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From premise to practice: applicability of a consensus statement for supporting adults with IDD who are frail
- Authors:
- BARABASH Tori, OUELLETTE‐KUNTZ Helene, MARTIN Lynn
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 34(2), 2021, pp.670-674.
- Publisher:
- Wiley
Background: Study of frailty in adults with intellectual and developmental disabilities (IDD) is relatively new. To build the body of literature, an international consensus statement on how to support adults with IDD as they become frail was developed based on fictional cases. This study examined the face validity and applicability of the consensus statement to real‐world care planning. Method: Twenty‐three care plans for adults with IDD who were classified along the frailty continuum were reviewed. Documented goals, actions and outcomes were coded according to the consensus statement's principles and recommendations. Results: The recommendations ‘Improvement and maintenance are viable goals’ and ‘Intersectoral collaboration is needed’ were documented the most often. Attention to the needs of formal and informal caregivers was mentioned the least often in care plans. Conclusions: This study provides some support for the face validity of the consensus statement and its applicability to supporting adults with IDD who are frail. (Edited publisher abstract)
Relationship between self-report and proxy ratings on assessed personal quality of life-related outcomes
- Authors:
- CLAES Claudia, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 9(3), September 2012, pp.159-165.
- Publisher:
- Wiley
Assessing the quality of life (QoL) of a person with intellectual disabilities is often complicated by their limited verbal abilities. Assessment processes often have to rely on informants such as a family member or support worker. This article reports on 2 studies which aimed to evaluate the impact of self-report vs. proxy ratings in the assessment of QoL scores. Study 1 aimed to evaluate the consistency between self-report and direct observation data by support staff. The participants were 161 individuals with mild or moderate levels of intellectual functioning. Study 2 aimed to evaluate the difference between self-report and proxy ratings using direct observation interviews with family and support staff. The participants were 42 individuals with a mild level of intellectual disability. Both studies involved the use of the self-report and the direct observation forms of the Personal Outcomes Scale. Study 1 found significant differences between the 2 respondent groups in 3 QoL domains and an acceptable level of internal consistency for both self-report and direct observation strategies. Study 2 found some differences between client and staff ratings but no significant differences between client and family ratings. The article concludes with noting the need for methodological pluralism in QoL assessment, the importance of self-report by persons with intellectual disability, and the need to develop better strategies to evaluate QoL outcomes for those individuals who cannot respond for themselves.
Support characteristics associated with the quality of life of people with profound intellectual and multiple disabilities; the perspective of parents and direct support staff
- Authors:
- PETRY Katja, MAES Bea, VLASKAMP Carla
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 4(2), June 2007, pp.104-110.
- Publisher:
- Wiley
The authors examined which support characteristics are associated with the quality of life (QOL) of people with profound intellectual and multiple disabilities (PIMD). The authors invited parents and direct support staff of people with PIMD to adopt the perspective of their child or the person with PIMD for whom they care. Some 76 parents and direct support staff of people with PIMD were interviewed, and to obtain data, transcripts were analyzed in-depth. The respondents mentioned: (1) characteristics with regard to the structure of the setting (physical environment, staff ratio, staff turnover, group size, and group composition); (2) characteristics with regard to the internal organization of the support (partnership, teamwork, interdisciplinary, and support planning); and (3) characteristics with regard to the support staff (experience, sensitive responsiveness, commitment and motivation, physical strength, knowledge and skills, and self-reflection). The respondents considered structural as well as operating features of the support setting to be important for the QOL of people with PIMD. The authors conclude that their main emphasis, however, was on the central role of direct support staff in supporting people with PIMD.
Barriers to caregiver compliance with eating and drinking recommendations for adults with intellectual disabilities and dysphagia
- Authors:
- CHADWICK Darren D., et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 19(2), June 2006, pp.153-162.
- Publisher:
- Wiley
This study explores the barriers which caregivers believe make following Speech and Language Therapists' (SLTs) dysphagia management strategies more difficult. Semi-structured open-ended interviews were conducted with 46 caregivers who supported 40 intellectually disabled adults with dysphagia. Caregivers perceived particular difficulties in modifying food and drinks to safe consistencies, achieving the agreed positioning during mealtimes, and in using support and prompting strategies. Problematic support and prompting strategies included difficulties with pacing correctly; facilitating people to adequately relax and concentrate; observing and prompting people to pace suitably and take safe amounts of food and drink in each mouthful. Additional barriers identified included time pressures, staff turnover and insufficient reviewing of SLT management strategies by caregivers. Findings suggest that additional training and monitoring is required to ensure caregivers are aware of their role and responsibility in promoting safe oral intake for adults with dysphagia and intellectual disabilities. Ongoing support is suggested for people with intellectual disabilities and dysphagia to help them understand the reasoning behind management strategies.
Inconsistencies in the roles of family- and paid- carers in monitoring health issues in people with learning disabilities: some implications for the integration of health and social care
- Author:
- WILLIS Diane S.
- Journal article citation:
- British Journal of Learning Disabilities, 43(1), 2015, pp.24-31.
- Publisher:
- Wiley
Changes in the living circumstances of people with learning disabilities have seen responsibility for their health become the provenance of paid-and family-carers. As part of a larger study exploring breast cancer screening in women with learning disabilities, thirteen semi-structured interviews were conducted with three family-carers and ten paid-carers. Interview topics covered demographics, keeping healthy, the experience of breast screening and decision-making. Findings revealed that the role of these carers was undefined, leading to difficulty in deciphering who was responsible for the health care of the people they supported, with some paid-carers claiming that health was out of their remit. The difficulty of monitoring health problems of people with learning disabilities was noted, and carers disclosed skills and techniques that they used to explain health messages to individuals. If the health needs of people with learning disabilities are to be met, then a more consistent approach to health care within the community setting is needed, especially in terms of the remit of paid-and family-carers and with the integration of health and social services. (Publisher abstract)
Exploring coping strategies of carers looking after people with intellectual disabilities and dementia
- Authors:
- PERERA Bhathika D., STANDEN Penny J.
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 8(5), 2014, pp.292-301.
- Publisher:
- Emerald
Purpose: Carers play a vital role in looking after people with intellectual disabilities (ID). Caring role can be stressful and challenging in nature. Carers use various coping strategies to deal with stressors. The purpose of this paper is to explore coping strategies of carers looking after people with ID and dementia. Design/methodology/approach: Qualitative methodology was used to explore coping strategies. Focus groups and face-to-face interviews were carried out. These interviews were transcribed and analysed using thematic analysis. Findings: Nine interviews with carers (six paid carers and three family carers) and two focus groups with nursing staff looking after people with ID were carried out. Three key themes of “Narrative”, “Strategy toolbox” and “Compartmentalisation” emerged from analysis. Narrative and strategy took box were further subthemed. Carers had narratives about them and the person they look after. These “narratives” helped them to deal with day to day stressors. They also carried a “strategy toolbox”, which they used when they were in stressful situations. Compartmentalisation helped them to separate their personal life from work life as a carer. Originality/value: Understanding carers’ coping strategies is important when planning services to help carers who play an important role in our society. Professionals can support carers to understand and improve their existing coping skills and help them to thrive in their role as carers. (Publisher abstract)
The experience of carers in supporting people with intellectual disabilities through the process of bereavement: an interpretative phenomenological analysis
- Authors:
- HANDLEY Emily, HUTCHINSON Nick
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 26(3), 2013, pp.186-194.
- Publisher:
- Wiley
A semi-structured interview was used to interview 11 carers on their experience of supporting adults with intellectual disabilities through the process of bereavement. The transcripts were analysed using interpretative phenomenological analysis (IPA). A total of five superordinate themes were identified: (i) Factors making the experience difficult for carers, (ii) Factors that helped carers, (iii) Carers' perspectives on the responses of people with intellectual disabilities, (iv) Approaches to supporting people with intellectual disabilities and (v) Carers' perspectives on support. Supporting people with intellectual disabilities through bereavement is an emotionally demanding task for carers. The support needs of carers need to be acknowledged and addressed in order to ensure that adequate support is available to people with intellectual disabilities following bereavement. (Edited publisher abstract)
Self-efficacy and stress of staff managing challenging behaviours of people with learning disabilities
- Author:
- CUDRÉ-MAUROUX Annick
- Journal article citation:
- British Journal of Learning Disabilities, 39(3), September 2011, pp.181-189.
- Publisher:
- Wiley
Professional caregivers have been shown to experience high levels of stress when they have to face challenging behaviours in children with learning disabilities. The role of self-efficacy has been found to affect the stress levels of professional caregivers in such situations. This short study explored the relationship between self-efficacy and stressful situations through a qualitative research design. Semi-structured interviews were help with a small number of professional caregivers. Theoretical indicators of self-efficacy regarding particular stress stages were identified in a categorical analysis. A case study method was used to promote ecological data and enhance understanding of various influencing factors. Findings suggest the importance of adequate measures of self-efficacy regarding its usage in varying contexts. Different forms of self-efficacy related to the coping process for professional caregivers are suggested. Implications for practice are discussed.
In the driving seat: a workbook to help me plan my support
- Authors:
- SANDERSON Helen, MCSTRAVICK Suzanne
- Publisher:
- In Control
- Publication year:
- 2007
- Pagination:
- 24p.
- Place of publication:
- London
This guide is aimed at individuals who need support to help them make their own plan which enables them to live the life they want. It has 2 parts. Part 1, ‘Deciding Where To Go’, discusses information that needs to be considered before designing the plan, such as: what money is available; who can help make important decisions and put the plan together; what the person wants their life to be like and what they enjoy doing; and keeping fit and healthy. Part 2, ‘Getting There’, considers the support that is needed to enact the plan. It includes considering where the person want to live and spend time. It also includes consideration of who will provide support, what they should be like, what they should do, how they should be managed, and how much the support will cost.
Top tips: how you can support people to plan
- Authors:
- SANDERSON Helen, MCSTRAVICK Suzanne
- Publisher:
- In Control
- Publication year:
- 2007
- Pagination:
- 35p.
- Place of publication:
- London
Some people need support to decide their route through life. This booklet is aimed at family members, friends, advocates and paid workers of people who require support. It provides them with ideas to help them support the person to make a plan which enables them to live the life they want. The guide has 2 parts. Part 1, ‘Deciding Where To Go’ , discusses information that need to be considered before designing the plan, such as: what money is available for support; who can help make important decisions and put the plan together; understanding the person and what they enjoy doing; and keeping fit and healthy. Part 2, ‘Deciding How To Get There’, considers the support that is needed to enact the plan. It includes considering where the person wants to live and what housing choices are possible. It also advises writing out a timetable which sets out how the person will spend their time and filling in the times of paid and unpaid support. Four different types of support that can be used are considered: specialist support providers; individual support providers; family and friends; and support that occurs naturally in the community. Employment of supporters, such as designing the person specification, job description and recruitment, are also considered.