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Before yesterdayWiley: Journal of Applied Research in Intellectual Disabilities: Table of Contents

Evaluating a Virtual Community‐of‐Practice as Implementation Strategy for the Needs Assessment Framework in Intellectual Disability Care: A Quasi‐Experimental Multi‐Methods Study

✇Wiley: Journal of Applied Research in Intellectual Disabilities: Table of Contents
By: Esther H. Bisschops， Noud Frielink， J. Clasien de Schipper， Carlo Schuengel， Petri J. C. M. Embregts
18 January 2025 at 11:48

ABSTRACT

Background

The Needs Assessment Framework (NAF) stimulates awareness of care staff to consider perspectives of clients with intellectual disabilities in decisions on involuntary care. We explored the effect of implementers' participation in a Virtual Community-of-Practice (VCoP) for designing implementation plans, on NAF implementation and staff awareness.

Method

A quasi-experimental design was used to compare implementation and awareness by care staff (n = 54) between organisations that implemented NAF with VCoP participation (N = 4) and organisations that implemented NAF as usual (N = 3). The ItFits toolkit work routine in the VCoP was qualitatively analysed to understand choices regarding implementation plans.

Results

No statistical differences in implementation and awareness among care staff were found between the intervention and control groups. Implementers evaluated collaboration on implementation and the ItFits toolkit as helpful.

Conclusions

Evaluation of implementation effectiveness and process are both needed to offer unique insights for iteratively changing daily practice around involuntary care.

‘It Feels Very Weird and Normal at the Same Time’: Sibling Perceptions of Their Relationships With an Autistic Brother or Sister With Complex Care Needs

✇Wiley: Journal of Applied Research in Intellectual Disabilities: Table of Contents
By: Louise Rixon， Richard P. Hastings， Hanna Kovshoff
16 January 2025 at 08:10

ABSTRACT

Background

The impact of having a disabled brother or sister on siblings' psychological well-being and sibling relationships has been the subject of several research studies. However, research which focuses on the relationship between siblings and their autistic brother or sister with an intellectual disability and complex care needs is rare. We explored siblings' views and experiences of their sibling relationship with their autistic brother or sister with complex care needs.

Method

Eleven children and early adolescents (4 male/7 female) between the ages of 8 and 14 years took part in semi-structured interviews with questions focussing on their relationship with their autistic brother or sister who had complex care needs. Reflexive thematic analysis was used as a guide to analyse the data.

Results

Four themes are presented: positive interactions bring joy, sibling conflict is driven by verbal interactions, behaviours may have different meanings for the sibling, perceptions of change in the sibling relationship.

Conclusions

The siblings of autistic brothers and sisters with an intellectual disability and complex care needs described warmth and positivity. Siblings of autistic children, who have complex care needs, deeply valued their interactions with their brother or sister despite reciprocity being on their terms. When autistic brothers and sisters had some functional spoken language, this often changed the context for the siblings relationship; perhaps leading to an increased chance of conflict or perceived negative experiences. These findings highlight the importance of understanding the individual meaning of these sibling relationships.

The Valemee Visual System Helps Reduce Risk for Chronic Illness by Promoting Physical Fitness, Self‐Efficacy and Independence in Adults With Intellectual Disabilities

✇Wiley: Journal of Applied Research in Intellectual Disabilities: Table of Contents
By: Anthony Dujmovic‐Bračak， Alisa D. Blazek， Emily M. Post， Jacqueline D. Goodway， Carmen B. Swain
14 January 2025 at 05:21

ABSTRACT

Introduction

Sedentary behaviour among individuals with intellectual disabilities, driven by barriers such as limited access to adapted programs and low self-efficacy, contributes to chronic health conditions. This study evaluates the effectiveness of the Valemee Visual System (VVS), a novel tool offering visual support and structured exercise programming, in improving physical fitness and promoting exercise independence in this population.

Methods

A repeated measures design was employed with an 8-week intervention involving 22 participants aged 22–44 with mild to moderate intellectual disabilities. The program utilised the VVS for total body fitness training.

Results

Participants demonstrated significant improvements in grip strength, sit-to-stand performance, bench press capacity, 400-m walk time, and flexibility. Self-efficacy increased, and reduced reliance on prompts indicated greater exercise independence and autonomy.

Conclusions

The VVS shows promise in enhancing physical fitness, accessibility, and adherence in adults with intellectual disabilities, supporting long-term health and reducing chronic disease risk.

‘I Don't Think I Have Ever Worked Harder on a Case’: Needs of Canadian Child Protection Workers and Parents With Intellectual Disabilities

✇Wiley: Journal of Applied Research in Intellectual Disabilities: Table of Contents
By: Munazza Tahir， Virginie Cobigo
14 January 2025 at 00:27

ABSTRACT

Background

The current literature has established that prejudice in child protection cases with parents with intellectual disabilities continues to persist. However, complexities of these cases are not well-understood from the perspective of child protection workers. This study aimed to identify the needs of child protection workers and their views on factors that influence supports for parents with intellectual disabilities.

Method

This qualitative study conducted semistructured interviews with child protection workers who have worked directly with parents with intellectual disabilities across five child protective agencies in three regions in Ontario, Canada (n = 11).

Results

Three major themes emerged after content analysis of interviews: (1) training and support needs of child protection workers; (2) key sources of support for parents; and (3) intersecting factors impacting decision-making.

Conclusion

Social service agencies continue to be fragmented and better coordination across agencies is needed to meet the cross-sectoral needs of parents with intellectual disabilities.

Expressing Sexuality in Silent and Weep: Experience of Chinese People With Intellectual Disabilities and Parents

✇Wiley: Journal of Applied Research in Intellectual Disabilities: Table of Contents
By: Angus Y. K. Lam， Matthew K. S. Yau， Richard C. Franklin， Peter A. Leggat
11 January 2025 at 08:00

ABSTRACT

Background

Sexual well-being significantly impacts the overall quality of life for individuals with and without intellectual disabilities. Notably, parents play a pivotal role in influencing their children's sexual development, and their attitudes towards this topic are shaped by Chinese sociocultural values.

Methods

This study employed Interpretative phenomenological analysis to explore the experiences and attitudes of five individuals with intellectual disabilities and seven parents/caregivers regarding the sexual needs of their adult offspring with intellectual disabilities.

Results

The findings revealed participants' experiences and concerns, often navigating the challenges posed by traditional Chinese cultural restrictions through responses characterised as ‘Silent’ (avoidance of discussion) and ‘Weep’ (deep-seated psycho-emotional burden).

Conclusions

This research emphasises the importance of a pluralistic society and advocates for promoting sexual autonomy among individuals with intellectual disabilities. The findings have implications for future practises and highlight the need for a more inclusive and compassionate approach to their sexual well-being.

“They Don't Understand People With Learning Disabilities”: Exploring the Experiences of People With Intellectual Disabilities Undergoing Welfare Assessments

✇Wiley: Journal of Applied Research in Intellectual Disabilities: Table of Contents
By: Bethan Ward， Ste Weatherhead， Beth Greenhill
8 January 2025 at 06:29

ABSTRACT

Background

The Welfare Reform Act (2012) has been criticised for harming claimants, particularly through functional assessments. Although many people with intellectual disabilities in the UK receive welfare benefits, their experiences of undergoing functional assessments are under-researched.

Method

Eight participants with intellectual disabilities were interviewed about experiences of welfare assessment. Transcripts were analysed qualitatively using interpretative phenomenological analysis.

Results

Analysis suggested five group experiential themes: ‘Living in fear: I was nervous and scared’; ‘The system is marginalising: Other people are better than me’; ‘Relationship with the assessor: His attitude fucking stunk’; ‘Others as a safe base: Someone there that you know, and you trust’; and ‘Responding with empowerment: That's where I really shined’.

Conclusions

People with intellectual disabilities experience functional assessments as scary and oppressive. Assessment reinforced the stigma associated with having an intellectual disability and, to a lesser extent, claiming benefits. Individual, structural and policy levels interventions are discussed.

Parental Experiences of Quality of Life When Caring for Their Children With Intellectual Disability: A Meta‐Aggregation Systematic Review

✇Wiley: Journal of Applied Research in Intellectual Disabilities: Table of Contents
By: Macey Barratt， Peter Lewis， Natalie Duckworth， Natasha Jojo， Viktorija Malecka， Signe Tomsone， Dita Rituma， Nathan J. Wilson
7 January 2025 at 06:50

ABSTRACT

Background

Parents of children with moderate to profound intellectual disabilities play a crucial role in providing direct care but often demonstrate heightened parental stress and reduced quality of life. This review explores perceived quality of life from the experiences of parents when caring for young and adult children.

Method

A qualitative systematic review following Joanna Briggs Institute meta-aggregation approach has been completed and reported according to PRISMA guidelines.

Findings

Seventeen qualitative studies were included. Three synthesised findings were identified: ‘Challenges and rewards of being a parent carer’, ‘The real cost of caregiver burden’ and ‘Surrendering self for duty – the mothers role’.

Conclusion

Parents of children with moderate to profound intellectual disabilities reported diminished quality of life for themselves and their families, experiencing increased physical and mental health issues associated with caregiving burdens. Future research is needed that determine what effective support systems and interventions are needed to alleviate parental caregiver burden.

The Sociodemographic Characteristics of Mothers With Intellectual Disability: A Review of Population‐Level Studies

✇Wiley: Journal of Applied Research in Intellectual Disabilities: Table of Contents
By: S. Collings， G. Hindmarsh， H. Wilkinson， G. Llewellyn
7 January 2025 at 01:48

ABSTRACT

Background

Population studies confirm mothers with intellectual disability have poorer antenatal outcomes than other mothers but less is known about any differences in sociodemographic characteristics between these groups.

Method

A systematic review of population-level studies on parents with intellectual disability was undertaken from January to August 2023. Seven electronic databases and references from two literature reviews were examined and 27 studies met inclusion criteria for the review.

Results

All studies reported on mothers and only one on fathers. Maternal age and socioeconomic status were most frequently reported; age in 26 studies and socioeconomic status in 23 studies. Most studies found mothers with intellectual disability were significantly younger (73%) and more disadvantaged (83%) than their peers.

Conclusions

Maternal intellectual disability co-occurs with established parenting risk factors in the general population. Social welfare programs must become disability-inclusive and population datasets should routinely include disability items. A knowledge gap remains in relation to fathers with intellectual disability.

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