This study investigates the experiences of adolescent girls with autism spectrum disorders (ASD) during adolescence. Semi-structured interviews were conducted with three mother-daughter dyads and two additional mothers. A range of issues were highlighted covering physical, emotional, social and sexual domains. Some of these issues were similar to those experienced by boys with ASD during adolescence, such as negative implications of late diagnosis, challenges of transitioning to and coping with high school, 'hands-on' role of parents into adolescence, difficulties adjusting to the increased demands of adolescent hygiene routines, and the importance of learning personal boundaries in interactions with others. Other issues discussed were of particular relevance to adolescent girls with ASD, such as difficulties socialising with neurotypically developing girls, sex-specific puberty issues, and sexual vulnerabilities. This study highlights an important research area and is a preliminary step towards understanding the experiences of adolescent girls with ASD and their families.

A family member with an autism spectrum disorder presents pervasive and bidirectional influences on the entire family system, suggesting a need for family-focused autism spectrum disorder research. While there has been increasing interest in this research area, family-focused autism spectrum disorder research can still be considered relatively recent, and there are limitations to the existing literature. The purpose of this article is to provide theoretical and methodological directions for future family-focused autism spectrum disorder research. In particular, this article proposes Family Systems approaches as a common theoretical framework for future family-focused autism spectrum disorder research by considering theoretical concepts such as Boundaries, Ambiguous Loss, Resilience and Traumatic Growth. We discuss reasons why these concepts are important to researching families living with autism spectrum disorder and provide recommendations for future research. The potential for research grounded in Family Systems approaches to influence clinical support services is also discussed. Family-focused autism spectrum disorder research: A review of the utility of family systems approaches Elizabeth K Cridland, Sandra C Jones, Christopher A Magee and Peter Caputi Abstract A family member with an autism spectrum disorder presents pervasive and bidirectional influences on the entire family system, suggesting a need for family-focused autism spectrum disorder research. While there has been increasing interest in this research area, family-focused autism spectrum disorder research can still be considered relatively recent, and there are limitations to the existing literature. The purpose of this article is to provide theoretical and methodological directions for future family-focused autism spectrum disorder research. In particular, this article proposes Family Systems approaches as a common theoretical framework for future family-focused autism spectrum disorder research by considering theoretical concepts such as Boundaries, Ambiguous Loss, Resilience and Traumatic Growth. We discuss reasons why these concepts are important to researching families living with autism spectrum disorder and provide recommendations for future research. The potential for research grounded in Family Systems approaches to influence clinical support services is also discussed.

Despite the importance and advantages of including people with dementia in research, there are various challenges for researchers and participants to their involvement. This article draws on the literature and experiences of a diverse group of authors, including a person with dementia, to provide recommendations about conducting research with people with dementia. Particular attention is given to in-depth interviews as a qualitative technique. More specifically, topics discussed include interview guide preparation, recruitment, obtaining consent/assent, conducting effective interviews, analysis and interpretation of data, effective communication of research findings, and reflections and recommendations for maintaining researcher and participant health. Given the current obstacles to participation in research of people with dementia, this is a timely article providing useful insights to promote improved outcomes using in-depth interviews.

. (2015). Qualitative research with families living with autism spectrum disorder: Recommendations for conducting semistructured interviews. Journal of Intellectual and Developmental Disability, 40 (1), 78-91. Qualitative research with families living with autism spectrum disorder: Recommendations for conducting semistructured interviews AbstractIn this paper, the insights and experiences of a research team involved in conducting qualitative research with families living with autism spectrum disorder are drawn upon to provide reflections and recommendations across all stages of the qualitative research process. Particular attention is given to the steps involved in semistructured interviews, specifically, interview guide preparation, participant recruitment, obtaining informed and voluntary consent/assent, conducting effective interviews, accurate analysis and interpretation of data, ways to involve participants in data analysis, effective communication of research findings, and providing feedback to participants. In addition, reflections and recommendations are provided for maintaining researcher health throughout the qualitative research process. AbstractIn this paper, the insights and experiences of a research team involved in conducting qualitative research with families living with autism spectrum disorder are drawn upon to provide reflections and recommendations across all stages of the qualitative research process.Particular attention is given to the steps involved in semistructured interviews, specifically, interview guide preparation, participant recruitment, obtaining informed and voluntary consent/assent, conducting effective interviews, accurate analysis and interpretation of data, ways to involve participants in data analysis, effective communication of research findings, and providing feedback to participants. In addition, reflections and recommendations are provided for maintaining researcher health throughout the qualitative research process.3

Low levels of public understanding can contribute to the fear, stigma and social exclusion associated with living with dementia. Dementia friendly communities aim to address this by empowering people with dementia and increasing their social inclusion. As a part of a Community Based Participatory Action Research (CBPAR) process, a multicomponent dementia friendly community intervention supported: research; the establishment of a Dementia Advisory Group and Alliance; an awareness campaign and education in community organisations. Educational events were co-designed and co-facilitated by people with dementia and their care partners. To assess project reach and changes in attitudes of community members, two cross sectional surveys were conducted with adults (aged over 18 years) using validated scales. Independent samples t-tests compared responses to the surveys prior to the commencement of the project (2014) and two years later (2016). In 2016, respondents showed increased agreement with the statements: 'People with dementia participate in a wide variety of activities and interests,' and, 'It is easy to find out about dementia friendly services or organisations in Kiama'. Respondents who attended an educational event reported less negative views about how they themselves would feel if they were diagnosed with dementia compared with respondents who did not attend an event. CBPAR appears useful to support the involvement of people with dementia and the engagement of the community to improve awareness of dementia services. The direct involvement of people living with dementia as spokespeople and educators was an effective way to improve positive attitudes and reduce the negative stereotypes associated with living with dementia. Further research is needed to compare different approaches to the creation of dementia friendly communities in different locations, and to establish the extent to which local interventions are useful to complement efforts to raise awareness of dementia at a national level.

BackgroundResearch highlights the need for carers of people with dementia to acquire relevant and timely information to assist them to access appropriate respite services. Unfortunately, negative experiences of information-seeking can create additional stress for carers and contribute to delays in up-take, or not using respite services at all.MethodsCross-sectional survey data was collected from a convenience sample of n = 84 carers of older people with dementia living in the Illawarra-Shoalhaven region of NSW, Australia. We assessed knowledge, attitudes, information seeking behaviours, and unmet need for respite services in 2016, following national aged care reforms.ResultsOver the previous 12 months, 86% of carers sought respite service information. The majority (73%) of all carers reported an unmet need for respite services, and were relying on personal networks to provide support for respite information. Few utilised the new government gateway ‘My Aged Care’ phone line (11%) or website (25%). However, 35% used a pre-existing helpline to access short term or emergency respite. We found a preference for interpersonal information sources, including local doctor (65%), professionally and volunteer led carer support groups (49%), and family and friends (46%). Those using four or more information sources showed higher capacity to name local respite services. Respite service information seekers were more likely to be caring for someone with behavioural problems, to have received assistance to access services, and to have used respite services in the past 3 to 6 months.ConclusionsNew reforms in the Australian aged care sector have not adequately responded to the needs of carers of people with dementia for respite service information and support. Wider, community-based messaging promoting positive service options and the provision of active personal support is required to address the unmet need for respite in carers of people with dementia.

Overall, the telephone methodology was shown to be feasible and relatively inexpensive. However, the introduction of outcome measures at the service level in parallel with follow-up data collection procedures complicated the collection of response data. The burden of introducing outcome measures in residential services may be reduced by utilizing a phased implementation strategy.

. (2015). The perceptions and experiences of adolescent boys with autism spectrum disorder: a personal construct psychology perspective. Journal of Intellectual and Developmental Disability, 40 (4), 354-367.The perceptions and experiences of adolescent boys with autism spectrum disorder: a personal construct psychology perspective AbstractBackground This study applies personal construct psychology for understanding the experiences of adolescents with autism spectrum disorder (ASD). Method Semistructured interviews were conducted with 26 participants from 8 families, including adolescent males with ASD, mothers, fathers, and adolescent neurotypically developing siblings. Analysis of interview data was structured according to the themes presented in a previous theoretical application of personal construct theory (PCT) for understanding adolescents with ASD. Results Themes included complexity of the adolescent social realm, sense-making in multifaceted situations, identity development, development of flexible processing styles, and understanding and managing physical and emotional changes associated with puberty. Conclusion The study provides empirical support for the application of PCT for understanding adolescents with ASD. The insights provided by the participants may be helpful for adolescents with ASD, family members, and clinicians.