Community participation and inclusion: People with disabilities defining their place

Disability-related public policy currently emphasises reducing the number of people experiencing exclusion from the spaces of the social and economic majority as being the pre-eminent indicator of inclusion. Twenty-eight adult, New Zealand vocational service users collaborated in a participatory action research project to develop shared understandings of community participation. Analysis of their narratives suggests that spatial indices of inclusion are quiet in potentially oppressive ways about the ways mainstream settings can be experienced by people with disabilities and quiet too about the alternative, less well sanctioned communities to which people with disabilities have always belonged. Participants identified five key attributes of place as important qualitative antecedents to a sense of community belonging. The potential of these attributes and other self-authored approaches to inclusion are explored as ways that people with disabilities can support the policy objective of effecting a transformation from disabling to inclusive communities.

Agency or Dependency?: The Mixed Peppers Theatre Arts Training Project for young people with disabilities

This article provides a reflection on my past practice as Creative Director of The Mixed Peppers Theatre Arts Training Programme. Drawing upon discourses of Disability Studies it considers how this ostensibly emancipatory project that sought to provide access to theatre activity for young people with physical disabilities living in Northern Ireland was flawed, and was eventually disbanded, partly due to a failure on the part of its non-disabled leadership to address imbalances of power in its relationship with its young disabled constituency. The article is framed within a survey of recent debates that focus upon the historical lack of a sustained, indigenous, disability-led theatre activity in Northern Ireland and the recent efforts by non-disabled professional arts practitioners to establish such activity in the region. It offers, as an exemplar to current discussion, an analysis of how the choice and agency of the young members of The Mixed Peppers were compromised by the well-meaning but potentially oppressive practices of its leadership. It questions whether the project was unduly influenced by parental desire to see their disabled children `normalized' in a high-profile theatrical production. Finally, it considers how The Mixed Peppers' institutional situation, as a project controlled and administered by a disability charity, was implicated in the premature demise of the initiative.

Video clip: Understanding ‘Wellbeing’ in the Lives of Adolescents with Disabilities

This short (2 minute) digital media clip was designed in consultation with an advisory group of young people with disabilities, as a means of providing information about a research project to potential participants. This format was used to overcome barriers whereby written information may not have been appropriate to the young person’s needs. It also allowed the researchers to introduce themselves to the young people and become familiar to them before face-to-face meeting.

Obesity in People with Learning Disabilities: the impact of nurse led health screenings and health promotion activities

Background. Obesity appears to be more common among people with intellectual disabilities, with few studies focusing on achieving weight reduction. Aim. Firstly, to follow up people identified as overweight and obese following special health screening clinics and to determine the actions taken. Secondly, to evaluate the impact of health promotion classes on participants' weight loss. Methods. A clinic led by two learning disbaility nurses was held for all people aged 10 years and over (n=464) who attended special services within the area of one Health and Social Services Trust in Northern Ireland. In a second study, the nurses organised health promotion classes for 20 people over a 6 - 8 week period. Findings. The health screen identified 64% of adults and 26% of 10 - 19 year olds as being overweight or obese. Moreover, those aged 40 - 49 years who were obese had significantly higher levels of blood pressure. However, information obtained from a follow up questionnaire sent after 3 months suggested that of the 122 people identified for wiehgt reduciton, action had been taken for only 34% of them and only three were reported to have lost weight. The health promotion classes, however, led to a significant reduction in weight and body mass index scores. Conclusion. Health screening per se has limited impact on reducing obesity levels in this client group. Rather, health personnel such as general practitioners, nurses and health promotion staff need to work in partnership with service staff, carers and people with intellectual disabiltieis to create more active lifestyles.

End-of-Life care and people with intellectual disabilities: A multi-media educational resource

Aim This study aimed to develop and evaluate a multi-media educational resource in palliative and end-of-life care for specialist palliative care and intellectual disability services which promoted collaborative working. Methods: A mixed methods design involving three phases was used. Qualitative data were obtained from semi-structured interviews with a purposive sample of professionals (n=30) and family carers (n=5) and from two focus groups with people with intellectual disabilities (n=17). Data were content analysed as outlined y Newell and Burnard (2006). This identified training needs and issues, in end-of-life care for this population which were confirmed through quantitative data from services in a regional scoping study analysed using descriptive statistics. A DVD and manual were developed and evaluated with twelve professionals. Data were collected using a solicited diary, the Readiness for Inter-professional Learning Scale, Likert Scales and an evaluation questionnaire. Thematic analysis and descriptive statistics appropriate to data were used.Results: Findings suggest that this resource demonstrates the need for and benefits of partnership working and transferability of this learning to practice could address issues at end-of-life for people with intellectual disabilities. Conclusions: Findings of this study have importance for partnership working and service provision in end-of-life care for this population.

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.

Defining consensus norms for palliative care of people with intellectual disabilities in Europe using Delphi methods: A White Paper from the European Association of Palliative care

Background: People with intellectual disabilities often present with unique challenges that make it more difficult to meet their
palliative care needs.
Aim: To define consensus norms for palliative care of people with intellectual disabilities in Europe.
Design: Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus
were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for
Palliative Care reviewed and approved the final version.
Setting and participants: Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members’ networks.
Results: A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training
and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents’ comments, several items were modified and one item was deleted.
Conclusion: This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice.

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

Providing psychological services for people with diabetes

Previous research and service development guidelines have highlighted the importance of psychological issues in diabetes care, and both people with diabetes and diabetes professionals recognise the need for specialist psychological input. This article outlines the development of a service delivery model for psychological services in diabetes care, based on a patient needs assessment and the advice of diabetes professionals. This involved an assessment of the psychological needs of people with diabetes within an urban Health Trust in Northern Ireland, and the collation of the views of local diabetes professionals. Questionnaires to assess for depression, anxiety, binge eating behaviour and diabetes-specific worries were completed by 300 people with diabetes. The participants were accessed through both primary and secondary care diabetes teams. As expected, a high level of psychological distress relative to population norms was illustrated by the patient needs assessment. Particularly high levels of binge eating behaviour were reported, and levels of distress were higher for community-managed patients than for hospital-managed patients. The diabetes professionals unanimously agreed that there is a need for specialist psychological input and contributed to the service delivery model which is outlined in this article.

Costing the hospital-based process of resettling people with learning disability in the community

Objectives: Much has been written about the costs and cost-effectiveness of community care for people with learning disabilities resettled from long stay hospital care. However, comparatively little has been published about the cost of hospital services relating to the preparatory process before eventual resettlement and the disengagement of formal, sustained input from hospital staff. This study describes and costs the input provided by a hospital based multi-disciplinary team into the resettlement of adults with learning disabilities, from long stay wards in Muckamore Abbey Hospital in Northern Ireland between 1996 and 1999 (n = 71).