On the outside looking in: a phenomenological study of the lived experience of Australian adults with a disorder of the corpus callosum.

BACKGROUND: While classified as a rare condition, a congenital disorder of the corpus callosum (DCC) is one of the most commonly identified brain anomalies in newborns, occurring in 1:4000 live births. Advances in imaging techniques have improved early diagnosis for children, yet adults with a DCC-who may present with extreme heterogeneity in cause and impact-often experience challenges in receiving a definitive diagnosis and accessing appropriate services and supports. To date, the dearth of evidence documenting the lived experiences of adults with DCC has made it difficult to determine adequate policy and service responses. This exploratory research aims to address this gap by presenting the first qualitative examination of the experiences and impact of complete or partial agenesis of the corpus callosum among adults. RESULTS: Eight face-to-face interviews were conducted with Australian adults, aged 23-72 years, to explore their lived experience. Data was collected in four Australian states from June to August 2017. Thematic and interpretive analyses were employed to analyse data. Three emergent themes described difficulties related to: (1) reactions to the diagnosis; (2) access to supports and key life domains, and (3) identifying as an adult. Interview analysis described lived experiences typically outlining a lifetime of exclusion and misunderstanding from family, educators and disability and health support services. CONCLUSIONS: This paper contributes to filling the knowledge gap around a rare congenital brain disorder affecting the lives of adults. Findings confirm a considerable lack of information and support for adults living with corpus callosum disorders. Greater professional and societal understanding is needed to improve access to the key life domains of education, employment and social inclusion for adults with a DCC. To instigate truly effective change, social research must tackle the issues of applicability and impact to alter the dominance of uninformed practices, hindered by prevailing myths. This research paves the way for further phenomenological studies in which participant narrative is vital. Further research will elicit stronger policy and service responses for all current and emerging adults with a DCC.

Enabling Action: Reflections upon Inclusive Participatory Research on Health with Women with Disabilities in the Philippines.

People with disabilities experience health disparities arising from social, environmental, and system-level factors. Evidence from a range of settings suggests women with disabilities have reduced access to health information and experience barriers to screening, prevention, and care services. This results in greater unmet health needs, particularly in relation to sexual and reproductive health. Women with disabilities are also more likely to experience physical and sexual violence than women without disabilities, further undermining their health. Community-based participatory research (CBPR) can generate knowledge and underpin action to address such health disparities and promote health equity. However, the potential and challenges of disability inclusion in CBPR, particularly in contexts of poverty and structural inequality such as those found in low- and middle-income countries, are not well documented. In this paper, we reflect on our experience of implementing and evaluating W-DARE, a three-year program of disability-inclusive CBPR aiming to increase access to sexual and reproductive health and violence-response services for women with disabilities in the Philippines. We discuss strategies for increasing disability inclusion in research and use a framework of reflexive solidarity to consider the uneven distribution of the benefits, costs, and responsibilities for action arising from the W-DARE program.

"Freedom to go where I want": improving access to sexual and reproductive health for women with disabilities in the Philippines.

Women with disabilities experience a range of violations of their sexual and reproductive rights. The Philippines ratified the United Nations Convention on the Rights of Persons with Disabilities and have laws in place to promote the rights to sexual and reproductive health and protection from violence. However, limited resourcing, and opposition to such laws undermine access to these rights for all women. Inadequate disability inclusion within policy and programming, and limited disability awareness of services, further impedes women with disabilities from attaining these rights. The W-DARE project (Women with Disability taking Action on REproductive and sexual health) was a three-year participatory action research program designed to (1) understand the sexual and reproductive health experiences and needs of women with disabilities; and (2) improve access to quality sexual and reproductive health, including violence response services, for women with disabilities in the Philippines. In response to the highlighted need for more information about sexual and reproductive health and greater access to services, the W-DARE team developed and implemented a pilot intervention focused on peer-facilitated Participatory Action Groups (PAGs) for women with disabilities. This paper focuses on the qualitative findings from the evaluation of this PAG intervention.

Sexual and reproductive health services for women with disability: a qualitative study with service providers in the Philippines.

BACKGROUND: The Philippines has ratified the United Nations Convention on the Rights of Persons with Disabilities and recently passed domestic legislation protecting the sexual and reproductive rights of people with disability. However women in the Philippines continue to report barriers to sexual and reproductive health services, and there is limited empirical evidence available to inform policy makers' efforts to respond. This study aims to contribute to the available evidence by examining service providers' perceptions of disability and their experiences providing sexual and reproductive health services to women with disability. METHODS: The study was conducted as part of a larger three-year program of participatory action research that aims to improve the sexual and reproductive health of women with disabilities in the Philippines. Fourteen in-depth interviews and two focus group discussions were conducted with a total of thirty-two sexual and reproductive health service providers in Quezon City and Ligao. Qualitative data were analysed to identify key themes in participants' discussion of service provision to women with disability. RESULTS: Analysis of service providers' accounts suggests a range of factors undermine provision of high quality sexual and reproductive health services to women with disability. Service providers often have limited awareness of the sexual and reproductive health needs of women with disability and inadequate understanding of their rights. Service providers have had very little training in relation to disability, and limited access to the resources that would enable them to provide a disability inclusive service. Some service providers hold prejudiced attitudes towards women with disability seeking sexual and reproductive health services, resulting in disability-based discrimination. Service providers are also often unaware of specific factors undermining the health of women with disability, such as violence and abuse. CONCLUSION: Recent legislative change in the Philippines opens a window of opportunity to strengthen sexual and reproductive health service provision across the country. However the development of services that are disability-inclusive will require substantial efforts to address supply-side barriers such as prejudiced service provider attitudes and limited capacity. Disability inclusion must be prioritised for the national goal of responsible parenthood and reproductive health to be realised for all.

W-DARE: a three-year program of participatory action research to improve the sexual and reproductive health of women with disabilities in the Philippines.

BACKGROUND: In many contexts, women with disability have less access to sexual and reproductive health information, screening, prevention, and care services than women without disability. Women with disability are also known to be more likely to experience physical and sexual violence than women without disability. In the Philippines, health service providers often have little awareness of the sexual and reproductive experiences of women with disability and limited capacity to provide services in response to their needs. Very limited data are available to inform development of disability-inclusive sexual and reproductive health, and violence prevention and response, services in the country. This paper presents the protocol for W-DARE (Women with Disability taking Action on REproductive and sexual health), a three-year program of participatory action research that aims to improve the sexual and reproductive health of women with disability in the Philippines. DESIGN: W-DARE is a disability-inclusive program that will use mixed methods to 1) increase understanding of factors influencing the sexual and reproductive health of women with disability, and 2) develop, implement and evaluate local interventions to increase supply of and demand for services. W-DARE will generate data on the prevalence of disability in two districts; the wellbeing and community participation of people with and without disability, and identify barriers to community; and describe the sexual and reproductive health needs and experiences, and service-related experiences of women with disability. These data will inform the development and evaluation of interventions aiming to improve access to sexual and reproductive health services, and violence prevention and response services, for women with disability. Local women with disabilities, their representative organisations, and SRH service providers will be involved as members of the research team across all stages of the research. DISCUSSION: This three-year study will provide evidence about factors undermining the sexual and reproductive health of women with disability in a lower-middle income country, and provide new insights about what may be effective in increasing access to services in settings of limited resources. Findings will be relevant across Asia and the Pacific. Analysis of the program will also provide evidence about disability-inclusion in participatory action research approaches.

Sexual and reproductive health and philanthropic funding in Australia.

UNLABELLED: Background Australia's philanthropic sector is growing and could support efforts to improve sexual and reproductive health (SRH). However, philanthropy is often misunderstood in Australia and there is limited evidence of philanthropic support for SRH initiatives. METHODS: We aimed to understand the barriers and facilitators to philanthropic funding of SRH initiatives in Australia. A qualitative approach was used and involved 13 in-depth interviews with professionals from the philanthropic sector, and from organisations and services involved in SRH. RESULTS: Barriers to organisations in seeking philanthropic funding for SRH activities included insufficient resources for writing grant applications and the small financial value of philanthropic grants. Facilitators to seeking philanthropic funding for SRH included a perception that government funding is shrinking and that philanthropic research grants are less competitive than government grants. Philanthropic participants identified that barriers to funding SRH include the sensitive nature of SRH and the perceived conservative nature of philanthropy. Facilitators identified by these participants in supporting SRH initiatives included networking and relationships between grant-makers and grant-seekers. All participants agreed that philanthropy does and could have a role in funding SRH in Australia. CONCLUSIONS: The findings of this research suggest that barriers to philanthropic funding for SRH in Australia exist for organisations attempting to access philanthropic funding. Philanthropic organisations could provide more financial support to Australian SRH service providers, as happens in countries such as the United States and United Kingdom. Addressing these barriers and promoting the facilitators could lead to increased awareness of SRH by Australia's philanthropic sector.