service system, address families’ unmet support needs, and to optimize rehabilitation outcomes for individuals with brain injury. The family-directed approach to brain injury model is proposed to guide the increased involvement of family as active members in the rehabilitation team and to define potential active ingredients in this process.

Leisure as a human right: an exploration of people with disabilities’ perceptions of leisure, arts and recreation participation through Australian Community Access Services

ABSTRACT Community Access Services (CAS) are defined as ‘Services designed to provide opportunities for people with disability to gain and use their abilities to enjoy their full potential for social independence’ [Australian Institute of Health and Welfare. 2015. Disability Services National Minimum Data Set Collection: Data Transmission and Technical Guide. Canberra: AIHW]. A notable absence of international research regarding leisure, arts and recreation through CAS exists. This study explores perceptions of people with disabilities on their participation in leisure, arts and recreation through Australian CAS. A constructivist grounded theory approach was used involving: memoing, observations, focus groups, interviews and questionnaires from people with disabilities and their families (n = 114); and a critical discourse analysis of texts (n = 42). Results revealed seven major themes including: transition to leisure, arts and recreation; individualized services; local accessible services; positive organizational culture; community inclusion; innovation and co-production. These findings may contribute to the transformation of CAS as people with disabilities actively engage as equal partners within leisure, arts and recreation as a human right.

A critical discourse analysis of the voices of people with intellectual and developmental disabilities within Australian community access service policies and practice: my voice, my policy

ABSTRACTCommunity access services are designed for people with disabilities to gain and use their abilities to enjoy their full potential for social independence. This research explored the extent to which the voices of people with intellectual and developmental disabilities and their families and informal primary carers have contributed to Australian community access services policy in the twenty-first century. The research aimed to explore whether the voices of people with intellectual and developmental disabilities and their families are present in Australian community access services policy; if community access services policies influence practice with regard to community participation and community inclusion; and what can be learnt from community access services policy and practice across Australia. A critical discourse analysis of Australian publicly available community access services extant texts, published between 2000 and 2014, was performed. The written evidence (n = 42) included strategic and ...