The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review

Abstract

Background: There is evidence that people with intellectual disabilities experience healthcare inequalities, including access to specialist palliative care, but to date, there has not been a systematic review of empirical evidence. Aim: To identify the palliative care needs of adults with intellectual disabilities and the barriers and facilitators they face in accessing palliative care. Design: Systematic review using a narrative synthesis approach (International prospective register of systematic reviews (PROSPERO) registration number: CRD42019138974). Data sources: Five databases were searched in June 2019 (MEDLINE, Embase, PsycINFO, the Cochrane library and CINAHL) along with hand searches and a search of the grey literature. All study designs were included. Results: A total of 52 studies were identified, all of which were conducted in high-income countries, the majority in the United Kingdom ( n = 28). From a total of 2970 participants across all studies, only 1% were people with intellectual disabilities and 1.3% were family members; the majority (97%) were health/social care professionals. Identified needs included physical needs, psychosocial and spiritual needs, and information and communication needs. Barriers and facilitators were associated with education (e.g. staff knowledge, training and experience), communication (e.g. staff skill in assessing and addressing needs of people with communication difficulties), collaboration (e.g. importance of sustained multidisciplinary approach) and health and social care delivery (e.g. staffing levels, funding and management support). Conclusion: This review highlights the specific problems in providing equitable palliative care for adults with intellectual disabilities, but there is a lack of research into strategies to improve practice. This should be prioritised using methods that include people with intellectual disabilities and families.

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

“…51 With time, healthcare professionals may better understand the person’s communication method 52 and adapt the information offered, thereby reducing concerns associated with talking about dying and death. While it is acknowledged that palliative care staff have perennial time challenges, and experience other challenges to rapport-building including barriers to accessing, and late referrals to end-of-life care, 10,53,54 allocation of additional appointments and longer appointment times with people with intellectual disability, might offer one possible solution. It is also important for palliative care staff to be mindful of creating a consistent and familiar environment for the person where possible.…”

“…Research on the experiences of people with intellectual disability and their caregivers remain limited. 10,16,41 Available studies are focused on people with mild to moderate intellectual disability, 41,74 specific components of palliative care such as advance care planning, 20,75 and comprise smaller numbers of participants. 20,52 A more comprehensive research agenda on the needs of people with intellectual disability and their caregivers in palliative care, across all levels from policy to practice, is urgently required.…”

“…For example, it would be useful for areas of future research to focus on policy or guidelines to facilitate end-of-life communication with this patient group, explore the experience of people with more severe intellectual disability, and examine the effectiveness of strategies to improve practice. 10 Such strategies may include intellectual-disability-specific training to increase palliative care staff’s confidence and ability to talk about dying and death, and practical strategies to facilitate communication with people who use non-verbal communication strategies.…”

“…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.…”

“…8 A systematic review of the palliative care needs of this patient group highlighted the numerous barriers to accessing generalist and specialist palliative care services for this population, including poor referral rates, diagnostic overshadowing and late diagnosis, as well as limited collaboration between services and caregivers. 10…”