Challenges in providing end‐of‐life care for people with intellectual disability: Health services access

Wark, Stuart; Hussain, Rafat; Müller, Arne; Ryan, P. Barry; Parmenter, Trevor R.

doi:10.1111/jar.12408

Cited by 29 publications

(25 citation statements)

References 39 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…8,49,53,54,65,[71][72][73] In addition, several studies highlighted the need to educate registered nurses in both hospital and community settings in caring for patients with intellectual disabilities at the end of life. 8,44,61,[74][75][76] Inadequate training can heighten communication fears, 67 lead to lack of confidence among staff 51 and elevated levels of stress. 45 An intellectual disability support worker commented in a focus group discussion that there was a tendency of staff in hospital settings to put patients with intellectual disabilities and palliative care needs into the 'too-hard basket'.…”

Section: Educationmentioning

confidence: 99%

“…45 An intellectual disability support worker commented in a focus group discussion that there was a tendency of staff in hospital settings to put patients with intellectual disabilities and palliative care needs into the 'too-hard basket'. 8 Contributing to this knowledge gap is the absence of formal protocols, policies and guidelines regarding endof-life care for people with intellectual disabilities. 45,55,62 A study examining guidelines in 11 European countries suggested that European national palliative care guidelines do not meet the needs of people with intellectual disabilities.…”

Section: Educationmentioning

confidence: 99%

“…5 With an ageing population comes a rising prevalence of chronic and age-related illness, and subsequently an increased need for palliative and end-of-life care. [5][6][7][8] Despite this trend, people with intellectual disabilities die approximately 25 years sooner than the general population. 9 Evidence from the World Health Organization (WHO) atlas of global resources for people with intellectual disabilities reveals that people with intellectual disabilities are often denied their right to health care, even in countries with a relatively high standard of living.…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

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

et al. 2020

View full text Add to dashboard Cite

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.

show abstract

Section: Educationmentioning

confidence: 99%

Section: Educationmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

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

et al. 2020

View full text Add to dashboard Cite

show abstract

“…Transport is very difficult, particularly for those in rural areas who need to travel for employment and services [ 18 , 27 ], and is an additional barrier to accessing social supports [ 28 ]. Individuals and their carers in rural areas often have to wait long periods of time for services or travel considerable distances to access them [ 29 ]. This poor availability and associated delays can then compound medical problems, due to complications that have arisen as a result of postponement of treatment and support [ 30 , 31 , 32 ], which in turn can increase the burden on caregivers.…”

Section: Introductionmentioning

confidence: 99%

Caregiving, Employment and Social Isolation: Challenges for Rural Carers in Australia

Hussain

Wark

Ryan

2018

IJERPH

Self Cite

View full text Add to dashboard Cite

Australia has one of the world’s highest life expectancy rates, and there is a rapidly growing need for informal caregivers to support individuals who are ageing, have chronic illness or a lifelong disability. These informal carers themselves face numerous physical and psychological stressors in attempting to balance the provision of care with their personal life, their work commitments and family responsibilities. However, little is known about the specific challenges facing rural carers and the barriers that limit their capacity to provide ongoing support. A cross-sectional survey composed of open-ended responses and demographic/socioeconomic measures used routinely by the Australian Bureau of Statistics (ABS) and the Australian Institute of Health & Welfare (AIHW) was used with a cohort of 225 rurally-based carers within New South Wales, Australia. Demographic questions specified the respondents’ age, gender, employment, caregiving status, condition of and relationship to the care recipient, postcode, residency status, and distance and frequency travelled to provide care. Open-ended comments sections were provided to allow participants to describe any issues and problems associated with caregiving including employment, travel, residency, carer support groups and any other general information. The results show that most rural carers were middle-aged women supporting a spouse or a child. Unpredictability associated with providing care exacerbated demands on carers’ time, with many reporting significant employment consequences associated with inflexibility and limited job options in rural locations. Specific issues associated with travel requirements to assist with care were reported, as were the impacts of care provision on the respondents’ own personal health. The majority of carers were aware of the social supports available in their local rural community, but did not access them, leaving the carers vulnerable to marginalisation. Problems associated with employment were noted as resulting in financial pressures and associated personal stress and anxiety for the caregivers. While this issue is not necessarily limited to rural areas, it would appear that the lack of opportunity and flexibility evident in rural areas would exacerbate this problem for non-metropolitan residents. The participants also identified specific barriers to the provision of care in rural areas, including the significant impact of travel. Access to support services, such as carer groups, were rarely accessed due to a mix of factors including inaccessibility, poor timing and a lack of anonymity. Financially, there was considerable evidence of hardship, and there is an urgent need for a comprehensive review of government and community-based support to better meet the needs of rural carers.

show abstract

“…(), McCallion et al. () and Wark, Hussain, Müller, Ryan, and Parmenter () documented a range of important problems with access to end‐of‐life health services.…”

Section: Policy Issuesmentioning

confidence: 99%

End of life and people with intellectual disability

Stancliffe

Wiese

Read

2017

Research Intellect Disabil

View full text Add to dashboard Cite

Challenges in providing end‐of‐life care for people with intellectual disability: Health services access

Abstract: Improved access to end-of-life services is urgently required across both rural and metropolitan areas. Development of specialist training and support models for both disability and general healthcare staff may assist to reduce some identified barriers.

Cited by 29 publications

References 39 publications

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

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

Caregiving, Employment and Social Isolation: Challenges for Rural Carers in Australia

End of life and people with intellectual disability

Contact Info

Product

Resources

About