ABSTRACT

Background

Many parents are the primary caregivers for their adult children with intellectual and/or developmental disabilities. While there can be many benefits of caregiving, there can also be negative consequences for the parent caregiver and, in turn, for their adult child with intellectual and/or developmental disabilities. Given the critical care that parents provide to their adult children with intellectual and/or developmental disabilities, we aimed to understand the supports parents need to be effective caregivers.

Method

Qualitative data (write-in responses) from a national survey completed by 315 parents of adults with intellectual and/or developmental disabilities were analysed using thematic analysis.

Results

Four themes emerged from the data, including the need fortangible support, social support, help navigating disability services and resources, and assistance with future planning.

Conclusions

Our findings point to the need for financial compensation for parent caregivers of adults with intellectual and/or developmental disabilities, enhanced disability services, and spaces for families to connect and share resources.

ABSTRACT

Background

This study aimed to evaluate the everyday ways that individuals with mild and moderate intellectual disabilities exercise choice and control.

Method

Photovoice with 17 adults with mild to moderate intellectual disability who were receiving individual funding was conducted. Focus groups were held to review the photos.

Findings

While some participants directed the activity they had chosen, others appeared to have been restricted to activities planned and organised by the service provider. Many participants took photos of locations rather than activities. In these cases, the locations they photographed represented their identity or something that was personally meaningful to them. This illustrated the individuals' power to create spaces and/or travel to places that are important to them.

Conclusions

It is important to understand how certain activities facilitate choice and control. A critical examination of real choice compared with generic activities framed as choice continues to be needed.

ABSTRACT

Background

Parents' decisions to use out-of-home support for children with intellectual disabilities significantly impact all family members, including siblings. However, siblings' perspectives on this transition to group homes remain underexplored. This study examines siblings' emotional experiences and changes in their personal and family lives due to their brother or sister's move to a group home.

Methods

Using photo-elicitation and in-depth interviews, we engaged eight children (aged 7–17) with siblings in group homes. Participants captured changes or consistencies in daily life through photographs, which served as conversation triggers.

Results

Participants highlighted objects and spaces reminding them of their sibling and documented missed or regained activities and interactions. Five themes emerged, reflecting their emotional experiences and perspectives.

Conclusions and Implications

Siblings provided a nuanced view of their sibling's stay, noting benefits and feelings of incompleteness. Professionals should consider siblings' emotions and beliefs in caregiving decisions, recognising the significant impact on their lives.

ABSTRACT

Background

We identified participant-level risks and safeguards in social-behavioural research with adults with developmental disabilities.

Method

We conducted a qualitative systematic review on risks and safeguards in peer-reviewed research with adults with developmental disabilities. We identified research reporting on risks and safeguards published between 2009 and 2023 by searching eight databases and conducting hand searches of reference lists. We conducted thematic analysis using independent data extraction and coding, and investigator triangulation.

Results

From 23 manuscripts, we identified: (1) risks associated with research participation of adults with developmental disabilities (e.g., physical, relational, psychological, and social risks as well as a loss of privacy and confidentiality) and (2) safeguards (e.g., using guiding frameworks, reducing participant burden, securing privacy and confidentiality, and fostering psychological and relational well-being).

Conclusions

We encourage researchers to foster positive experiences so research participants feel valued and respected, and enjoy having the experience and opportunity to contribute to scientific discoveries.

ABSTRACT

Background

Limited knowledge exists regarding the effectiveness of training programmes for individuals with Down syndrome, particularly innovative approaches like tele-coaching. Our pilot study aimed to improve strength and balance using tele-coaching sessions in children with Down syndrome.

Materials and Methods

We enrolled 18 children and adolescents (aged 9–17 years) with Down syndrome. The intervention consisted of a training programme based on games and was conducted remotely through an online platform (e-gym) 3 days per week (15 weeks). Participants engaged in playful activities targeting limb strength and balance.

Results

We found an improvement in systolic blood pressure (p = 0.04) and balance (p = 0.002). Our analysis showed a non-significant decrease in adiposity parameters, including weight, BMI, BMI z-score, WC and WC/H.

Conclusions

Our findings contribute to evidence supporting online exercise interventions for individuals with Down syndrome. Integrating these interventions into community support programmes could enhance access to tailored services.

ABSTRACT

Background

This study sought a holistic understanding of lived experiences of individuals with a sibling who has intellectual and developmental disabilities using photovoice.

Methods

Seven adult female siblings of individuals with intellectual and developmental disabilities in South Korea engaged in six weekly photovoice sessions, including an orientation session, phototaking on participant-driven themes, and four group discussion sessions in which they shared their photos.

Results

Thirteen subthemes related to four primary themes highlighted their experiences. Although these siblings faced pressure from the responsibilities of caregiving, they described growth and reflection on their identities, subsequent shifts in perspectives, and finding a balance between self-care and fulfilling responsibilities to maintain their love for their sibling.

Conclusions

Social work professionals should acknowledge their challenges and growth and help them find balance in their life and caregiving role. It is also important to address their unique needs by considering the intersection of gender, culture, and disability.

ABSTRACT

Background

This article explores the social life within and outside the university of 17 young Spanish people with intellectual disabilities studying in a postsecondary education programme. This programme offers training for inclusion in the labour market. Students obtain a certificate, which is not an official university degree.

Methods

Inclusive research was conducted using photovoice. The data were collected through photographs, interviews, focus groups and discussion groups. The data were analysed using a system of categories and codes.

Results

Co-researchers identified family members, technology, and the course they are studying as supportive factors in their social life. Conversely, family overprotection, their characteristics, and bullying in earlier educational stages were barriers to establishing social relationships. The students propose recommendations, including improving their social and personal skills, increasing activities and gatherings among university students, and tackling bullying.

Conclusions

That collaboration is necessary to ensure a more inclusive and equitable social environment for everyone.

ABSTRACT

Background

Existing literature failed to explore the parental expectations and experiences from physiotherapy for children with Down syndrome. Hence, we aimed to validate a semi-structured interview guide to explore parental experiences and expectations from physiotherapy for children with Down syndrome.

Methods

A 28-item interview guide was reduced to a six-item interview guide and validated through three rounds of Delphi survey in experts with prior experience in children with disabilities. The first and second rounds failed to meet the S-CVI/Ave threshold of 0.90, leading to revisions based on feedback.

Results

After suggestions were received from 10 experts with an average of 2 years of experience in dealing with children with Down syndrome, a six-item interview guide was finalised, with I-CVI of 0.78–1 and S-CVI of 0.9.

Conclusion

The generated interview guide aimed to explore the experiences and expectations of parents of children with Down syndrome undergoing physiotherapy, found to be valid.

ABSTRACT

Background

Individuals with intellectual disabilities (ID) typically exhibit cognitive deficits. While single bouts of physical activity (PA) have shown cognitive benefits in typically developing individuals, the effects on those with ID are unclear. This study aimed to investigate the effectiveness of single bouts of PA on cognition in individuals with ID.

Method

This registered review followed the PRISMA guidelines and searched for eligible studies on PubMed and Scopus.

Results

Eight studies were included, showing that participants demonstrated transient improvements in cognition, including information processing speed, inhibition and working memory, following moderate aerobic-based intensity PA. However, findings regarding the optimal intensity or types of PA for enhancing specific cognitions, and the effects on higher-level cognition (e.g., planning), are limited.

Conclusions

Single bouts of PA may transiently enhance cognition in adolescents and young adults with mild to moderate ID, but more rigorous research with a feasible protocol is required to refine exercise prescriptions for maximal cognitive benefits.

ABSTRACT

Background

Mucopolysaccharidosis type III (MPS III) is a rare lysosomal storage disease with systemic complications. This scoping review aimed to synthesise evidence regarding methods to diagnose and monitor MPS III.

Methods

We searched 10 databases for English and Spanish citations published from 2017 to 2022. Our study focused on human-based research that reported methods to diagnose and monitor MPS III, including experimental, quasi-experimental, observational studies, reviews, and guidelines. We followed PRISMA-ScR guidelines for screening and data extraction. Descriptive statistics and qualitative synthesis were used for analysis.

Results

We included 35 eligible articles. Most studies were conducted in Europe and Central Asia (17/35, 48.6%) and constituted case reports (19/37, 51.4%). Clinical symptoms were reported in 30 articles and predominantly pertained to the nervous system (25/30, 83.3%), including intellectual disability (19/30, 63.3%), movement incoordination (17/30, 56.6%), and behavioural issues (16/30, 53.3%). Diagnostic methods (23/35, 65.7%) featured genetic testing and biochemical assays, including GAG measurement in urine. Brain MRI was the most recorded imaging study (11/20, 55.0%), while electrographic studies (10/35, 28.5%) encompassed electrocardiogram (5/10, 50%), electroencephalogram, and audiometry (3/10, 30% each). Scales and questionnaires (8/35, 22.8%) were reported, with the Bayley Scales of Infant Development being the most described (4/8, 50%).

Conclusion

Our study comprehensively overviews the contributions of diagnostic and monitoring methods for MPS III. Our findings can guide clinicians in providing evidence-based care for this rare disease.

Journal of Applied Research in Intellectual Disabilities, Volume 38, Issue 2, March 2025.

ABSTRACT

Background

We aimed to identify key factors in implementing and adhering to positive behaviour support (PBS), provided by frontline staff, targeting challenging behaviours of people with intellectual disabilities living in residential group homes.

Method

Using semi-structured interviews with 12 frontline staff members, we collected perspectives on a PBS training that they received. In two separate focus groups with nine frontline staff members and nine PBS trainers, we discussed factors perceived to influence PBS implementation and adherence. Hybrid coding and thematic analysis were employed.

Results

Frontline staff were positive about the content of the training and noticed improvements in challenging behaviours of the people they cared for. Key factors for implementation and adherence included organisation-wide embedding of PBS, management support, motivating staff, clear documentation, regular evaluations, and additional training sessions.

Conclusions

This study provides valuable insights for the implementation of and adherence to frontline staff-provided PBS.

ABSTRACT

Background

This review aimed to synthesise the literature about interventions for parents of adolescents with intellectual disability, including parental experience of receiving interventions and intervention effectiveness.

Methods

Eligible interventions aimed to improve parenting skills and/or parent–adolescent relationships, adolescent behavioural/emotional problems and/or parent well-being. ASSIA, EMBASE, Medline, PsycINFO and Web of Science were last searched on 11 July 2024. The TIDieR checklist and the MMAT were used for quality appraisal. A narrative synthesis was conducted. (Pre-registration: PROSPERO CRD42022384409).

Results

Twelve studies with 1041 families were included. Intervention descriptions were detailed; however, study quality was mixed. Nearly all studies reported the intervention was associated with positive effects on parenting, parent–adolescent relationships, adolescent behaviour/emotional problems or parent well-being. Three randomised controlled trials (RCTs) offer the strongest evidence but are limited in quality. All studies investigating parent experiences reported positive responses.

Conclusions

High-quality studies (e.g., RCTs) are needed to enable conclusions about efficacy and effectiveness.

ABSTRACT

Background

In Australia, several formats of written information are made for people with intellectual disability and/or low literacy, such as Easy Read, Easy English and Plain Language. More understanding is however required about the decision-making behind their features, as it is not always clear which formats use which features or for what reasons.

Method

Twelve semi-structured interviews were conducted with leaders/senior staff in Australian accessible information provider organisations who make ‘easy’ information. Data were thematically-analysed, via a two-stage deductive-inductive process.

Results

The results show overlaps between different ‘easy’ information formats in Australia. ‘Easy’ information provider organisations make choices about what reading-level and images to use based how they see their envisioned audience using the information and what will make their envisioned audience feel recognised/empowered.

Conclusions

No single ‘easy’ format will suit everyone. ‘Easy’ information providers need to be more specific about the audience and associated features of their products.

ABSTRACT

Background

Psychological interventions need to be adapted for use with people with intellectual disabilities to ensure they are engaging, accessible and effective. Co-design allows the experiences of service users and stakeholders to actively shape and develop interventions, to ensure their accessibility.

Method

An adapted model of Experience Based Co-Design (EBCD) was used to co-develop a novel, mental imagery-based psychological intervention for people with mild to moderate intellectual disabilities and anxiety. Involvement in EBCD was evaluated for people with intellectual disabilities and stakeholders using both quantitative and qualitative methods.

Results

Numerous concrete and specific intervention adaptations arose and were implemented. Our findings indicated that all participants were able to engage fully with EBCD, and that participants found the process a positive experience.

Conclusions

EBCD has likely resulted in a more accessible and engaging intervention which can be now tested within a larger study.

ABSTRACT

Background

Advancements in medicine have increased the life expectancy of the people with profound intellectual and multiple disabilities. The hypothesis is that as parents get older, they worry about no longer being there for their child. This paper explores the extent to which the experiences of older parents may differ from that of younger parents.

Method

The participants were parents of people included in the French EVAL-PLH cohort. Psychological status, quality of life and coping were compared between (i) parents of the youngest persons (< 20 years) versus parents of the oldest persons (≥ 35 years); (ii) youngest (< 45 years) versus oldest parents (≥ 55 years).

Results

Compared with the youngest parents, the oldest parents did not differ in anxiety–mood disorders, quality of life or coping strategies used.

Conclusion

We did not confirm that ageing generates psychological changes for parents. Future qualitative studies should deeply examine this underexplored issue.

Trial Registration: Clinical trial number: NCT02400528

ABSTRACT

Background

This study investigates the healthcare needs and experiences of adults with intellectual disabilities, focusing on identifying areas for improvement. Its innovation lies in including individuals with intellectual disabilities as co-researchers in the research process.

Method

Thematic analysis was performed on five focus groups with 30 participants, exploring access to healthcare. Three co-researchers played active roles in reviewing the interview, recruitment, facilitation and co-analysis of results.

Results

Three types of specific needs emerged: communication, relational and support needs, as well as challenges in empowerment and shortcomings in the skills of professionals.

Conclusions

Intervention programmes aimed at training doctors and healthcare professionals should consider the specific difficulties and needs of people with intellectual disability, and their input should be prioritised in the design of these interventions.

ABSTRACT

Background

People with intellectual disabilities are rarely involved in end-of-life decisions. This study investigated and further developed approaches and resources to enable inclusive end-of-life care planning.

Methods

A multi-centre, multi-method four-phase study, involving 195 researchers, participants, advisors and co-design members, including 36 people with intellectual disabilities: (i) evidence review; (ii) stakeholder focus groups; (iii) Experience-Based Co-Design and (iv) testing of co-designed resources.

Results

There was little empirical evidence regarding the efficacy of existing resources. Focus group participants signalled overwhelming support for inclusive end-of-life care planning but notable variance around where/what/when/who/how. The co-design group developed a toolkit of existing and new resources. Feedback from toolkit testers was positive but barriers to staff engagement through the testing period were noted.

Conclusions

Flexible, creative and interactive approaches that open up conversations are the building blocks for inclusive end-of-life care planning. Barriers include lack of staff confidence, time and resources and a death avoidance culture.

ABSTRACT

Background

Children with severe developmental disabilities are frequently excluded from research, and little is known about their quality of life (QoL). Using a mixed-methods approach, this study examined relationships between school factors and QoL for these children and their families.

Method

171 parents of children with severe developmental disabilities completed questionnaires. Hierarchical regression analyses were performed examining predictors of child and family QoL. Of the 171 parents, 123 responded to an open-ended question about their children's school experiences, and responses were analysed qualitatively.

Results

Significant predictors of QoL included challenging behaviours, diagnoses, parent self-efficacy, social support and (importantly) school satisfaction. Seven themes related to school experiences were identified qualitatively.

Conclusion

Many factors contribute to QoL. School has a significant influence on children and their parents and families. Different children have different strengths and difficulties, and school systems need to work with parents to optimise outcomes.

ABSTRACT

Background

Young adults with intellectual and/or developmental disabilities lack access to mental health supports. Peer-delivered services may fill this gap. We adapted a theory-driven and evidence-based peer mentoring intervention for virtual-delivery and investigated its acceptability and participants' preliminary response.

Methods

Twelve young adults with intellectual and/or developmental disabilities participated in the 16-week intervention and completed outcome measures at pre-mentoring, post-mentoring and 1-month follow-up. To evaluate acceptability, participants completed interviews and a survey. Preliminary response was measured with the Alexithymia Questionnaire for Children and PROMIS short forms (Self-efficacy for Managing Emotions, Anxiety, and Physical Stress).

Results

Participants felt emotionally supported, increased self-understanding, and learned to use coping strategies. Participants reported improvements in alexithymia, self-efficacy for managing emotions and anxiety; no changes were observed for physical stress symptoms.

Conclusions

Participants were satisfied with peer mentoring and data suggest it may have promise to support development of skills that support mental health outcomes.