Journal of Applied Research in Intellectual Disabilities最新文献

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.

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.

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.

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.

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.

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

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.

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.

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.

Background

Negative mental health implications of menopause found in the general population, combined with high rates of mental health conditions found in women with intellectual disabilities, provide rationale to examine the existing literature to determine the impact of menopause on women with intellectual disabilities.

Methods

The review was conducted using scoping review methodology by Arksey and O'Malley. A systematic search was conducted across multiple databases. Relevant articles were screened according to inclusion/exclusion criteria. Braun and Clarke's thematic analysis was utilised to identify themes.

Results

After screening, eight articles satisfied the inclusion/exclusion criteria, and after thematic analysis, themes found were: changes in mood, lack of reporting of psychological symptoms and difficulty attributing psychological symptoms to menopause.

Conclusions

Findings indicate the paucity of literature and the lack of attention paid to examining the impact of menopause on the experiences and mental health of women with intellectual disabilities.