BACKGROUND:This article demonstrates the value of applying phenomenology in qualitative early childhood disability research. It offers methodological guidance for disability scholars to support the inclusion of the perspectives of people who communicate non-symbolically. METHOD:Drawing on the film The Humming Child (Sundby, 2011), which portrays Agnes, a young girl with complex intellectual disabilities, we use essential elements of Merleau-Ponty's extensive work to propose four applied phenomenological methodological cues: "Embodied expressivity is valid," "Make yourselves visible," "Accept the possibilities for ambiguity," and "Address vulnerability to ensure ethically sound projects." RESULTS:These methodological cues show that embodied phenomenology is valuable in countering dominant scientific epistemologies in disability research, including research involving people with profound intellectual and multiple disabilities. Expanding epistemological limits to generate valid knowledge can include those previously omitted. CONCLUSION:Merleau-Ponty's embodied phenomenology offers valuable methodological insights for understanding non-symbolic perspectives expressed through movement.
BACKGROUND:The aim of this study was to analyse the experiences of bereaved young adults 2-9 years after the loss of a sibling with profound intellectual and multiple disabilities. METHOD:The research material comprised information obtained from typically developing siblings (aged 18-29 years) of persons with profound intellectual and multiple disabilities. Data were analysed using grounded theory with open and axial coding. RESULTS:Four main areas were identified, reflecting the key issues explored during the interviews. These included the following: "Lived emotions," "Quality of life," "Relationships with parents," "Reconceptualisation of identity." CONCLUSION:The research has shown that the death of a sibling with profound intellectual disabilities has significant and long-lasting implications for the brother/sister's entire life. The results of this study, combined with existing literature, provide a basis for understanding the experiences of siblings after the loss of a brother or sister with intellectual disabilities.
BACKGROUND:Disability support workers (DSWs) report experiencing negative work wellbeing outcomes (e.g., burnout). This study asked DSWs about workplace issues that impact their wellbeing most, and solutions that disability support organisations could adopt to enhance their wellbeing. METHOD:Two hundred and ninety-four DSWs, recruited from organisations that support people with disabilities (including intellectual and developmental disabilities), completed an online survey. RESULTS:Supporting people to achieve positive outcomes and being recognised for their work promotes job satisfaction, while supporting people who exhibit challenging behaviour and experiencing work-home conflict led to job stress. DSWs want more positive behaviour support training, and training that is face-to-face or on-the-job. Dedicated time to complete administrative tasks on shift, regular team meetings, supervision, and co-worker praise and mentoring were also endorsed. CONCLUSION:These findings offer DSW lived experience guidance to organisations regarding what they can do in the first instance to enhance the work wellbeing of their DSW workforce.
BACKGROUND:This project was conducted in partnership with an Ontario-based community living agency to study labour undertaken by disability support workers to read the institutional records of clients with intellectual disabilities and submit class action settlement claims for financial compensation. We drew on Levinasian theory to analyse reflections of disability support workers who witnessed violent institutional histories found in survivors' records. METHOD:We conducted focus groups with disability support workers and their supervisors. We took an interpretive phenomenological approach to analysing data. RESULTS:Our interpretation suggests at least three results: (1) Witnessing was collaborative work that strengthened service relationships; (2) Witnessing was recognition work that cultivated understanding of survivor histories and behaviours; (3) Witnessing was investigatory work that rewrote historical record. CONCLUSION:These findings are significant for a disability service sector that replaced large-scale institutional facilities but still risks producing conditions of institutionalisation.
BACKGROUND:Community stakeholders play a crucial role in supporting the wellbeing of people with intellectual disabilities, including during hospitalisation. This study explored community stakeholder perceptions of the barriers to safe and equitable hospital care for adults with intellectual disabilities in Aotearoa New Zealand. METHOD:Semi-structured interviews (n = 9) and anonymous online surveys (n = 38) were analysed using reflexive thematic analysis within an interpretive description framework. RESULTS:Four themes were generated: experiencing the hospital as unsafe due to structural and interpersonal discrimination; communication breakdowns that undermine care and amplify distress; distress misread as behavioural issues; and stakeholders becoming the default safety net. Across themes, discrimination emerged as the underlying mechanism shaping patient safety, communication practices, behavioural interpretations, and reliance on stakeholder vigilance. CONCLUSION:These findings highlight the need for systems-level change, including improved training on working with people with intellectual disabilities, enhanced communication practices, and strengthened continuity of care to support equitable hospital experiences.
BACKGROUND:People with intellectual disabilities experience inequities across the cancer continuum. Reasonable adjustments are critical to reducing barriers and ensuring equitable care. This study aimed to explore healthcare professionals' perspectives on reasonable adjustments in cancer care for people with intellectual disabilities. METHOD:Semi-structured interviews were conducted with 15 healthcare professionals with experience in Australian cancer care settings. Deductive-inductive thematic analysis was conducted using the COM-B model as a guiding framework. Data were organised under Capability, Opportunity, Motivation, and Behaviour domains, with subthemes generated inductively. RESULTS:Healthcare professionals were largely unfamiliar with the term 'reasonable adjustments' despite reporting some use in practice. Participants reported limited training and resources, and system- and policy-level barriers and facilitators. CONCLUSION:Transformative change is needed to ensure consistent application of reasonable adjustments in cancer care. This study highlights opportunities in policy, practice, and health-system processes to enhance accessible cancer care for people with intellectual disabilities.
BACKGROUND:Parents with intellectual disabilities often require support with parenting. Information about their experiences of accessing formal support for parenting is dispersed throughout diverse literature. This study aimed to synthesise current qualitative knowledge about this topic. METHOD:We conducted a systematic review and qualitative meta-synthesis. RESULTS:Of 38 eligible studies, most reported parents being unable to access needed support for parenting. Support provided was often perceived as unwanted, unsuitable, dictatorial, disempowering, judgemental, or inaccessible. Parents described the right support as offered rather than imposed, available when needed, tailored to their learning needs, encouraging, respectful, and caring. Rather than passively receiving support, they actively sought and responded to support based on these perceptions. CONCLUSION:The study revealed that parents with intellectual disabilities have clear views on the support they need and exercise agency in trying to access the right support. Practitioners can provide effective support by engaging in relational, trust-based practices.
BACKGROUND:Previous research has found that people with intellectual disabilities performed wayfinding tasks at or below their intellectual level. This research aims to examine what small-scale spatial abilities predict wayfinding in people with intellectual disabilities. METHOD:Sixty-one participants with intellectual disabilities aged 12-25 years completed a wayfinding task and eight small-scale spatial ability tasks, the latter of which were based on the double-dimension theoretical framework. RESULTS:Extrinsic-dynamic spatial abilities predict wayfinding route knowledge. Intrinsic-Dynamic spatial abilities predict wayfinding landmark knowledge. Having Down syndrome (vs. not having it) also predicts a unique variance in landmark knowledge. Sensitivity analyses based on intelligence quotient (IQ) attenuate some, but not all, results. CONCLUSION:Theoretically, small- and large-scale spatial abilities are associated in people with intellectual disabilities, as they are in typically developing people. In practice, future intervention programs might consider training small-scale spatial abilities to enhance wayfinding for people with intellectual disabilities.
BACKGROUND:Mothers of children with intellectual disabilities often experience stress, anxiety, and depression, impacting family quality of life (FQOL). Yoga and compassion meditation program (YCMP) may offer accessible strategies to support wellbeing. This feasibility study explored preliminary effects of brief YCMP on mental health and FQOL outcomes among mothers of children with intellectual disabilities in Nepal. METHOD:A randomised feasibility study enrolled 103 mothers; 90 completed assessments. The YCMP included a 75-minute in-person session, take-home practices, and a 6-week refresher. Outcomes included perceived stress, anxiety and depression symptoms, and FQOL. RESULTS:Post-intervention, YCMP participants were in the "acceptable" satisfaction category for disability-related support and physical/material wellbeing, and low perceived stress, compared with controls. Within the intervention group, anxiety and depression symptoms decreased, while emotional wellbeing and parenting satisfaction improved. CONCLUSION:YCMP may improve mental health and FQOL for mothers of children with intellectual disabilities in low-resource settings. Larger randomised studies are warranted.
BACKGROUND:Low diagnostic rates of Fetal Alcohol Spectrum Disorder (FASD) persist in the United Kingdom. This qualitative study explored clinicians' views about the FASD diagnostic process, post-diagnostic supports and disability identity formation. METHOD:Twenty-five clinicians across NHS Scotland were interviewed online about: FASD knowledge and training; clinical practice; facilitators and barriers in FASD practice; and diagnostic impact on young people's self and disability identity. Data were analysed using reflexive thematic analysis. RESULTS:Clinician views and compassionate practice were framed by their training, professional role, and service type. In the FASD diagnostic process, clinicians valued their role in supporting people's self-understanding and access to supports. Diagnostic practice was impacted by ethical concerns for the biological parent/child relationship and broaching FASD and disability. CONCLUSION:Multidisciplinary and neurodevelopmental assessment services can support complexity in FASD practice. Clinician roles in diagnostic practice can contribute to positive experiences of diagnosis, disability, and identity for young people.
BACKGROUND:This study explored the lived experiences and subjective feelings of inclusion among students with intellectual disabilities in cooperative physical education (PE) in Germany. METHOD:Adaptive, semi-structured interviews were conducted with six students with mild to moderate intellectual disabilities and analysed using thematic analysis. RESULTS:Two themes emerged: (a) Being part of two classes - highlighting feelings of belonging when participating either jointly with the cooperation class or separately with peers with disabilities; and (b) "They don't want to pass me the ball," illustrating (dis-)ability as a barrier to participation. Both integrated and segregated activities could foster belonging, depending on individual needs and preferences. Participants also described internalised ableism, which shaped expectations of exclusion and self-doubt. CONCLUSION:Inclusion in PE is experienced in diverse ways, and flexible approaches that acknowledge individual abilities and perceptions are essential for fostering meaningful participation and belonging.
BACKGROUND:Engagement has been highlighted as a means to address challenges faced by persons with intellectual disabilities who seek accessible and effective mental health care. This study explored the effectiveness of practical engagement strategies within a community-based mental health service. METHOD:This proof-of-concept study engaged clients, caregivers, and clinicians in a co-design process to create an annotated welcome package outline. Client and caregiver engagement strategies were applied and evaluated on their effectiveness in engaging study participants within the product design process. RESULTS:Being Empowered, Being Heard and Valued, Engaging Processes, and Sharing Information and New Learning were four themes that emerged from the data. Results suggested that the Project Action Team members felt engaged during the co-design process and recognised the importance of their engagement. CONCLUSION:This study provided preliminary evidence that the practical engagement strategies were effective in building client and caregiver engagement during a program level activity.
Background: This study aimed to gain an in-depth understanding of how adults with intellectual disabilities experience kapa haka and explore the benefits and challenges they experience, in comparison with the general population.Method: The research was qualitative in nature. Data gathering methods included a survey with performers, and semi-structured interviews with members of one case study comprised of kapa haka performers, tutors, and families.Results: The benefits for adults with intellectual disabilities participating in kapa haka include increased confidence; a sense of belonging and connection; improved communication; and stronger cultural connections. These benefits were similar to those experienced by the general population.Conclusion: The overall findings from the study highlighted the central and positive role kapa haka can play in the lives of adults with intellectual disabilities.
BACKGROUND:Young people with intellectual disabilities experience persistent disadvantages in post-school outcomes. This study examined trends in post-school outcomes for young Australians with intellectual disabilities over a 10-year period, relative to peers with other disability types or no disabilities. METHOD:Using data from four waves of the Survey of Disability, Ageing and Carers (2012-2022), outcomes were examined for 20-29-year-olds with intellectual disabilities. Outcomes across five domains were examined: school completion, further education, labour force participation, income and government support. RESULTS:Analyses showed a persistent pattern of inequality across all domains. While secondary school completion improved, these gains did not translate to further education or employment - gaps widened in both areas. Economic inequality, including low income and reliance on government support, remained unchanged. CONCLUSION:Despite major policy investment, outcomes remain poorer for this group. Greater focus on inclusion and coordinated cross-sector support is required to address entrenched inequities.
Aboriginal and Torres Strait Islander children with a disability are over-represented in child welfare systems worldwide. Despite this, little is known about their involvement with the Australian child protection system or their lived experiences. Led by Indigenous researchers and methodologies, qualitative findings from yarning sessions with 46 kinship carers across Western Australia informed this research. This research is part of the Indigenous Child Removals WA (I-CaRe WA) project. Difficulty accessing disability assessments and diagnoses for children resulted in a lack of access to disability support services and missed opportunities for early intervention. Priority areas for improvement included appropriate and accessible training for carers and practice support. Urgent reform to account for the needs of Aboriginal kinship carers and children with disabilities in their care is required to improve their health and wellbeing.
BACKGROUND:Parents with intellectual disabilities often face challenges during pregnancy that may impact child safety. Early intervention is crucial to mitigate risks. Safe Start is a safety-planning intervention. This study assessed Safe Start's feasibility. METHOD:Five families and their youth care workers assessed the application of nine working elements (i.e., the ways in which youth care workers collaborate with parents, parental appreciation of youth care worker and intervention, and child safety outcomes) in terms of changes in dynamic risk factors. RESULTS:Most families identified the majority of the working elements, and youth care workers reported substantial application of these elements. The youth care worker and the intervention were generally well appreciated by parents. Across families, child safety risks declined, and dynamic risk factors decreased in three families. CONCLUSION:Preliminary findings suggest that Safe Start may be feasible and appreciated, with promise for improving child safety.
BACKGROUND:Adolescents with intellectual disabilities face heightened risks of sexual victimisation, making sexuality education a critical protective factor. METHOD:This qualitative study explored how mothers conceptualise, implement, and experience challenges in delivering sexuality education within Indonesia's conservative sociocultural context. In-depth interviews were conducted with 10 mothers of adolescents aged 10-17 years with intellectual disabilities. Thematic analysis identified six core themes: (i) understanding of sexuality education, (ii) mothers' attitudes, (iii) educational practices, (iv) barriers, (v) mothers' roles, and (vi) support needs. RESULTS:Mothers primarily linked sexuality education to hygiene, body protection, and abuse prevention, usually taught reactively during puberty or behavioural incidents. Barriers included discomfort, low confidence, stigma, limited knowledge, and a lack of culturally appropriate resources. Despite these constraints, mothers recognised their central role and expressed strong motivation for structured training and collaboration. CONCLUSION:Findings highlight the urgency of family-centred, culturally sensitive interventions to promote safer, inclusive environments.
BACKGROUND:The off-label prescription of psychotropic medications for behaviours that challenge in the absence of mental illness is a significant public health concern. SPECTROM, a staff training program, was co-produced in the United Kingdom to address these issues. METHOD:140 support staff received SPECTROM training. At the end of the training, focus groups were conducted with 14 staff to receive feedback. In the current article, we present data from the two focus groups. RESULTS:The following themes were identified: improved knowledge, self-confidence, facilitated self-reflection, empowered staff, better attitude on medication use for behaviours that challenge, improved support provided, and challenges of SPECTROM delivery and implementation. CONCLUSION:The SPECTROM training and its resources were considered useful and relevant to staff's practice. Challenges were identified in delivering and implementing SPECTROM training, which needs to be addressed before a full-scale randomised controlled trial.
BACKGROUND:This study examined how use of formalised coercive measures imposed on people with intellectual disabilities aligns with Norwegian law. METHOD:Cross-sectional study including 70 people subject to coercive measures, mean age 44 years, 54% men. Data were collected through structured interviews, hospital records, and municipal decisions on coercive measures. RESULTS:Regional prevalence of people subject to coercive measures among people with intellectual disabilities was 8.5%. Municipalities sought exemptions from staff educational requirements in 97% of cases where people were subject to coercive measures, which were nearly always granted. On average, each person received care from 10 different staff members weekly. Twenty-three percent reported that care was not provided by a stable staff group. Notably, 29% of participants were subject to coercive measures without a legally valid authorisation. County-level governor inspections were rare. CONCLUSION:Discrepancies between legal care requirements and practice highlight the need for compliance, staff training, and stronger supervision.
BACKGROUND:Incapacitation is a legal measure that restricts self-determination for people with intellectual disabilities by giving decision-making authority to another person. This study explores how Polish special education teachers understand and engage with this instrument. METHOD:Semi-structured focus group interviews were conducted with three groups, comprising 21 teachers from special schools. The material was analysed using the principles of Interpretative Phenomenological Analysis. RESULTS:Four themes were identified: meanings ascribed to incapacitation, school-parent dynamics, associated risks, and educational efforts promoting autonomy. Findings reveal ambivalent attitudes, limited awareness of legal alternatives, and a tendency to prioritise protection over autonomy. CONCLUSION:Pedagogical recommendations include regular training, sharing international best practices - especially regarding the United Nations Convention on the Rights of Persons with Disabilities - and creating spaces for dialogue among schools, families, and institutions. Supportive actions should be planned within school policies, particularly during transitional periods, to empower all participants in the educational process.
