Literature review of best health and social care practices for individuals with intellectual disabilities encountering the end of life (original) (raw)
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Research Square (Research Square), 2021
Background: Although people with intellectual disability are increasingly living longer and experiencing high levels of multiple co-morbidity, palliative care has received limited attention among this population. There is some evidence that their needs are unattended and that more could be done to improve care services. Methods: 28 carers who cared for older people with intellectual disability at end of life were interviewed. Data were analysed using thematic analysis. Results: One major theme emerged relating to the practical management s of end of life care in formal institutionalised settings. Seven subthemes also emerged: pain, learned acceptance, transitions, decisions, conversations about dying, GP care, rapid decline and challenges with interventions. Conclusion: Gaps emerged in the care of the person with intellectual disability. Pain assessment and pain management are particular challenges. End of life care was not always effectively planned, and earlier intervention, including end of life conversations are needed. More needs to be done in terms of education for carers, health care workers, and especially those in the acute care setting and palliative care services who may be unfamiliar with the needs of this cohort.
End-of-life care in intellectual disability: a retrospective cross-sectional study
BMJ Supportive & Palliative Care, 2019
BackgroundAdults with intellectual disability (ID) experience inequality in access to healthcare that is considered to extend to end-of-life care. Their experiences of healthcare at the end of life and how these compare with the general population are unknown.AimTo describe the end-of-life care outcomes for adults with ID living in residential care in the UK using the VOICES-SF questionnaire and compare these with the general population.DesignNationwide population-based postbereavement survey.Participants38 ID care providers took part in the study. The supported over 13 000 people with ID. Over the 18-month period of data collection, 222 deaths were reported. The survey was completed, by care staff, for 157 (70.7%) of those deaths.ResultsDecedents had complex health, functional and behavioural needs. Death was unanticipated in a high proportion of cases. Quality of care provided across care settings was generally well rated. However, hospital care and care provided at the time of wa...
Journal of Research in Nursing, 2018
Background People with intellectual disability are believed to be at risk of receiving poor end-of-life care. Nurses, given their advocacy role and duty to provide compassionate end-of-life care, have the potential to change this situation but research regarding this aspect of their role is limited. Aims This paper thus seeks to answer the question ‘How and when are nurses involved in providing care at end of life for people with intellectual disability?’ Methods A total of 38 intellectual disability care providers in the UK providing support to 13,568 people with intellectual disability were surveyed. Data regarding 247 deaths within this population were gathered in two stages and subsequently entered into SPSSX for analysis. Results Findings revealed that the majority of deaths occurred between the ages of 50 and 69 years, the most commonly reported cause of death being respiratory problems. Both community and hospital-based nurses were involved in supporting individuals during th...
Journal of Applied Research in Intellectual Disabilities, 2024
Background: People with intellectual disabilities are often left out of research on important topics. This exploratory study investigated their views on barriers and facilitators to accessing care at end of life, both at home and in a hospice setting. Method: This qualitative study used reflexive thematic analysis. Two focus groups were held via Zoom with a total of four participants. Results: Three themes were produced: Unsettling Transitions, Maintaining Familiarity, and Respecting People's Wishes. Keeping things as unchanged as possible at end of life was highlighted as an ideal. Respecting people's wishes and education were highlighted as facilitators to good end of life care. Conclusions: The themes identified in this study highlight the fears and wishes of this population with regards to receiving quality end of life care. Training for staff and families, as well as advanced care planning, could focus on enhancing facilitators and decreasing barriers for this population.
BMC Palliative Care
Background Providing care for ageing and vulnerable people with intellectual disability (ID) is challenging, and professionals working in ID care often have limited experience in palliative care. The current study provides insight into palliative care practices in ID care services and competencies of professionals and identifies ways to improve palliative care for people with ID. Methods For this study ten services in the Netherlands were recruited that provide care for people with mild to profound ID. Professionals in each of these services conducted a self-assessment of their palliative care policies and practices based on nine core element of palliative care described in the Dutch Quality Framework for Palliative Care. The self-assessment included a medical file review of a total of 100 people with ID who died non-suddenly. In addition, 424 professionals from the services returned a digital questionnaire on palliative care competencies and training needs. Results The self-assessm...
End-of-life decisions: an important theme in the care for people with intellectual disabilities
Journal of Intellectual Disability Research, 2010
Background While end-of-life decisions in the general population have received attention in several countries, not much is known about this in people with intellectual disabilities (IDs). Therefore, the prevalence and nature of end-of-life decisions were investigated in a Dutch centre providing residential care for 335 people with IDs. Method A retrospective study of medical files of people who died between January 2002 and July 2007. Results One or more end-of-life decisions were taken in 27 out of 47 cases. A non-treatment decision was taken for seven residents, possibly shortening life expectancy in some cases. The family was involved in decision making in half of the 27 cases.
Journal of Policy and Practice in Intellectual Disabilities, 2023
This brief report proposes strategies to support qualitative research with people with intellectual disabilities on topics related to death and dying. We prepared a scoping review on methodological approaches used for qualitative research on death and dying involving participants with intellectual disabilities and a study on perceived barriers and facilitators to accessing end of life settings, conducted with co-researchers on an online video communication platform. Through conducting these two studies, we found three strategies that we believe will increase the uptake of this research for policymakers, funding bodies and other researchers. The strategies concern research agendas, structured methodological guidance, and allocation of funds. When planning out qualitative research projects about death and
Journal of applied research in intellectual disabilities : JARID, 2017
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. Thirteen papers were identified following a systematic review of six databases. 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. A more open culture around issues of death, dying and bereavement in intellectual disability settings is essential and could be promoted ...