There is little agreement in the literature about the definition of what constitutes social support. [6,7] Definitions range from the formal psychosocial interventions delivered by health professionals to the informal support provided by family and friends. [6-8] Social support is also conceptualised as instrumental support including both financial and assistance with tasks, emotional / appraisal support, information, companionship, and self-esteem support. [9] An individual’s perception of the quality of social support is recognised as important.
Palliative care aims to provide a holistic approach to supporting people with life-limiting illnesses and this, therefore, includes the social aspects of a life. The social components of a person’s life have the ability to either contribute to or alleviate suffering. [6] While a person’s own reaction to their life-limiting illness may lead to social isolation, their family and carers can also be affected and require social support. [10] Social isolation has been linked to poorer quality of life in patients but the impact on carers lacks research. [11]
Treatment
Social support is associated with improved well-being and has been shown to improve outcomes in patients with advanced cancer. [3] A recent systematic review examining the effectiveness of palliative care interventions offering social support found that while there are a number of studies showing improvement in patient well-being, there are issues with the quality of the evidence. [6] There is limited evidence supporting the type of social support interventions that can be provided but many appear to be professionally led with some community input. [12] Peer support has been shown to be beneficial and provide positive outcomes for people with advanced cancer. [13] The role of social media, in supporting adolescents and young adults with serious illness can be a useful tool but there is limited research to support firm recommendations for practice. [14] No matter how an intervention is delivered there is a direct correlation between the perceived level of social support and the positive outcomes of that support. [15] When a person feels they have received social support they are more likely to report a reduction in the burden they experience, no matter how much support they receive. [15]
Family distress or dysfunction can undermine effective social support. [16] A number of studies have demonstrated that family and carers often have unmet social support needs. [12] Families need adequate information and support in the early phase of a patient’s serious illness and treatment as well as ongoing support. [17] When they do not receive this, they have greater needs, and less trust and confidence in the health care system. [18,19] Social support is also one of the few modifiable factors following bereavement, and individually developed programs have been shown to provide positive outcomes for those grieving. [20] While health professionals, particularly physicians, are perceived as important sources of support for patients and their families in time of serious illness, they too can require social support. [17,21] Children and partners of patients can experience equal or even higher levels of distress in relation to patients with a life limiting illness. [22] Caring for a dying child can be particularly stressful and providing psychosocial support to these families earlier has been shown to have beneficial outcomes. [8] There are also unique groups of carers, such as those caring for parents with Huntington’s disease which may have particular social support needs not seen in other cohorts. [23] Individual assessment and tailored programs provide the best outcomes.
Practice Implications
- There is little agreement about the definition of what constitutes social support, it ranges from formal psychosocial interventions delivered by health professionals to informal support provided by family and friends and can be emotional, financial or simple companionship.
- In some cases a person’s own reaction to their life-limiting illness may lead to social isolation, their family and carers can also be affected and require social support.
- Social support is associated with improved well-being and has been shown to improve outcomes in patients with life-limiting illnesses.
- There is limited evidence supporting the type of social support interventions that can be provided but many appear to be professionally led. An individual’s perception of the quality of social support is recognised as important.
- Social support can be of benefit to families and health care professionals as well.
Evidence Gap
- Multidisciplinary agreement is needed on the conceptualisation of the term ‘social support’. [6,24]
- More research is needed to understand which peer support programs are effective for which populations. [25]
- Few studies examining the impact of daily living assistance, formal and informal on the quality of life of patients and their caregivers have been undertaken in Australia. The relationship of the type and quality of social care offered within the local community has only rarely been charted. [26]
- Understanding the perspectives of problems and needs of children and adolescents is still being researched. [27]
- The role of social support in the holistic care of people with cancer has been the focus of much research, how people with chronic illnesses adapt and the social supports they require lacks evidence. [28,29]