Leadership in intellectual disability practice: design, development, and evaluation of a programme to support practice.

BACKGROUND: Intellectual disability services have and continue to experience changes in service provision. This has an implication for leadership in practice as the quality of leadership has a direct influence on staff practice and care provided. AIM: To design, deliver, and evaluate a leadership programme for nurse and social care managers in Ireland. DESIGN: An accredited programme was designed based on evidence from literature, practice, and national expertise. A cross-sectional survey was used to collect information on the attitudes and behaviour of participants before commencing and after completing the programme. Data from the questionnaires were analysed using SPSS and open-ended questions were analysed using content analysis. SETTING: Intellectual disability services. PARTICIPANTS: 102 participants completed the programme and survey. METHODS: Pre-post survey and reported using the CROSS guidelines. RESULTS: Participants' expectations were rated highly, and all items scored higher in the post-survey. Qualitative data was overall positive regarding opportunities for more time to work through each aspect of the programme. The key learning was through the forum day where participants shared their group projects. CONCLUSIONS: Overall, the programme was positively evaluated and through engaging with the programme participants' perceptions moved from seeing leadership as mostly task-oriented to realising that qualities such as good communication, person-centredness, advocacy, supporting, role modelling, and empowering are key to leadership.

Fathers' involvement in raising children with intellectual disabilities: Mothers' ratings of the contribution of their spouses.

BACKGROUND: Intellectual disability (ID) is a lifelong condition characterized by individuals' inability to perform cognitive tasks and participate in daily living activities. While parenting children with ID has been reported to be demanding, studies draw mainly on mothers. In contexts such as the United Arab Emirates (UAE), there is little literature on fathers' involvement in raising children with IDs. OBJECTIVES: The purpose of this study was to explore, from the perspectives of mothers, the extent of fathers' involvement in raising children with ID in the UAE. METHODS: One hundred and fifty-eight (N = 158) mothers with children with ID completed the fathers' involvement in disability and rehabilitation scale. Mothers who had enrolled their children with ID in special schools or receiving services at rehabilitation centres were invited to participate in this study. The data were subjected to the following analyses: mean computation, multivariate analysis of variance, hierarchical regression, and moderation analysis. RESULTS: The results showed high fatherly support, participation in training, and contribution to the development of their children with ID. However, the mothers' ratings showed the fathers' ambivalence toward parenting children with ID. A relationship was found between attitude and support, as well as marital status and the educational level of mothers, providing insight into the involvement of fathers. CONCLUSION: The study recommends training programs aimed at improving the attitudes of fathers toward raising children with ID and other study implications.

Measurement tools for behaviours that challenge and behavioural function in people with intellectual disability: A systematic review and meta-analysis of internal consistency, inter-rater reliability, and test-retest reliability.

Behaviours that challenge (BtC) are common in people with intellectual disability (ID) and associated with negative long-term outcomes. Reliable characterisation of BtC and behavioural function is integral to person-centred interventions. This systematic review and meta-analytic study quantitatively synthesised the evidence-base for the internal consistency, inter-rater reliability, and test-retest reliability of measures of BtC and behavioural function in people with ID (PROSPERO: CRD42021239042). Web of Science, Embase, PsycINFO and MEDLINE were searched from inception to March 2024. Retrieved records (n = 3691) were screened independently to identify studies assessing eligible measurement properties in people with ID. Data extracted from 83 studies, across 29 measures, were synthesised in a series of random-effects meta-analyses. Subgroup analyses assessed the influence of methodological quality and study-level characteristics on pooled estimates. COSMIN criteria were used to evaluate the measurement properties of each measure. Pooled estimates ranged across measures: internal consistency (0.41-0.97), inter-rater reliability (0.29-0.93) and test-retest reliability (0.52-0.98). The quantity and quality of evidence varied substantially across measures; evidence was frequently unavailable or limited to a single study. Based on current evidence, candidate measures with the most evidence for internal consistency and reliability are discussed; however, continued assessment of measurement properties in ID populations is a key priority.

How do people with intellectual disabilities understand friendship? A systematic meta-synthesis.

BACKGROUND: Previous systematic reviews of the relationships of people with intellectual disabilities have included consideration of intimate relationships. In this paper, we report a systematic review of papers describing friendship only. METHOD: A systematic qualitative meta-synthesis of the research exploring experiences of friendship as reported by people with intellectual disabilities. RESULTS: Seven papers met the inclusion criteria for analysis. Three superordinate themes were identified. (1) Reciprocity, 'Someone who helps me, and I help them'. (2) The building blocks of friendships, 'I can tell her some secrets'. (3) Managing friendship difficulties, 'In real life it's much harder'. CONCLUSION: People with intellectual disabilities value friendship and actively engage in reciprocal exchanges. We explore the strengths and limitations of current research, clinical implications, and directions for future research.

Primary mental healthcare for adults with mild intellectual disabilities: Patients' perspectives.

BACKGROUND: People with mild intellectual disabilities (MID) experience more mental health (MH) problems than the general population but often do not receive appropriate primary MH care. Primary MH care is essential in integrative MH care and, therefore, demands high quality. To improve primary MH care for this patient group, account must be taken of the experiences of people with MID. So far, their perspectives have been largely absent from primary MH care research. OBJECTIVES: To explore patients' experiences, needs, and suggestions for improvement regarding primary MH care for people with MID. METHODS: Qualitative study among adults with MID who visited their GP with MH problems in the previous 12 months. Semi-structured interviews were conducted using a guide based on Person-Centred Primary Care Measures. Transcripts were analysed thematically. RESULTS: The 11 interviews that we conducted revealed four themes. The first theme, cumulative vulnerability, describes the vulnerability - instigated by the MID and reinforced by MH problems - experienced on a GP visit. The other themes (needs regarding the GP, needs regarding the network, self-determination) arise from this vulnerability. CONCLUSION: People with both MID and MH problems are extra vulnerable in primary care but desire self-determination regarding their MH care trajectory. This requires investment in a good GP-patient relationship and the organisation of additional support to meet these patients' needs, for which collaborative care with the patient, the patient's network, and other (care) professionals is of utmost importance.

People with mild intellectual disabilities (MID) feel more vulnerable visiting their GP with mental health (MH) problems than with somatic problemsPatients with MH problems report additional needs and expectations regarding their care and support networkGPs face challenges in coordinating care for patients with both MID and MH problems.

A complex systems perspective on chronic aggression and self-injury: case study of a woman with mild intellectual disability and borderline personality disorder.

BACKGROUND: Challenging behaviors like aggression and self-injury are dangerous for clients and staff in residential care. These behaviors are not well understood and therefore often labeled as "complex". Yet it remains vague what this supposed complexity entails at the individual level. This case-study used a three-step mixed-methods analytical strategy, inspired by complex systems theory. First, we construed a holistic summary of relevant factors in her daily life. Second, we described her challenging behavioral trajectory by identifying stable phases. Third, instability and extraordinary events in her environment were evaluated as potential change-inducing mechanisms between different phases. CASE PRESENTATION: A woman, living at a residential facility, diagnosed with mild intellectual disability and borderline personality disorder, who shows a chronic pattern of aggressive and self-injurious incidents. She used ecological momentary assessments to self-rate challenging behaviors daily for 560 days. CONCLUSIONS: A qualitative summary of caretaker records revealed many internal and environmental factors relevant to her daily life. Her clinician narrowed these down to 11 staff hypothesized risk- and protective factors, such as reliving trauma, experiencing pain, receiving medical care or compliments. Coercive measures increased the chance of challenging behavior the day after and psychological therapy sessions decreased the chance of self-injury the day after. The majority of contemporaneous and lagged associations between these 11 factors and self-reported challenging behaviors were non-significant, indicating that challenging behaviors are not governed by mono-causal if-then relations, speaking to its complex nature. Despite this complexity there were patterns in the temporal ordering of incidents. Aggression and self-injury occurred on respectively 13% and 50% of the 560 days. On this timeline 11 distinct stable phases were identified that alternated between four unique states: high levels of aggression and self-injury, average aggression and self-injury, low aggression and self-injury, and low aggression with high self-injury. Eight out of ten transitions between phases were triggered by extraordinary events in her environment, or preceded by increased fluctuations in her self-ratings, or a combination of these two. Desirable patterns emerged more often and were less easily malleable, indicating that when she experiences bad times, keeping in mind that better times lie ahead is hopeful and realistic.

A Research Agenda to Support Families of People With Intellectual and Developmental Disabilities With Intersectional Identities.

Family members provide significant practical and emotional support to people with intellectual and developmental disabilities (IDD) across the lifespan. In September 2022, the State of the Science Conference on Community Living: Engaging Persons With Intellectual and Developmental Disabilities From Underserved Racial, Ethnic, Linguistic, and Cultural Groups in Research was held. This article summarizes the efforts of the workgroup that developed research goals related to supporting families of people with IDD. The focus was on families with intersectional identities and minoritized communities. Recommended areas of future research include exploratory research to better understand the experiences of these families, perspectives of families with intersectional identities about the formal support system, funding for family support and services, and inclusive research strategies.

Mid-life social participation in people with intellectual disability: The 1958 British birth cohort study.

BACKGROUND: Low social participation is a potentially modifiable risk factor for cognitive deterioration in the general population and related to lower quality of life (QoL). We aimed to find out whether social participation is linked to cognitive deterioration and QoL for people with borderline intellectual functioning and mild intellectual disability. METHOD: We used data from the National Child Development Study, consisting of people born during one week in 1958, to compare midlife social participation in people with mild intellectual disability, borderline intellectual functioning, and without intellectual impairment. We defined social participation as 1. confiding/emotional support from the closest person and social network contact frequency at age 44, and 2. confiding relationships with anyone at age 50. We then assessed the extent to which social participation mediated the association between childhood intellectual functioning and cognition and QoL at age 50. RESULTS: 14,094 participants completed cognitive tests at age 11. People with borderline intellectual functioning and mild intellectual disability had more social contact with relatives and confiding/emotional support from their closest person, but fewer social contacts with friends and confiding relationships with anyone than those without intellectual disability. Having a confiding relationship partially mediated the association at age 50 between IQ and cognition (6.4%) and QoL (27.4%) for people with borderline intellectual functioning. CONCLUSION: We found adults with intellectual disability have positive family relationships but fewer other relationships. Even at the age of 50, confiding relationships may protect cognition for people with borderline intellectual functioning and are important for QoL.

Measurement Invariance in Intellectual and Developmental Disability Research.

Measurement invariance (MI) is a psychometric property of an instrument indicating the degree to which scores from an instrument are comparable across groups. In recent years, there has been a marked uptick in publications using MI in intellectual and developmental disability (IDD) samples. Our goal here is to provide an overview of why MI is important to IDD researchers and to describe some challenges to evaluating it, with an eye towards nudging our subfield into a more thoughtful and measured interpretation of studies using MI.

Improving Quality of Life and Reducing Behavioral Problems of People With Intellectual and Developmental Disabilities Through Deinstitutionalization.

ANTECEDENTS: People with intellectual and developmental disability (IDD) with extensive support needs are more likely to live in segregated and highly institutionalized environments. The aim of this study was to analyze changes in functioning and quality of life for people with IDD and extensive support needs after transitioning to ordinary homes in the community. METHOD: The sample included 54 adults with IDD and extensive support needs, who were assessed at three time points: before transition, six months later, and one year after transition. The Resident Choice Scale, San Martin Quality of Life Scale, Active Support Participation Measure, and the Behavior Problem section of the Inventory for Client and Agency Planning were administered. Partial least squares-structural equation modeling (PLS-SEM) and t-tests for repeated measures were carried out. RESULTS: There were significant improvements in decision-making, participation and independence in daily activities and quality of life, as well as a reduction in the presence and intensity of behavioral problems. CONCLUSIONS: The benefits found in this study support transformation processes towards more inclusive services and professional practices that foster people's rights and feeling of belonging to the community.

Adults With IDD in Supported Accommodation During COVID-19 Lockdown: The Families' Perspective.

The present study aims to understand and describe family caregivers' perceptions and experiences regarding contact and relationships with their adult relatives with intellectual and developmental disabilities (IDD) living in supported accommodation during the COVID-19 lockdown. A qualitative phenomenological approach was applied in which 19 Israeli family caregivers (parents and siblings) were interviewed. Inductive thematic analysis revealed themes at the microsystem level (the resident, the caregiver, and their relationship), and at the mesosystem level (the caregivers' interactions with service providers and other residents' families). The findings highlight the pivotal role of family caregivers in times of uncertainty and the need to develop explicit policies and mechanisms to facilitate family engagement in the residents' lives.

Caring for people with intellectual disabilities: Insights from a cross-sectional study among nursing students.

BACKGROUND: Caring for people with intellectual disabilities poses substantial challenges. Nursing students' emotions, thoughts, and behaviors during their education in the context of people with intellectual disabilities, remain relatively unexplored. OBJECTIVES: To examine nursing students' emotions, thoughts, competence, and expected professional behaviors in care provision for people with intellectual disabilities, as well as to identify factors associated with their expected professional behaviors with this population. DESIGN: A cross-sectional study using a closed self-report questionnaire and one open-ended question. SETTING: The largest academic nursing department in Israel. PARTICIPANTS: Of 245 sophomore nursing students, 177 agreed to participate (71.4 % response rate). METHODS: The study measured feelings, thoughts, competence, and expected professional behaviors in care provision for people with intellectual disabilities based on the Multidimensional Attitudes Scale. One open-ended question addressed how students believe their competence in caring for people with intellectual disabilities could be improved during their nursing studies. A hierarchical linear regression analysis was performed to investigate the contribution of emotions, thoughts, and competence to explaining expected behaviors in care provision. The significance of the model and the R2 were calculated. The open-ended question was analyzed by the constant comparative method. RESULTS: Negative emotions and thoughts (ß = -0.37, 95 % CI -0.47; -0.15 and ß = -0.33, 95 % CI -0.39; -0.13, respectively), along with positive emotions (ß = 0.25, 95 % CI 0.07;0.33), showed significant associations with expected professional behaviors. Qualitative analysis revealed three key themes: communication concern, knowledge gap, and curiosity. The findings of the open-ended question corroborate the quantitative findings. CONCLUSION: It is important to realize that in order to develop quality professional skills for caring for people with intellectual disability, nursing educators must adopt a deep discussion of negative emotions and thoughts with their students regarding people with intellectual disabilities. Ignoring these negative emotions and thoughts can exacerbate the neglect of people with intellectual disabilities' health needs.

Embracing authenticity and challenging norms: Including people with an intellectual disability as lecturers in third level intellectual disability nursing programmes.

UNDERREPRESENTATION OF VOICES FROM PEOPLE WITH INTELLECTUAL DISABILITY IN NURSE EDUCATION: In the Republic of Ireland and the United Kingdom, university level programmes for intellectual disability nurses have traditionally incorporated the perspectives of people with intellectual disabilities but have been delivered by non-disabled educators. Perspectives are interpreted through the lens of the non-disabled person, with the voices of people with intellectual disabilities rarely heard. AN ALTERNATIVE APPROACH: INCLUDING PEOPLE WITH INTELLECTUAL DISABILITY AS EDUCATORS: In this article, an alternative approach is proposed that addresses this problem by including individuals with intellectual disabilities as educators within university programmes. Such inclusion will benefit students, academics, and ultimately the individuals who will receive health and social care from these nurses. Many countries have seen legislative and policy changes promoting inclusion for people with an intellectual disability. These are welcomed, but if they are to have a meaningful impact, societal attitudes and perceptions towards people with intellectual disabilities must be challenged. Drawing upon the concepts of social reconstruction and the ideologies of Paulo Freire and John Dewey, we argue that education can catalyze societal transformation. By including individuals with intellectual disabilities as educators in undergraduate programmes, such as nursing, traditional hierarchies of educators can be challenged, and students can learn from experts with lived experiences. This approach fosters critical thinking, reflection, and the development of authentic and informed healthcare professionals. The experiences of a co-author with a lived experience of intellectual disability as an educator, highlights the positive impact of such inclusion on students' perspectives, understanding, and empathy.

A Settings and Systems Approach to Promoting the Health and Wellbeing of People with an Intellectual Disability.

Research has shown that people with an intellectual disability have higher rates of certain preventable health conditions and a higher rate of avoidable mortality relative to the general population. With respect to health behaviours, they also have lower levels of physical activity and poorer nutrition. Despite the increased health needs, this population cohort is less likely to have the opportunity to participate in health promotion programs. The interventions that have been delivered are programmatic and individual in focus and have lacked a broader ecological and settings focus, which makes them very difficult to scale. Health promotion programs designed for the general population, such as lifestyle campaigns, rarely reach people with an intellectual disability. This increases the importance of ensuring that the settings in which they live and engage with are as health promoting as possible. Interventions have been particularly absent in the workplace for people with an intellectual disability. This paper highlights gaps in a settings-and-systems-based approach to promoting the health and wellbeing of people with an intellectual disability, particularly with respect to workplace health promotion. The paper concludes with recommendations for a systems approach that integrates approaches across multiple settings to better promote the health of this population cohort.

Mental health, challenging behaviour, diagnosis, and access to employment for people with intellectual disabilities in Norway.

BACKGROUND: Studies have found that presence of challenging behaviours and mental health problems limits employment for people with intellectual disabilities. This study investigates the associations between age, gender, living condition, level of intellectual disability, diagnoses, behaviour, mental health, and employment in adults with intellectual disabilities in Norway. METHOD: A cross-sectional community-based survey including 214 adult participants (56% men) with intellectual disabilities. RESULTS: In our sample, 25% had no organised day activity, 27% attended non-work day care, 19% attended sheltered employment, or day care with production, without pay and 29% worked in paid sheltered employment. One participant attended mainstream employment. Moderate and severe/profound level of intellectual disability, possible organic condition and irritability significantly reduced the odds of employment (paid and unpaid). CONCLUSION: Findings suggest unequal access to the sheltered employment that was meant to be inclusive. More individualised evaluation of prerequisites is suggested to further facilitate employment for this group.

"Help me to decide": A study of human rights-based supported decision making with persons with intellectual disabilities.

Decision making is the basis for individual autonomy and societal participation. To support persons' human right to make life decisions, the model of supported decision making (SDM) has evolved and complies with Article 12 of the United Nations Convention on the Human Rights of Persons with Disabilities. Models for implementing SDM and outcomes achieved by applying SDM in community settings remain insufficiently explored. This study used a human rights perspective with participatory, qualitative research methods to investigate environmental conditions and social support measures that enabled persons with intellectual disabilities (ID) to make and implement their own decisions. Data gathered were 6 months of field notes about implementing SDM in a L'Arche day activity program with 26 adults with ID, with opinions and drawings illustrating persons' decision making. All data were analyzed thematically. As a result of using the SDM intervention, persons with ID became more expressive, able to discuss and debate options, participated in organizational and municipal decision making, and expressed "joy" and feeling "more like a human." Staff supporters found SDM fulfilling and noticed it increased the sense of ownership persons with ID experienced in individual and group meetings. An organizational environment that respects human dignity, supports sustained relationships between persons with ID and decision supporters, individualizes SDM depending on how persons can communicate, and encourages staff self-reflection about prejudices and positionality is essential for implementing SDM with persons with ID. SDM processes shift oppressive social narratives and policies in the direction of a social, relational model of the decision-making capacities and competencies of persons with ID. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

A comprehensive systematic literature review of the burden of illness of Lennox-Gastaut syndrome on patients, caregivers, and society.

Fully elucidating the burden that Lennox-Gastaut syndrome (LGS) places on individuals with the disease and their caregivers is critical to improving outcomes and quality of life (QoL). This systematic literature review evaluated the global burden of illness of LGS, including clinical symptom burden, care requirements, QoL, comorbidities, caregiver burden, economic burden, and treatment burden (PROSPERO ID: CRD42022317413). MEDLINE, Embase, and the Cochrane Library were searched for articles that met predetermined criteria. After screening 1442 deduplicated articles and supplementary manual searches, 113 articles were included for review. A high clinical symptom burden of LGS was identified, with high seizure frequency and nonseizure symptoms (including developmental delay and intellectual disability) leading to low QoL and substantial care requirements for individuals with LGS, with the latter including daily function assistance for mobility, eating, and toileting. Multiple comorbidities were identified, with intellectual disorders having the highest prevalence. Although based on few studies, a high caregiver burden was also identified, which was associated with physical problems (including fatigue and sleep disturbances), social isolation, poor mental health, and financial difficulties. Most economic analyses focused on the high direct costs of LGS, which arose predominantly from medically treated seizure events, inpatient costs, and medication requirements. Pharmacoresistance was common, and many individuals required polytherapy and treatment changes over time. Few studies focused on the humanistic burden. Quality concerns were noted for sample representativeness, disease and outcome measures, and reporting clarity. In summary, a high burden of LGS on individuals, caregivers, and health care systems was identified, which may be alleviated by reducing the clinical symptom burden. These findings highlight the need for a greater understanding of and better definitions for the broad spectrum of LGS symptoms and development of treatments to alleviate nonseizure symptoms.

"How will we cope?" Couples With Intellectual Disability Where One Partner Has a Diagnosis of Dementia.

BACKGROUND AND OBJECTIVES: People with intellectual disability are at increased risk of dementia at an earlier age. This is the first study to explore experiences of couples with an intellectual disability when one partner has dementia. RESEARCH DESIGN AND METHODS: Four people with intellectual disability whose partner had dementia and one partner who had both an intellectual disability and dementia took part in narrative life story interviews. One of the interviews was conducted as a couple giving direct perspectives from 4 couples overall. Additionally, 13 semistructured interviews were conducted with 9 social care professionals and 4 family members. This provided perspectives of the relationships of a further 4 couples, which collectively led to data on 8 couples. RESULTS: The emotional impact of a dementia diagnosis, planning for the future, and fear of separation was noted by couples with intellectual disability. Partners took on caring roles thus challenging views of being solely care-receivers. Families spoke of commitment and longevity in relationships, whilst social care staff highlighted how their own information needs changed recognizing the importance of intellectual disability and dementia-specific knowledge. DISCUSSION AND IMPLICATIONS: Couples with intellectual disability continue to enjoy intimate relationships into later life and will face common conditions in older age including dementia. Those who provide support need to ensure that they are sensitive to the previous experience and life story of each couple and have specific knowledge of how dementia can affect people with intellectual disability.

Emotion recognition and social functioning in individuals with autism spectrum condition and intellectual disability.

OBJECTIVE: Most previous studies have examined emotion recognition in autism spectrum condition (ASC) without intellectual disability (ID). However, ASC and ID co-occur to a high degree. The main aims of the study were to examine emotion recognition in individuals with ASC and co-occurring intellectual disability (ASC-ID) as compared to individuals with ID alone, and to investigate the relationship between emotion recognition and social functioning. METHODS: The sample consisted of 30 adult participants with ASC-ID and a comparison group of 29 participants with ID. Emotion recognition was assessed by the facial emotions test, while. social functioning was assessed by the social responsiveness scale-second edition (SRS-2). RESULTS: The accuracy of emotion recognition was significantly lower in individuals with ASC-ID compared to the control group with ID, especially when it came to identifying angry and fearful emotions. Participants with ASC-ID exhibited more pronounced difficulties in social functioning compared to those with ID, and there was a significant negative correlation between emotion recognition and social functioning. However, emotion recognition accounted for only 8% of the variability observed in social functioning. CONCLUSION: Our data indicate severe difficulties in the social-perceptual domain and in everyday social functioning in individuals with ASC-ID.

Making physical activity fun and accessible to adults with intellectual disabilities: A pilot study of a gamification intervention.

BACKGROUND: Only about 9% of individuals with intellectual disabilities reach the government's physical activity (PA) recommendations. Combining gamification and technology seems particularly promising in overcoming personal and environmental barriers to PA participation. METHOD: Eighteen adults with varying levels of intellectual disabilities completed a pilot study to assess the initial effects of a cycling gamification intervention on levels of PA, fitness, psychosocial outcomes, and challenging behaviours. The study comprised three designs: pre-post single group, AB single-case, and qualitative. Social validity, implementation barriers and facilitators were also explored. RESULTS: Nearly all 18 participants cycled daily. Time and distance cycled daily increase during the intervention while a decrease in stereotyped behaviours was observed. Participants and staff found the intervention enjoyable and socially valid. CONCLUSIONS: Results of the multiple-design study suggest that gamification interventions may be a suitable, enjoyable, and promising way to contribute to PA participation of adults with intellectual disabilities.