Background
The health of individuals is partly dependent on their relationships and the social structures in which they live. [4] Palliative care is an approach to healthcare that seeks to optimise quality of life for the person and their family and carers. A return to a public health approach in delivering palliative care services is suggested to better meet social challenges such as isolation, inequity of access to services and spirituality, while maintaining dignity in dying. [7] It is proposed that social effects of illness and dying may actually be best managed by friends or community members rather than healthcare professionals. [4,7]
This page highlights the benefits of social support systems for palliative care recipients and the need for more robust evidence on this topic.
Readers may also find pages on supporting Family Carers useful.
Evidence Summary
A central philosophy to palliative care is the recognition of the family and carers as inclusive to the care approach, however, the literature suggests the support network should be wider still. Sociological research looking at supportive environments for people with life-limiting illness and their carers has found relationships between community characteristics, health and wellbeing and health access. [4,7] Social support can be represented at a structural level such as organised programs utilising cognitive behavioural or mindfulness techniques; or more informal support groups and services as well as the support offered by people within the community.
Arts, cultural, religious and entertainment programs were found to foster trust, social inclusion and self-esteem to the people accessing them. [1,2,4] Hospice day-care programs were particularly well received, offering an outlet to be ‘normal’ and connect with other likeminded people whilst feeling secure in the environment and availability of medical staff. [1,8] As an alternative, more informal online blogging and networking sites were also successful in fostering social networks and empowering some individuals to be more active in their health management. [4,5]
However, it is important to realise that the availability of social support does not mean social isolation does not still occur. Often formalised support groups or programs are biased towards the dominant culture or language within the health context, marginalising culturally and linguistically diverse (CALD) groups. [4] In addition, older lesbian, gay and bisexual adults and individuals from lower socioeconomic groups are more likely to have difficulties with trust and less likely to interact with organised support groups. [4,9] This compounded by possible age-related barriers and older adults feeling external supports are less physically accessible, while also not possessing the skills to engage in online formats, can mean they continue to feel isolated from external social support. [4] It is therefore important to tailor support to the individual, their budget and needs which may require additional arrangement for transport and language services. [6] Equitable access and recognition of these person-centred needs of older people forms part of the Aged Care Diversity Framework. [10]
The National Institute for Health and Care Excellence (NICE) guidelines for ‘Older people with social care needs and multiple long term-conditions’, [6] state that a named coordinator should be responsible for assisting to prioritise the support needs for the individual; and could include psychological, emotional, social, sexual, spiritual and cultural needs or help with sight, hearing and communication or adjustment of their environment. Issues relating to wellbeing is expected to be different for older adults living in the community to those who are living in residential aged care. [3] The guidelines identify the importance of people being able to be cared for in their own home, being able to take part in preferred activities and interests which may include linking in with community services. The support plan should aim to be individualised but designed to assist in reducing isolation and distress to the individual. [6] Where social support is being sought in a residential aged care environment, NICE guidelines recommend looking at how the immediate environment supports social interaction, peer support and activities, to reduce feeling of isolation. [6]
Quality Statement
Overall, the evidence contributing to this topic is of poor quality, and of low applicability to older adults in a palliative care setting.
Page updated 17 June 2021