The Lived Experience of People with Mental Health and Substance Misuse Problems: Dimensions of Belonging

Introduction: People with co-occurring mental health and substance misuse problems are among the most excluded in society. A need to feel connected to others has been articulated in the occupational science literature although the concept of belonging itself has not been extensively explored within this paradigm. This paper reports findings from research that explored the meaning and experience of belonging for four people living with dual diagnosis in the United Kingdom. Method: Researchers employed an interpretative phenomenological approach to the study. Four semi-structured interviews were carried out. The interviews were guided by questions around the meaning of belonging, barriers to belonging and how belonging and not belonging impacted on participants’ lives. Data analysis facilitated the identification of themes across individual accounts and enabled comparisons. Findings: Data analysis identified four themes – belonging in family, belonging in place, embodied understandings of belonging and barriers to belonging. Conclusion: The findings add further insights into the mutable nature of belonging. A link between sense of belonging and attachment theory has been proposed, along with a way to understand the changeable and dependent nature of belonging through ‘dimensions of belonging’.

Service user perspectives on palliative care education for health and social care professionals supporting people with learning disabilities

Background and objectives
Evidence from European and American studies indicates limited referrals of people with learning (intellectual) disabilities to palliative care services. Although professionals’ perceptions of their training needs in this area have been studied, the perceptions of people with learning disabilities and family carers are not known. This study aimed to elicit the views of people with learning disabilities, and their family carers concerning palliative care, to inform healthcare professional education and training.

Methods
A qualitative, exploratory design was used. A total of 17 people with learning disabilities were recruited to two focus groups which took place within an advocacy network. Additionally, three family carers of someone with a learning disability, requiring palliative care, and two family carers who had been bereaved recently were also interviewed.

Results
Combined data identified the perceived learning needs for healthcare professionals. Three subthemes emerged: ‘information and preparation’, ‘provision of care’ and ‘family-centred care’.

Conclusions
This study shows that people with learning disabilities can have conversations about death and dying, and their preferred end-of-life care, but require information that they can understand. They also need to have people around familiar to them and with them. Healthcare professionals require skills and knowledge to effectively provide palliative care for people with learning disabilities and should also work in partnership with their family carers who have expertise from their long-term caring role. These findings have implications for educators and clinicians.

Supporting and maximizing communication between individuals with intellectual disabilities and health care providers

The goal of the present study was to examine the barriers to access in health services faced by individuals with intellectual disabilities (ID), as well as the nature of communication between people with ID and those who are directly involved in supporting their health and well being. The study included in-depth interviews with five adults who have been identified as having ID and are supported by a community agency, five community agency support staff and four physicians who are specialists in supporting people who have ID. A qualitative content analysis approach facilitated the comparative exploration of key themes that each participant group saw as positive or negative influences on health care access and on effective health care communication. Themes drawn from the findings emphasize the unique roles each of these groups plays within the dialogical framework of the health care encounter. Of particular importance to informants was the issue of people with ID being seen as full participants in their own health care who, like all people, are unique individuals and not simply members of an identified or marginalized group. Participants across groups emphasized the need for the health care recipient to be known as an individual who is an expert in her/his own health and well being and, therefore, entitled to full participation with the support of but not control by others.

An analysis of the systemic aspects of rights training for people with intellectual disabilities

Individuals with intellectual disabilities (ID) as a group have been subject to abuse. Individuals with ID need to be made aware of their rights. The 3Rs: Rights, Respect and Responsibility Human Rights Project is promoting rights awareness in individuals with ID, their caregivers and family members. To be effeCtive, abuse prevention must include support from the whole organization and its processes. This research evaluated the impact of the 3Rs initiative on the organization. It focused particularly on descriptions of organizational change perceived by full-time staff and managers in response to the initiation of the 3Rs Project. Behavioural interviews were conducted and a thematic analysis was used to describe changes in the organizational culture and behavioural mechanisms maintaining these changes. Systemic barriers to change were also explored. The results indicate that the Association is effectively implementing and supporting the rights-based philosophy.

Teaching persons with intellectual disabilities and limited receptive and expressive communication how to recognize and assert their human rights

Persons with intellectual disabilities (ID) are far more likely to be abused than the general population, but there is little research on teaching people with ID about their rights. The goal of this study was to teach four participants with ID and limited communication abilities about their human rights by training them on specific rights topics. The training program included icebreaker activities, instruction on rights concepts, watching and answering questions about videotaped scenarios of rights restrictions, watching and answering questions about role pl ay scenarios of rights restrictions, and responding to brief, low risk in situ rights restrictions imposed by the researchers. Participant performance did not improve significantly or consistently from baseline to training on the questions asked about the videotaped or the role play scenarios, but two of three participants demonstrated defmite improvements in responding to in situ rights restrictions.

Association of anticholinergic burden with adverse effects in older people with intellectual disabilities:an observational cross-sectional study

BACKGROUND: No studies to date have investigated cumulative anticholinergic exposure and its effects in adults with intellectual disabilities. AIMS: To determine the cumulative exposure to anticholinergics and the factors associated with high exposure. METHOD: A modified Anticholinergic Cognitive Burden (ACB) scale score was calculated for a representative cohort of 736 people over 40 years old with intellectual disabilities, and associations with demographic and clinical factors assessed. RESULTS: Age over 65 years was associated with higher exposure (ACB 1-4 odds ratio (OR) = 3.28, 95% CI 1.49-7.28, ACB 5+ OR = 3.08, 95% CI 1.20-7.63), as was a mental health condition (ACB 1-4 OR = 9.79, 95% CI 5.63-17.02, ACB 5+ OR = 23.74, 95% CI 12.29-45.83). Daytime drowsiness was associated with higher ACB (P<0.001) and chronic constipation reported more frequently (26.6% ACB 5+ v. 7.5% ACB 0, P<0.001). CONCLUSIONS: Older people with intellectual disabilities and with mental health conditions were exposed to high anticholinergic burden. This was associated with daytime dozing and constipation.

People with intellectual disabilities: promoting quality end of life care

Background: Internationally concerns have been highlighted about the quality of palliative care that people with intellectual disability receive. It has also been evidenced that people with intellectual disabilities are seldom referred to hospice and palliative care services. 

Aims: This study aimed to explore the experience of health and social care professionals in providing palliative care to people with intellectual disabilities. 

Methods An exploratory, qualitative design was used. A purposive sample of thirty health and social care professionals, working in intellectual disability and palliative care services, who had provided end-of-life care to adults with intellectual disabilities, were recruited to the study following informed consent. They were asked to reflect on a case scenario of a person with intellectual disability to whom they had provided end of life care. A semi-structured interview technique, with open questions and prompts, was used to explore their experiences and insights. The narrative from the case scenarios were content analysed using a recognised framework. 

Results: Three themes emerged from the data within the case scenarios: Identifying end of life care needs, meeting support needs and empowerment in partnership. Examples of good practice and issues in practice were apparent. 

Conclusion/ Discussion: This study contributes to the developing international evidence base to enhance end of life care for people with intellectual disabilities and provides further insights into this area of practice. Funder: HSC Research and Development Doctoral Fellowship Scheme

Individuals with mental disabilities: perceptions of work limitations

This research investigates the perceptions that individuals with mental illnesses have about the employment experience as a whole. Survey data from 72 respondents with mental disabilities were used to identify areas of perceived work limitations. Comparisons regarding employee work performance were made between eleven individuals with mental disabilities and their supervisors. Functional limitations identified by respondents with mental disabilities and the characteristic symptoms set forth in the Diagnostic and Statistical Manual of Mental Disorders were compared. Overall findings showed that individuals with mental disabilities in this study had problems in the areas of judgment, initiative, interacting and rapport with co-workers and supervisors, frustration tolerance and coping with job stress, and adapting to changes at work. Comparison of identified work task difficulties with diagnostic criteria indicate active symptomatology to have an effect on job performance. Recommendations regarding occupational therapy assessment approaches and roles to facilitate ADA implementation are presented.

Deinstitutionalization and community inclusion of individuals with intellectual disabilities in Ontario : a case analysis

In the last few decades, there have been significant changes in the way people with intellectual disabilities (ID) live in many countries around the world. Large isolated institutions have been replaced by community-based housing. This study examined the deinstitutionalization process in Ontario and it's effects on the lives of three individuals with ID. A case analysis approach was used allowing for in depth evaluation of the quality of life of these participants following their discharge with a focus on family involvement, community engagement, and choice making. A discrepancy analysis between the Essential Elements Plan (EEP), constructed when they were entering the community placement, and the current living arrangements was also done. The results of this study suggested that with community living comes improvements in family interactions, community engagement, and decision-making. However, these improvements were found to be minimal. Also, little discrepancy was found between the EEPs and their actual placements.

The relationship between place BANA reactivity and clinical parameters in subjects with mental disabilities

The purpose of the present investigation was to determine whether subjects institutionalized with mental retardation have a relationship between periodontal clinical parameters and the presence of the BANA-positive periodontal pathogens Porphyromonas gingivalis, Treponema denticola, and Bacteroides forsythus in their subgingival plaques. Fifty institutionalized subjects (25 patients with Down syndrome and 25 subjects with mental retardation) were matched with respect to age and sex. Periodontal clinical parameters (Bleeding on Probing, BOP; Papillary Bleeding Score, PBS; and Probing Depth, PD) were obtained from 6 reference teeth (3, 8, 14, 19, 24, 30). In addition, subgingival plaque samples taken from the same 6 teeth were analyzed for the presence of the BANA-positive species, by means of the chairside BANA test. In both the patients with Down syndrome and the group with mental retardation, the presence of BANA-positive plaques was significantly associated with bleeding on probing (p < 0.05) and increased probing depth (p < 0.01, Chisquare). Analysis of these data indicated that the BANA test could be used in combination with clinical criteria to diagnose a periodontopathy anaerobic Infection in institutionalized subjects.

People with psychiatric disabilities, employment, and the Americans with Disabilities Act : turning policy into practice : report from the Center for Mental Health Services ADA Roundtable, January 25-26, 1995 /

"The report ... summarizes the major points of discussion at the meeting as well as integrating other pertinent information"--P. iii.

Digital technologies and musical participation for people with intellectual disabilities

Research on the aspirations of people with intellectual disabilities documents the importance of alternative zones of inclusion where they can assert their own definitions of ability and normality. This stands in contrast to assumptions concerning technology and disability that position technology as ‘normalising’ the disabled body. This paper reports on the role of a digital music jamming tool in providing access to creative practice by people with intellectual disabilities. The tool contributed to the development of a spatio-temporal zone to enable aesthetic agency within and beyond the contexts of deinstitutionalised care. The research identifies the interactions among tools, individuals and groups that facilitated participants’ agency in shaping the form of musical practice. Further, we document the properties of emergent interaction - supported by a tool oriented to enabling music improvisation - as potentially resisting assumptions regarding normalisation.

Specialist versus generic models of psychiatry training and service provision for people with intellectual disabilities

Background  Models of service provision and professional training differ between countries. This study aims to investigate a specialist intellectual disabilities model and a generic mental health model, specifically comparing psychiatrists’ knowledge and competencies, and service quality and accessibility in meeting the mental health needs of people with intellectual disabilities. Method  Data were collected from consultant and trainee psychiatrists within a specialist intellectual disabilities model (UK) and a generic mental health model (Australia). Results  The sample sizes were 294 (UK) and 205 (Australia). Statistically significant differences were found, with UK participants having positive views about the specialist intellectual disabilities service model they worked within, demonstrating flexible and accessible working practices and service provision, responsive to the range of mental health needs of the population with intellectual disabilities, and providing a wide range of treatments and supports. The UK participants were knowledgeable, well trained and confident in their work. They wanted to work with people with intellectual disabilities. In all of these areas, the converse was found from the Australian generic mental health service model. Conclusions  The specialist intellectual disabilities model of service provision and training has advantages over the generic mental health model.

Discovering an Untapped Resource: Recruiting, Hiring, and Promoting People with Cognitive Disabilities.

Sections to the Paper include the following: America's Shrinking Labor Force, People with Cognitive Disabilities: an Untapped Labor Source, Focus, Initiative, Understand, Enhance.