End‐of‐life care research on people with intellectual disabilities: Challenges for proactive inclusion in an Irish context

Abstract

Accessible Summary• People with intellectual disabilities are living longer than ever before.• Although people with intellectual disabilities are living longer, they still suffer from many illnesses. This may reduce their lifespan, and they may die earlier than other people and therefore require good end-of-life care whatever age they die.• Views and opinions of people with intellectual disabilities are important in determining what is good care at the end of life.• Ethical and practical guidelines in relation to recruitment, obtaining consent, and having conversation around sensitive issues are clearly discussed in this paper. AbstractBackground: In recent times, people with intellectual disabilities are increasingly included in research studies; however, their participation in sensitive research such as palliative and end-of-life care is less frequent. The reasons for not including people with intellectual disabilities in these kinds of research studies are issues in relation to obtaining consent, difficulty of recruiting, and engaging and collecting relevant information. This paper aimed to provide insight into how people with intellectual disabilities could be proactively included in research which is sensitive to their unique needs.Method: This study included 13 people with mild and moderate intellectual disabilities and explored their end-of-life care needs from their perspectives. After obtaining appropriate ethical approval, the research process was commenced. Applying the constructive grounded theory approach, data were collected and analysed by using the constant comparative method. A story from the book Am I Going to Die was used to enhance the understanding of the concepts of death and dying while collecting data.Findings: Participants with intellectual disabilities were recruited by establishing a close relationship with service providers. Capacity to consent and informed consent were fostered by carefully explaining the research process through easy-to-read information, and the data collection process was successfully completed by having a person-centred approach.Conclusion: People with intellectual disabilities can be successfully included in research. This is possible when their diverse needs are carefully considered, and appropriately developed protocols which meet their needs in relation to their capacities and abilities are utilised. This approach requires a flexible and inclusive research process. | 71CITHAMBARAM eT Al.

Specialist palliative care staff’s varying experiences of talking with people with intellectual disability about their dying and death: A thematic analysis of in-depth interviews

“…3,16,37–39 Taken together, these findings indicate the need to prioritise specialised staff training for those working with this patient group in the death space. 2,4,21 Communication methods such as speaking slowly using straightforward terms, providing the person adequate time to process and answer the question, clarifying and repeating information, using visual and other non-verbal cues, 40 and providing the person with repeated concrete learning opportunities 41,42 and information in an accessible format 10 can help equip staff with effective skills to ‘pitch’ these conversations.…”

Does talking about end of life with adults with intellectual disability cause emotional discomfort or psychological harm?

“…There is consistent evidence of avoidance and protection by caregivers involving people with intellectual disability in dying and death (Cithambaram et al, 2019; Lord et al, 2017; Tuffrey‐Wijne & Rose, 2017; Wiese et al, 2015). This disenfranchisement encompasses (a) exclusion from advance‐care planning and end‐of‐life decision making (Kirkendall et al, 2017; Voss et al, 2019), (b) non‐involvement in funerals (Forrester‐Jones, 2013; McRitchie et al, 2014), (c) not being told of the terminal diagnosis and/or death of a friend or family member (Cithambaram et al, 2019; Forrester‐Jones, 2013), and (d) not being informed about their own dying (McKenzie et al, 2017; Ryan et al, 2011; Todd, 2013; Tuffrey‐Wijne et al, 2010, 2013). There are exceptions to this pattern of exclusion (Forrester‐Jones, 2013; McKenzie et al, 2017; McMaugh et al, 2017; McRitchie et al, 2014).…”

“…This conclusion was also true of individuals who experienced bereavement in recent years (McRitchie et al, 2014). In all studies, no/few participants experienced transient emotional discomfort that quickly resolved with usual emotional support (Cithambaram et al, 2019; Stancliffe et al, 2017).…”

“…Research has identified reasons for avoidance and protection, including (a) fear the person would become upset and/or be harmed psychologically, (b) difficulties with understanding, communication or concept of time, (c) caregiver discomfort, (d) lack of caregiver knowledge, skill, training or resources, (e) not knowing what to say and (f) absent/unclear disability service policies (Cithambaram et al, 2019; Lord et al, 2017; Ryan et al, 2011; Todd, 2013; Tuffrey‐Wijne et al, 2013; Tuffrey‐Wijne & Rose, 2017; Voss et al, 2019; Wiese et al, 2012, 2013, 2015). All these factors are important, but the current study's focus is the first—concern about causing distress or psychological harm.…”

“…Most studies asked adults with intellectual disability to talk with or answer questions from a researcher in a benign one‐off conversation about end of life generally, with recent bereavement and/or terminal diagnosis as participant exclusion criteria (Cithambaram et al, 2019; Forrester‐Jones, 2013; McEvoy et al, 2012, 2017; Stancliffe et al, 2017). None of these cross‐sectional studies examined everyday conversations with friends, family or caregivers about real end‐of‐life events.…”