Journal of applied research in intellectual disabilities : JARID最新文献

Background: Extended brief interventions for alcohol misuse are effective in the general population. The process of manualising the first ever such intervention for people with mild to moderate intellectual disabilities in the UK is the focus of this study.

Methods: The manual was an adaptation of existing manuals based on Motivational Enhancement and Cognitive Behaviour Therapy and was used in a feasibility randomized controlled trial, the EBI-LD study. The sessions were recorded and scored using an adapted version of the Yale Adherence and Competence Scale (YACS II). Feedback was provided by therapists. The trial is closed. Registered: isrctn.com; ISRCTN58783633.

Results: The quality of the sessions provided was rated as good. Therapists were able to cover all topics within each session. Main challenges included session duration and homework task completion.

Conclusions: We recommend the duration of the sessions to be extended to 40 min to accommodate carers in the session and to enhance their support in homework task completion.

Background/introduction: In this study, we investigated intellectual disability support professionals' knowledge and expectations towards effects of psychotropic drug use on behaviour and drug use in their clients, because shortcomings may lead to misinterpretations of behavioural symptoms and inappropriate drug use.

Methods: Two self-designed questionnaires were used to measure the knowledge and expectations of 194 support professionals in 14 residential facilities regarding psychotropic drug use and effects of antipsychotics on behavioural, cognitive and mental functioning of people with intellectual disability. The psychometric properties of both questionnaires were adequate.

Results: A majority of the professionals had unrealistic expectations regarding the positive effects of antipsychotics on cognitive and behavioural functioning, and 94% scored below the cut-off scores regarding knowledge; 60% indicated they needed education and training.

Conclusions: To achieve sufficient collaboration of intellectual disability support professionals in reducing inappropriate psychotropic drug use of clients, vocational educational training is needed.

Background: Individuals with an intellectual disability are vulnerable to having end-of-life decisions made for them merely due to the presence of a disability. As a result, decisions made by others may not reflect the exact wishes of the individual.

Methods: This review examines literature on individuals with an intellectual disability in making end-of-life decisions from the years 2000 to 2014. A total of 38 articles were found with 12 articles having a direct focus on end-of-life decision making.

Results: The emerging themes include the following: (i) assumption of lack of capacity, (ii) inconsistency in evaluating capacity and communication challenges and (iii) third party decisions.

Conclusions: Earlier discussions about end-of-life planning before the diagnosis of a life-limiting illness would be beneficial. Lacking is a consistent approach to determining capacity for individuals with an intellectual disability. The findings from this review provide a foundation for a decision tree in end-of-life decision making for individuals with an intellectual disability.

Background: Historically, people with intellectual disabilities have tended to be excluded from knowing about death, dying and bereavement. Staff in intellectual disability services can play a valuable role in improving understanding of these issues in those they support. This qualitative metasynthesis aimed to understand the experiences of staff supporting adults with intellectual disabilities with issues of death, dying and bereavement.

Method: Thirteen papers were identified following a systematic review of six databases.

Results: Three themes were developed following a lines-of-argument synthesis: (i) talking about death is hard: negotiating the uncertainty in death, dying and bereavement; (ii) the commitment to promoting a "good death"; and (iii) the grief behind the professional mask. "A cautious silence: The taboo of death" was an overarching theme.

Conclusions: A more open culture around issues of death, dying and bereavement in intellectual disability settings is essential and could be promoted through staff training and support.

Background: The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) promotes the use of supported decision making in lieu of substitute decision making. To date, there has been a lack of focus on supported decision making for people with severe or profound intellectual disability, including for end of life decisions.

Methods: Five people with severe or profound intellectual disability's experiences of supported decision making were examined. This article is particularly focused on one participant's experiences at the end of his life.

Results: All five case studies identified that supporters were most effective in providing decision-making support for participants when they were relationally close to the person and had knowledge of the person's life story, particularly in relation to events that demonstrated preference.

Conclusions: Findings from this study provide new understandings of supported decision making for people with severe or profound intellectual disability and have particular relevance for supporting decision making at the end of life.

Background: People with intellectual disabilities are thought to have a reduced capacity for understanding death. Drawing on cognitive theory, researchers have suggested that those with profound intellectual and multiple disabilities mainly perceive loss as a mismatch between past and present experiences. However, very little research has considered how carers conceptualize bereavement in relation to this group.

Method: Semi-structured interviews obtained responses from seven carers. Transcripts were examined using interpretative phenomenological analysis.

Results: Two superordinate themes emerged: 'difficulty articulating the experience of loss' and 'making sense of bereavement through familiar patterns'.

Conclusions: Carers conceptualize bereavement primarily in cognitive terms, but also take account of relational factors mediating loss. Implications for training and further research are outlined.

Background: Emergency medical services (EMS) providers are often called to rapidly determine and act upon patients' wishes for end-of-life care. People with intellectual disabilities are living increasingly longer with complex conditions leading to international calls for person-centred advance care planning. Yet, best estimates suggest that very few people with intellectual disabilities document their wishes.

Methods: This exploratory-descriptive study incorporated mixed methods to analyse data collected consecutively (surveys, n = 239; interviews, n = 48) with EMS providers from five agencies. Data were subjected to a sequential quantitative-qualitative analysis applying a critical discourse analysis framework.

Results: Findings indicate that 62.7% had treated a person with intellectual disability who had medical orders directing end-of-life care. Three themes (provider familiarity, organizational processes, sociocultural context) offer insights about how medical orders inform EMS providers during calls involving people with intellectual disabilities.

Conclusion: Multiple contexts influence how wishes are documented and care provided to people with intellectual disabilities near life's end.

Background: The dearth of literature regarding how or when to intervene when an adult with intellectual disability is bereaved may impede clinical practice; this study therefore aimed to explore the current clinical psychology response, so as to enhance understanding of the role of the profession in supporting grief within this population.

Method: A collective case study design was used. Data for six persons with intellectual disability, including interviews with parentally bereaved persons and involved staff members, were integrated into individual case stories for cross-case synthesis.

Results: Data were analysed using thematic analysis. Five overarching themes illustrated that the clinical psychology role is broadly distributed and identified potentially complicating factors such as "gatekeeping" and "staff uncertainty."

Conclusions: A model of bereavement supports reflecting that by Read (Learning Disability Practice, 8, 2005, 31) is being approximated in clinical practice; further research is required to determine how best to implement this, and whether this meets the true needs of the population.

Background: A paucity of information is available on direct care workers' (DCWs') experiences with loss when their clients (people with intellectual and developmental disabilities [I/DD]) die. This study explored DCWs' grief experiences, their coping methods and their needs for support.

Methods: A thematic analysis approach was used to examine data from nine focus groups with 60 DCWs from five community-based organizations that provide services to people with I/DD.

Results: Three themes (factors affecting DCW loss, ways that DCWs cope with loss and organizational issues affecting the bereavement experience) and associated subthemes emerged from the data. This highlighted not only DCW professional grief experiences but how organizational communication and policy affected their grief experience.

Conclusions: DCWs experience grief in the workplace but may receive insufficient organizational bereavement supports. Recommendations are made for organizational policies and resources to improve organizational communication and assist DCWs in coping with their grief.