Bereavement Interventions for Adults with Intellectual Disabilities: What Works?

2010 ◽  
Vol 61 (2) ◽  
pp. 163-177 ◽  
Author(s):  
Mary Ann Clute
Keyword(s):  
Intellectual Disabilities ◽  
Best Practice ◽  
Community Education ◽  
Care Providers ◽  
Daily Work ◽  
Practice Recommendations ◽  
What Works ◽  
Grief Counselors ◽  
Adults With Intellectual Disabilities ◽  
Theory Base

Examination of the theory base for bereavement and loss is currently just beginning for adults with intellectual disabilities (ID). Yet, as life spans increase for individuals with ID, these adults experience more and more loss and bereavement events. Practitioners, especially grief counselors, are finding it increasingly critical for them to understand best practice principles for working with bereaved adults with ID in their daily work. Practitioners also are asked to guide families and care providers regarding grief and death education. This article provides counselors and other professionals with a review of existing bereavement intervention research for adults with ID. Practice recommendations are made on three levels: informal support; formal intervention; and community education.

scholarly journals Screening of Cognitive Changes in Adults with Intellectual Disabilities: A Systematic Review

2020 ◽  
Author(s):  
Andreia F. Paiva ◽  
Adam Nolan ◽  
Charlotte Thumser ◽  
Flavia H. Santos
Keyword(s):  
Systematic Review ◽  
Intellectual Disabilities ◽  
Best Practice ◽  
Web Of Science ◽  
Total Sample ◽  
Cognitive Changes ◽  
Cross Sectional ◽  
Age Related ◽  
Adults With Intellectual Disabilities ◽  
Practice Methods

Abstract: Background and Aims: Screening and assessment of cognitive changes in adults with Intellectual Disabilities, mainly Down Syndrome (DS), is crucial to offer appropriate services to their needs. We present a systematic review of the existing instruments assessing dementia, aiming to support researchers and clinicians’ best practice. Methods: Searches were carried out in the databases Web of Science; PubMed; PsycINFO in March 2019 and updated in May 2020. Studies were selected and examined if they: (1) focused on assessing age-related cognitive changes in person with ID; (2) included adults and/or older adults; (3) included scales and batteries for cognitive assessment. Results: Forty-eight cross-sectional studies and twenty-six longitudinal studies were selected representing a total sample of 5,851 participants (4,089 DS and 1,801 with other ID). In those studies, we found 38 scales, questionnaires, and inventories, and 13 batteries for assessing cognitive and behavioural changes in adults with DS and other ID. Conclusion: The most used instrument completed by an informant or carer was the Dementia Questionnaire for Learning Disabilities (DLD), and its previous versions. We discuss the strengths and limitations of the instruments and outline recommendations for future use.

scholarly journals Screening of Cognitive Changes in Adults with Intellectual Disabilities: A Systematic Review

2020 ◽  
Author(s):  
Paiva A.F ◽  
Nolan A. ◽  
Thumser C. ◽  
Santos F.H.
Keyword(s):  
Systematic Review ◽  
Intellectual Disabilities ◽  
Best Practice ◽  
Web Of Science ◽  
Total Sample ◽  
Cognitive Changes ◽  
Cross Sectional ◽  
Age Related ◽  
Adults With Intellectual Disabilities ◽  
Practice Methods

Background and Aims: Screening and assessment of cognitive changes in adults with Intellectual Disabilities, mainly Down Syndrome (DS), is crucial to offer appropriate services to their needs. We present a systematic review of the existing instruments assessing dementia, aiming to support researchers and clinicians’ best practice. Methods: Searches were carried out in the databases Web of Science; PubMed; PsycINFO in March 2019 and updated in May 2020. Studies were selected and examined if they: (1) focused on assessing age-related cognitive changes in person with ID; (2) included adults and/or older adults; (3) included scales and batteries for cognitive assessment. Results: Forty-eight cross-sectional studies and twenty-six longitudinal studies were selected representing a total sample of 5,851 participants (4,089 DS and 1,801 with other ID). In those studies, we found 38 scales, questionnaires, and inventories, and 14 batteries for assessing cognitive and behavioural changes in adults with DS and other ID. Conclusion: The most used instrument completed by an informant or carer was the Dementia Questionnaire for Learning Disabilities (DLD), and its previous versions. We discuss the strengths and limitations of the instruments and outline recommendations for future use.

scholarly journals Development and validation of the Capacity to Treat Chronic Pain and Opioid Use Disorder (CAP-POD) questionnaire

2020 ◽  
Vol 1 ◽  
pp. 263348952094885
Author(s):  
Allyson L Varley ◽  
Burel R Goodin ◽  
Heith Copes ◽  
Stefan G Kertesz ◽  
Kevin Fontaine ◽  
...  
Keyword(s):  
Chronic Pain ◽  
Best Practice ◽  
Primary Care Providers ◽  
Opioid Use Disorder ◽  
Care Providers ◽  
Opioid Use ◽  
High Quality Research ◽  
Practice Recommendations ◽  
Factors Influencing ◽  
Item Questionnaire

Background: Patients with co-occurring chronic pain and opioid use disorder (OUD) have unique needs that may present challenges for clinicians and health care systems. Primary care providers’ (PCPs) capacity to deliver high quality, research-informed care for this population is unknown. The objective of this study was to develop and test a questionnaire of factors influencing PCP capacity to treat co-occurring chronic pain and OUD. Methods: Capacity to Treat Co-Occurring Chronic Pain and Opioid Use Disorder (CAP-POD) questionnaire items were developed over a 2-year process including literature review, semi-structured interviews, and expert panel review. In 2018, a national sample of 509 PCPs was recruited through email to complete a questionnaire including the initial 44-item draft CAP-POD questionnaire. CAP-POD items were analyzed for dimensionality, inter-item reliability, and construct validity. Results: Principal component analysis resulted in a 22-item questionnaire. Twelve more items were removed for parsimony, resulting in a final 10-item questionnaire with the following 4 scales: (1) Motivation to Treat patients with chronic pain and OUD (α = .87), (2) Trust in Evidence (α = .87), (3) Assessing Risk (α = .82), and (4) Patient Access to therapies (α = .79). These scales were associated with evidence-based practice attitudes, knowledge of pain management, and self-reported behavioral adherence to best practice recommendations. Conclusion: We developed a brief, 10-item questionnaire that assesses factors influencing the capacity of PCPs to implement best practice recommendations for the treatment of co-occurring chronic pain and OUD. The questionnaire demonstrated good reliability and initial evidence of validity, and may prove useful in future research as well as clinical settings. Plain language abstract Patients with co-occurring chronic pain and opioid use disorder (OUD) have unique needs that may present challenges for clinicians and health care systems. Primary care providers’ (PCPs) ability to deliver high quality, research-informed care for this population is unknown. There are no validated instruments to assess factors influencing PCP capacity to implement best practices for treating these patients. The objective of this study was to develop and test a questionnaire of factors influencing PCP capacity to treat co-occurring chronic pain and OUD. We recruited 509 PCPs to participate in an online questionnaire that included 44 potential items that assess PCP capacity. Analyses resulted in a 10-item questionnaire that assesses factors influencing capacity to implement best practice recommendations for the treatment of co-occurring chronic pain and OUD. PCPs reported moderately high confidence in the strength and quality of evidence for best practices, and in their ability to identify patients at risk. However, PCPs reported low motivation to treat co-occurring chronic pain and OUD, and perceived patients’ access to relevant services as suboptimal, highlighting two areas that should be targeted with tailored implementation strategies. The 10-item Capacity to Treat Chronic Pain and Opioid Use Disorder (CAP-POD) questionnaire can be used for two purposes: (1) to assess factors influencing PCP capacity before implementation and identify areas that may require improvement for implementation and (2) to evaluate implementation interventions aimed at increasing PCP capacity to treat this population.

scholarly journals Screening of Cognitive Changes in Adults with Intellectual Disabilities: A Systematic Review

2020 ◽  
Vol 10 (11) ◽  
pp. 848
Author(s):  
Andreia F. Paiva ◽  
Adam Nolan ◽  
Charlotte Thumser ◽  
Flávia H. Santos
Keyword(s):  
Systematic Review ◽  
Intellectual Disabilities ◽  
Best Practice ◽  
Web Of Science ◽  
Total Sample ◽  
Cognitive Changes ◽  
Cross Sectional ◽  
Age Related ◽  
Adults With Intellectual Disabilities ◽  
Practice Methods

Background and Aims: Screening and assessment of cognitive changes in adults with Intellectual Disabilities (ID), mainly Down Syndrome (DS), is crucial to offer appropriate services to their needs. We present a systematic review of the existing instruments assessing dementia, aiming to support researchers and clinicians’ best practice. Methods: Searches were carried out in the databases Web of Science; PubMed; PsycINFO in March 2019 and updated in October 2020. Studies were selected and examined if they: (1) focused on assessing age-related cognitive changes in persons with ID; (2) included adults and/or older adults; (3) included scales and batteries for cognitive assessment. Results: Forty-eight cross-sectional studies and twenty-seven longitudinal studies were selected representing a total sample of 6451 participants (4650 DS and 1801 with other ID). In those studies, we found 39 scales, questionnaires, and inventories, and 13 batteries for assessing cognitive and behavioural changes in adults with DS and other ID. Conclusion: The most used instrument completed by an informant or carer was the Dementia Questionnaire for Learning Disabilities (DLD), and its previous versions. We discuss the strengths and limitations of the instruments and outline recommendations for future use.

scholarly journals ‘Cautiously optimistic’: Older parent-carers of adults with intellectual disabilities – Responses to the Care Act 2014

2019 ◽  
Vol 23 (3) ◽  
pp. 432-445
Author(s):  
Valerie Gant ◽  
Claire Bates
Keyword(s):  
United Kingdom ◽  
Intellectual Disabilities ◽  
Best Practice ◽  
Well Being ◽  
The Body ◽  
Structured Interviews ◽  
North West ◽  
The United Kingdom ◽  
Adults With Intellectual Disabilities ◽  
The Impact

This article discusses potential opportunities for best practice in the United Kingdom that may be brought about by the Care Act (2014). Carers in the United Kingdom were given new rights within this legislation with a focus on needs led assessment. The underpinning philosophy of the Care Act is to streamline the previous legislation and offers a framework for carers and people in receipt of care, to enable a more personalized approach to care and support. Offering a discussion of likely opportunities brought about by provisions of the Care Act, this article draws on a small study involving older parent/carers of sons or daughters with intellectual disabilities. Exploring the extent to which such parents of adults with intellectual disabilities were aware of the details of this legislation and the potential impact it may have on their lives highlighted other significant areas, some of which are discussed below. Semi-structured interviews were conducted with five parents over the age of 60 of sons or daughters with intellectual disabilities in North West England. The study adds to the body of knowledge and understanding about parents of adults with intellectual disabilities and explores and provides a deeper understanding of parents’ experiences of the implementation of this specific piece of legislation and their perception of the relevance of it to themselves. Findings include some awareness of the legislation and some feelings of optimism about its likely implications, although participants appeared less clear about the specificities and the impact of these upon them and/or their sons or daughters. Findings from the semi-structured interviews also showed parent’s articulation of the extent of reciprocal care manifest between them and their son or daughter with an intellectual disability, as well as an awareness of the fragility of their own emotional well-being.

Living Disconnected: Building a Grounded Theory View of Bereavement for Adults with Intellectual Disabilities

2015 ◽  
Vol 76 (1) ◽  
pp. 15-34 ◽  
Author(s):  
Mary Ann Clute
Keyword(s):  
Grounded Theory ◽  
Intellectual Disabilities ◽  
Theoretical Explanation ◽  
Small Sample ◽  
Disenfranchised Grief ◽  
Loss And Grief ◽  
Increased Risk ◽  
Grief Counselors ◽  
Adults With Intellectual Disabilities ◽  
Theory View

This grounded theory study gathered descriptions the bereavement experience for adults with intellectual disabilities (IDD) through the eyes and voices of a small sample of grief counselors. The counselors described bereaved adults with IDD as individuals who faced potentially heightened effects of the broken attachment bonds, increased risk of coping obstacles, long histories of unrecognized losses, and disenfranchised grief. The participants described bereaved adults with IDD (who sought treatment) as getting pushed to the sidelines to deal with their losses in isolation and confusion. It became evident that though there are many similarities between how all people cope with loss and how people with IDD cope with loss, differences exist. Subtle variations in the experience of loss and grief appear to be driven by culture and beliefs about disability and protection for those with IDD. The participants in this dissertation study contributed foundation data for a theoretical explanation of grief for adults with IDD grounded in data from bereavement counselors.

Aging in Adults With Intellectual Disabilities

2014 ◽  
Vol 19 (1) ◽  
pp. 36-43
Author(s):  
Tracy Lazenby-Paterson ◽  
Hannah Crawford
Keyword(s):  
Intellectual Disabilities ◽  
Swallowing Disorders ◽  
Speech And Language ◽  
Adults With Intellectual Disabilities

The literature recognizes the important role of the Speech and Language Pathologist (SLP) in the treatment of communication and swallowing disorders in children with Intellectual Disabilities (ID). However there is also a need to emphasize the importance of specialist SLP input across the lifespan of people with ID, and to recognize the specific, ongoing and changing communication and swallowing needs of adults with ID as they get older.

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