This study investigated the experiences of people with developmental disabilities in self-advocacy groups to better understand the self-advocacy movement, which is currently in its developing stage ...in Korea. Face-to-face interviews with 18 people with disabilities were conducted. Study participants got involved in self-advocacy groups with the expectation of 'voicing our stories', 'meeting new peers', and 'expanding the scope of activity in their local communities'. They participated in various activities from leisure to group advocacy against discrimination based on disability. After participating in self-advocacy groups, they expressed self-confidence, improved their communication skills, and developed new goals for their own lives. Participation in self-advocacy groups helped them replace feelings of loneliness with belonging and expanded their involvement in independent activities and leadership roles.
Points of interests
This article examines the experiences of people with developmental disabilities in self-advocacy groups in Korea.
People joined self-advocacy groups to tell their stories, meet new people, and participate in more activities in the community.
People developed communication, leadership, and self-determination skills and reported less loneliness, more confidence, and a greater sense of belonging.
People wanted to increase their self-advocacy group's activities and membership, have leadership roles, and further advocate for non-discrimination and equal rights for people with developmental disabilities.
Funding and supporters outside of service providers is suggested to give people with developmental disabilities equal power to lead the self-advocacy movement.
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BFBNIB, NUK, PILJ, SAZU, UL, UM, UPUK, VSZLJ
The growth of autistic self-advocacy and the neurodiversity movement has brought about new ethical, theoretical and ideological debates within autism theory, research and practice. These debates have ...had genuine impact within some areas of autism research but their influence is less evident within early intervention research. In this paper, we argue that all autism intervention stakeholders need to understand and actively engage with the views of autistic people and with neurodiversity as a concept and movement. In so doing, intervention researchers and practitioners are required to move away from a normative agenda and pay diligence to environmental goodness-of-fit, autistic developmental trajectories, internal drivers and experiences, and autistic prioritized intervention targets. Autism intervention researchers must respond to these debates by reframing effectiveness, developing tools to measure autistic prioritized outcomes, and forming partnerships with autistic people. There is a pressing need for increased reflection and articulation around how intervention practices align with a neurodiversity framework and greater emphasis within intervention programmes on natural developmental processes, coping strategies, autonomy, and well-being.
Background
A high sense of subjective well‐being has been associated with more prosocial behaviours, better health, work productivity and positive relationships. The aim of this systematic review was ...to explore what impact self‐advocacy has on the subjective well‐being of people with intellectual disabilities.
Method
The authors reviewed articles focusing on the perspectives of adults with intellectual disabilities engaged with self‐advocacy groups. Searches were performed in PsychINFO, Web of Science, SCOPUS, MEDLINE and CIHNL databases, resulting in 16 articles meeting the inclusion criteria. A framework synthesis approach was used to extract data deductively based on the Dynamic Model of Wellbeing.
Results
While self‐advocacy has a positive impact on all domains of the Dynamic Model of Wellbeing, negative impacts associated with participation in a self‐advocacy group were also reported.
Conclusions
The benefits of participating in self‐advocacy groups on the well‐being of individuals with intellectual disabilities outweigh the disadvantages.
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BFBNIB, DOBA, FZAB, GIS, IJS, IZUM, KILJ, NLZOH, NUK, OILJ, PILJ, PNG, SAZU, SBCE, SBMB, SIK, UILJ, UKNU, UL, UM, UPUK
Promoting self-determination is critical to enabling young people to achieve education-related goals and positive postschool employment, community participation, and quality of life outcomes. By ...developing skills associated with self-determination such as choice-making, decision-making, problem solving, goal setting and attainment, planning, self-management, self-advocacy, self-awareness, and self-knowledge, students with disabilities are better prepared to make purposeful decisions and choices. We conducted a meta-analysis of the literature on interventions to promote self-determination and associated skills with students with disabilities in the school context. We analyzed the types of interventions, populations of students with whom they were implemented, outcomes, and rigor of research. Results demonstrated that interventions to promote self-determination can be effective for students across grade levels, disability labels, and settings. There remains a need for increased focus on promoting self-determination within inclusive, general education settings with students with and without disabilities and of diverse backgrounds. Future researchers should also focus on the rigor of methodological design and associated reporting when conducting school-based research. Additional implications for research and practice are discussed.
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NUK, OILJ, SAZU, UKNU, UL, UM, UPUK
Understanding the needs of adolescents and emerging adults with Autism Spectrum Disorder (ASD) with respect to transition to postsecondary education is critical to development of user-informed ...transition programming. Parents of adolescents and emerging adults with ASD (
n
= 52) and ADHD (
n
= 47) completed an online survey. Social interaction training and independent living training were services frequently requested by parents in the ASD group. Additionally, parents of postsecondary students with ASD endorsed distinct challenges with self-advocacy, managing emotions, and managing personal/adaptive skills relative to postsecondary students with ADHD. The profile of parent-reported difficulties and needed services compared to transition to postsecondary education for students with ASD is distinguishable from that for ADHD, suggesting individualized transition planning and in-college supports.
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DOBA, EMUNI, FIS, FZAB, GEOZS, GIS, IJS, IMTLJ, IZUM, KILJ, KISLJ, MFDPS, NLZOH, NUK, OBVAL, ODKLJ, OILJ, PILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, UILJ, UKNU, UL, UM, UPUK, VKSCE, VSZLJ, ZAGLJ
Background
People with intellectual disabilities are at risk of experiencing stigma and require the skills and confidence to deal with stigma in their daily lives.
Method
Development and piloting of ...a 5‐session manualised psychosocial group intervention designed to increase the capacity of people with intellectual disabilities aged 16+ to manage and resist stigma. Ten pre‐existing groups (N = 67) in third sector and education settings participated. Interviews with participants (n = 26), facilitators (n = 9) and significant others (n = 7) 2–4 months after the intervention assessed perceived impact.
Results
Perceived benefits of the intervention for participants included increased understanding, improved connections with others, drive for advocacy, increased activity and self‐efficacy, and opportunity to process difficult events and emotions. Differential impact depending on individuals' pre‐existing self‐advocacy skills was noted.
Conclusions
This early‐stage study indicates that further evaluation is merited to examine feasibility and outcomes of the STORM intervention.
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BFBNIB, DOBA, FZAB, GIS, IJS, IZUM, KILJ, NLZOH, NUK, OILJ, PILJ, PNG, SAZU, SBCE, SBMB, SIK, UILJ, UKNU, UL, UM, UPUK
Background
Stigma attached to having an intellectual disability has negative implications for the social identities and inclusion of people with intellectual disability.
Aim
The study explored the ...effects of membership of independent self‐advocacy groups on the social identity of people with intellectual disability.
Method
Using a constructivist grounded theory methodology, semi‐structured interviews were conducted with 25 members of six self‐advocacy groups which varied in size, resources, location and policy context: two based in the Australian states of Victoria and Tasmania and four in the UK.
Results
Collegiality, ownership and control by members characterized groups. They gave members opportunities for paid or voluntary work, skill development and friendship which contributed to their confidence and engagement with life. Possibilities for new more positive identities such as being an expert, a business‐like person, a self‐advocate and an independent person were opened up. Self‐advocacy is an important means of furthering social inclusion of people with intellectual disability.
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BFBNIB, DOBA, FZAB, GIS, IJS, IZUM, KILJ, NLZOH, NUK, OILJ, PILJ, PNG, SAZU, SBCE, SBMB, SIK, UILJ, UKNU, UL, UM, UPUK
This study investigated strategies for people with intellectual disabilities to self-advocate for inclusion of their priorities in social policy processes in South Africa. Method: Self advocacy ...strategies were identified through a scoping literature review, a review of self advocacy toolkits and semi structured interviews with people with intellectual disabilities and other stakeholders working at non-governmental and disabled people’s organisations. These data sources were triangulated to identify strategies to upskill and support young adults with intellectual disabilities to share their opinions and perspectives to deepen the diversity of voices engaged in social policy advocacy. Results: Data triangulation identified three core strategies for self advocacy, in person, written strategies and engagement through social media. Discussion: Inclusion of people with intellectual disabilities in civic and political life is crucial, and will only be achieved if self advocates are accepted into the policy-making arena. The cycle of perpetuating exclusion needs to be disrupted, to give people with an intellectual disabilities a say in policy decisions that have an impact on their lives. Conclusion: Adopting strategies which enable the inclusion of the voices of people with intellectual disabilities in civic activities holds potential for diversifying perspectives brought to public participation in policy development and implementation, which is currently primarily the domain of non-disabled citizens.
Background
People with intellectual disability in Chile face individual and collective barriers to social participation. Lack of knowledge about their rights and tools for effective self‐advocacy ...seem to be key elements that need to be improved to facilitate participation.
Method
We present PaísDI, a 16 h long manualised program created by self‐advocates in collaboration with an interdisciplinary team, with four modules: rights and intellectual disability, leadership in intellectual disability, effective communication and financial considerations of social projects. This quasi‐experimental study had 349 participants, divided in three groups: people with intellectual disability, relatives and professionals. Feasibility and effectiveness where measured.
Results
The program is shown to be viable and effective, especially in its impact on self‐perception for self‐advocacy activities.
Conclusion
The discussion highlights Chile's historic debt in creating policies that promote self‐determination, knowledge and the empowerment of people with intellectual disability, to bolster their participation as citizens.
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BFBNIB, DOBA, FZAB, GIS, IJS, IZUM, KILJ, NLZOH, NUK, OILJ, PILJ, PNG, SAZU, SBCE, SBMB, SIK, UILJ, UKNU, UL, UM, UPUK
Background
Cancer clinicians and systems aim to provide patient‐centered care, but not all patients have the self‐advocacy skills necessary to ensure their care reflects their needs and priorities. ...This study examines the feasibility, acceptability, and preliminary efficacy of a self‐advocacy serious game (an educational video game) intervention in women with advanced breast or gynecologic cancer.
Methods
Women with recently diagnosed (<3 months) metastatic breast or advanced gynecologic cancer were randomized 2:1 to receive a tablet‐based serious game (Strong Together) (n = 52) or enhanced care as usual (n = 26). Feasibility was based on recruitment, retention, data completion, and intervention engagement. Acceptability was assessed via a postintervention questionnaire and exit interview. Preliminary efficacy was assessed on the basis of change scores from baseline to 3 and 6 months in self‐advocacy (Female Self‐Advocacy in Cancer Survivorship Scale) using intention‐to‐treat analysis.
Results
Seventy‐eight women (55.1% with breast cancer; 44.9% with gynecologic cancer) were enrolled. Feasibility was demonstrated by satisfactory recruitment (69% approach‐to‐consent rate; 93% enroll‐to‐randomize rate), retention (90% and 86% at 3 and 6 months, respectively; 85% data completion), and intervention engagement (84% completed ≥75% of the game). Participants endorsed the intervention’s (75%) and trial’s (87%) acceptability. Participants in the intervention group experienced significant improvements in self‐advocacy at 3 and 6 months compared to participants in the control group.
Conclusions
Strong Together is feasible and acceptable among women with advanced breast or gynecologic cancer. This intervention demonstrates promising evidence of clinical efficacy. A future confirmatory trial is warranted to test the efficacy of the intervention for patient and health system outcomes.
Evidence‐based interventions to enhance patients’ self‐advocacy skills in advanced cancer are lacking. This pilot study supports the feasibility, acceptability, and preliminary efficacy of a self‐advocacy serious game intervention to teach women with advanced breast and gynecologic cancer self‐advocacy skills.
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BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SBCE, SBMB, UL, UM, UPUK
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