Perspectives of people with mild intellectual disabilities on care relationships at the end of life: A group interview study

Bekkema, Nienke; Veer, Anke Je de; Hertogh, Cees M.P.M.; Francké, Anneke L.

doi:10.1177/0269216316640421

Cited by 28 publications

(44 citation statements)

References 31 publications

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“…Relatives and professionals explained that they looked carefully at the person in question and from their perspective, thereby acting on behalf of the persons' interests. However, it is known from previous research that people with mild ID want to be informed about their health status, to be asked more about their care wishes and to be listened to (Tuffrey-Wijne et al 2006;Bekkema et al 2016;McKenzie et al 2017). In line with previous research, we also recommend that relatives and professionals consider ways of involving people with ID in ACP rather than assuming, possibly incorrectly, that it would be too burdensome for them to become involved (van Thiel et al 1997;Tuffrey-Wijne & Mcenhill 2008;Tuffrey-Wijne et al 2010b;Wagemans et al 2010;Bekkema et al 2014b;McKenzie et al 2017).…”

Section: Discussionsupporting

confidence: 55%

Advance care planning in the palliative phase of people with intellectual disabilities: analysis of medical files and interviews

Voss

Vogel²,

Wagemans

et al. 2019

J intellect Disabil Res

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Background Advance care planning (ACP) is a process in which professionals, patients and their relatives discuss wishes and options for future care. ACP in the palliative phase reduces the chance that decisions have to be taken suddenly and can therefore improve the quality of life and death. The primary aim of this study is to explore how ACP takes place in cases of people with intellectual disabilities (ID). Method Medical files were analysed, and interviews were held in six care organisations for people with mild to severe ID. The data concerned people with ID (n = 30), 15 in the palliative phase, identified using the ‘surprise question’, and 15 who had died after an identifiable period of illness. Additional pre‐structured telephone interviews were conducted with their relatives (n = 30) and professionals (n = 33). Results For half of the people with ID who had died, the first report in their file about palliative care (needs) was less than 1 month before their death. Professionals stated that ACP was started in response to the person's deteriorating health situation. A do‐not‐attempt‐resuscitation order was recorded for nearly all people with ID (93%). A smaller group also had other agreements between professionals and relatives documented in their files, mainly about potentially life‐sustaining treatments (43%) and/or hospitalisation admissions (47%). Relatives and professionals are satisfied with the mutual cooperation in ACP in the palliative phase. Cognitive and communication disabilities were most frequently mentioned by relatives and professionals as reasons for not involving people with ID in ACP. Conclusions Advance care planning in the palliative phase of people with ID focuses mainly on medical issues at the end of life. Specific challenges concern a proactive identification of changing needs, fear to initiate ACP discussions, documentation of ACP in medical files and the involvement of people with ID in ACP. It is recommended that relatives and professionals should be informed about the content of ACP and professionals should be trained in communicating in advance about wishes for future care.

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Section: Discussionsupporting

confidence: 55%

Advance care planning in the palliative phase of people with intellectual disabilities: analysis of medical files and interviews

Voss

Vogel²,

Wagemans

et al. 2019

J intellect Disabil Res

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“…Fifty-three articles were included [33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,54,55,56,57,58,59,60,61,62,63,64,65,66,67,68,69,70,71,72,73,74,75,76,77,78,79,80,81,82,83,84,85]. Seventeen were quantitative studies [33,34,36,37,40,43,50,51,54,61,66,67,69,71,74,81,82], of which the majority ( n = 11) were survey studies, 27 qualitative studies […”

Section: Resultsmentioning

confidence: 99%

“…Seventeen were quantitative studies [33,34,36,37,40,43,50,51,54,61,66,67,69,71,74,81,82], of which the majority ( n = 11) were survey studies, 27 qualitative studies [38,39,41,42,44,45,46,48,49,53,55,56,57,58,59,60,63,64,68,73,76,78,79,80,83,84,85], most of which were interview studies ( n = 13), and nine mixed-methods studies [35,47,52,62,65,70,72,75,77]. Most studies were conducted in Western Europe ( n = 37), especially in the UK ( n = 10), Germany ( n = 8), and the Netherlands ( n = 13).…”

Section: Resultsmentioning

confidence: 99%

“…For example, people with mild intellectual disabilities in a qualitative study expressed the value of ‘being there’ in a spiritual sense [49], and nurses, psychologists, and spiritual caregivers in a qualitative study in the UK exemplified this as follows: They listened and bore witness to patients’ suffering [38]. ‘Being there’ implied that the spiritual caregiver recognized the shared humanity of each person [41].…”

Section: Resultsmentioning

confidence: 99%

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Spiritual Care in Palliative Care: A Systematic Review of the Recent European Literature

et al. 2019

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Many studies on spiritual care in palliative care are performed in the US, leaving other continents unexplored. The objective of this systematic review is to map the recent studies on spiritual care in palliative care in Europe. PubMed, CINAHL, ATLA, PsycINFO, ERIC, IBSS, Web of Science, EMBASE, and other databases were searched. Included were European studies published in a peer-reviewed journal in 2015, 2016, or 2017. The characteristics of the included studies were analyzed and a narrative synthesis of the extracted data was performed. 53 articles were included. Spiritual care was seen as attention for spirituality, presence, empowerment, and bringing peace. It implied creative, narrative, and ritual work. Though several studies reported positive effects of spiritual care, like the easing of discomfort, the evidence for spiritual care is low. Requirements for implementation of spiritual care in (palliative) care were: Developing spiritual competency, including self-reflection, and visibility of spirituality and spiritual care, which are required from spiritual counselors that they participated in existing organizational structures. This study has provided insight into spiritual care in palliative care in Europe. Future studies are necessary to develop appropriate patient outcomes and to investigate the effects of spiritual care more fully.

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“…PWLD have been recruited as participants to explore the concept of death (McEvoy, Reid, & Guerin, 2002), future planning (Bowey & McLaughlin, 2005), end of life care (Bekkema, de Veer, Hertogh, & Francke, 2016) and bereavement intervention (Gilrane-McGarry & Taggart, 2007), but little research has explored the lived experience of bereavement. The one exception is McRitchie et al (2014).…”

Section: The Absence Of Pwld's Voices In Bereavement Researchmentioning

confidence: 99%

“I carry her in my heart”: An exploration of the experience of bereavement for people with learning disability

Thorp

Stedmon

Lloyd

2018

Brit J Learn Disabil

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Accessible summary Four people with learning disability talked about what it was like when someone they cared about had died. They said that it was important they were included, but that it was hard. They said they carried on loving the person after they died and that they missed them. Abstract BackgroundBereavement is a universal experience, yet little research has explored the lived experience of bereavement for people with learning disability (PWLD). Materials and methodsFour PWLD were interviewed about their experience of bereavement. Data were analysed using interpretative phenomenological analysis. ResultsFour themes were identified: “Needing to know: Being included,” “Struggling to say: The emotional experience,” “Love after death: A continuing relationship” and “Missing their presence: The wider impact of death.” ConclusionsPWLD should have the opportunity to make informed choices about their level of involvement and to develop their emotional experience. PWLD should be supported to develop a continued bond with the deceased and the wider impact of their loss recognised.

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Perspectives of people with mild intellectual disabilities on care relationships at the end of life: A group interview study

Abstract: The views of people with mild ID highlight the high demands which end-of-life care imposes on relational qualities of caregivers. This study shows the added value and potential of involving people with ID in studies on end-of-life care.

Cited by 28 publications

References 31 publications

Advance care planning in the palliative phase of people with intellectual disabilities: analysis of medical files and interviews

Advance care planning in the palliative phase of people with intellectual disabilities: analysis of medical files and interviews

Spiritual Care in Palliative Care: A Systematic Review of the Recent European Literature

“I carry her in my heart”: An exploration of the experience of bereavement for people with learning disability

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