Social support

Evidence summary

Social support in palliative care refers to the network of relationships and resources available to patients and their families to provide emotional, informational, and practical assistance during the life-limiting illness journey. It includes support from family members, friends, healthcare professionals, and community resources, aiming to enhance the quality of life, alleviate stress, and ensure that the patient, family and carer physical, emotional, and social needs are met. [1,2]

Social support for individual patients, their families and carers includes empathy, trust and caring (emotional support); advice, suggestions and information (informational support); and tangible aid and services (practical support). [1,2] These forms of support are important in palliative care settings as they help reduce the psychological and physical burdens on both patients and family carers, improving their overall quality of life. [1,2]

The need for social support in palliative care arises from the extensive demands placed on patients and family carers. Emotional support is vital for both groups, potentially mitigating feelings of isolation, depression and anxiety that often accompany serious illness and caregiving. [1,2] This support can be delivered through structured interventions, such as counselling or peer support groups, but it also involves how care is delivered. [1,2] The presence of a safe, open, and trusting relationship with healthcare providers offers emotional support, allowing patients and carers to feel heard, ask questions, and experience validation. [1,2] It is often not just about what is said, but how care is delivered—with time, empathy, and the opportunity for patients and carers to feel normalised and supported in their experience. [2]

Informational support is necessary to help patients and family carers manage the overwhelming amount of information related to the patient’s condition and care needs. [3] While providing comprehensive informational resources, such as clear communication, written materials, or online tools, is valuable, the process involves more than simply handing over information. [3,4] It requires healthcare providers to engage with patients and families through an assessment process to understand their specific informational needs and their readiness to receive information. For example, some families may wish to discuss end-of-life planning or funeral arrangements early on, while others may not be ready for such discussions. By tailoring the approach and ensuring patients and carers feel comfortable with the content, healthcare providers can empower families with the necessary knowledge, potentially alleviating stress and improving care outcomes. [4] This shift reflects a growing understanding of the importance of equipping both patients and family carers with detailed knowledge to improve caregiving effectiveness. [3,4]

Practical support, including assistance with daily tasks, financial aid and respite care, is essential for reducing the physical and logistical burdens on patients and family carers. [5,6] The recognition of practical support needs has increased, especially as home-based palliative care becomes more prevalent. [5] Practical support can alleviate physical strain, allowing family carers to concentrate on providing quality care and patients to focus on their well-being. [6] Addressing these practical challenges highlights the evolution in recognising and responding to the needs of both patients and family carers. [5,6]

Health professionals ought to be aware of the importance of social networks and community resources, such as support groups and outreach programs, in providing both emotional and practical support for people with palliative care needs. [7] By connecting patients, and their families and carers, to these resources, health professionals may help reduce the sense of isolation that can negatively impact a patient’s well-being during treatment. [7] There is also the potential value in considering social prescribing, where health professionals guide patients to engage with community services that could enhance their social connections. [7] This approach can contribute to more comprehensive care, ensuring that patients receive support beyond just their medical or physical needs.

Equity and access

Equity and access to social support in palliative care are influenced by various social and structural determinants. Lower-income families often face greater challenges in accessing adequate support services due to financial constraints, which exacerbates family carers burden and stress. [1,8] Geographic disparities also exist, with rural areas having fewer resources and support services available. [9] Efforts to improve equity in palliative care should focus on expanding awareness and access to resources, providing financial assistance and developing culturally appropriate support programs. [2]

Aboriginal and Torres Strait Islander peoples often face unique barriers in accessing social support in palliative care due to historical and ongoing systemic inequities, cultural differences, and geographic isolation. [10] Culturally appropriate palliative care programs that respect traditional practices and involve community leaders are essential for improving care outcomes. [11] Providing education and training for healthcare providers on the cultural needs of Aboriginal and Torres Strait Islander peoples could improve trust and engagement with palliative care services [12] For example, incorporating traditional healing practices alongside conventional medical treatments can make palliative care more acceptable and effective for these communities. [11] To bridge communication gaps and ensure patients and families understand their care options, interpreters and culturally tailored resources are essential. [13] Additionally, ensuring that healthcare providers develop culturally safe practices can further improve engagement with Aboriginal and Torres Strait Islander peoples and promote better care outcomes.

In Culturally and Linguistically Diverse (CALD) populations, barriers to accessing social support services often stem from language differences, cultural misunderstandings, and distrust of the healthcare system. [13] Engaging community leaders and offering culturally specific support groups can help to bridge these gaps. Culturally tailored communication and healthcare materials can further support CALD patients and families, ensuring they understand their care options and feel empowered in making decisions about their care. [13]

LGBTQI+ individuals may experience discrimination and a lack of understanding within healthcare settings, impeding their access to social support in palliative care. [14] Inclusive and affirming care practices that respect the identities and experiences of LGBTQI+ patients are necessary for equitable palliative care. [14] Training healthcare providers on LGBTQI+ issues and creating supportive environments within healthcare settings can enhance the comfort and trust of LGBTQI+ patients, encouraging them to seek and receive palliative care. [14] Compared to other underserved groups, LGBTQI+ individuals often require specific attention to privacy and respectful communication, which are important for their psychological comfort and care quality. [14]

Rural and remote communities face distinct challenges in accessing social support within palliative care, largely due to geographic isolation, limited healthcare infrastructure, and a shortage of specialised healthcare providers. [15] Residents in these areas often must travel long distances to access social support services, which can be both time-consuming and financially burdensome. [15] Telehealth and digital interventions have emerged as important solutions, providing remote consultations, follow-up care, and support networks. [9] These technologies can enable continuous social support for patients and family carers in rural and remote areas without requiring travel, thereby improving access and reducing stress. [15] Additionally, rural and remote communities often rely on local healthcare providers who may lack specialised training in palliative care. Providing education and training for these providers can enhance their skills and ensure they can deliver high-quality social support. [15] Programs like PEPA (Program of Experience in the Palliative Approach) play an important role in addressing this by delivering education workshops across the country to help healthcare providers develop knowledge and skills in providing inclusive and culturally responsive palliative care. PEPA focuses on building confidence in healthcare providers to deliver high-quality palliative care to all Australians, including those in rural and remote areas. Community-based approaches, such as integrating social support into existing local health services and involving community health workers, can also address the unique needs of rural populations effectively. [15]

Care context

The context of care influences the type and effectiveness of social support provided to family carers and patients in palliative care settings. Acute care settings demand immediate and intensive support to manage the high stress and rapid pace that family, carers and patients experience. Structured support groups and professional counselling services can be beneficial in these environments to provide real-time emotional and informational support. [2,4] These interventions can assist family carers to navigate complex medical decisions and offer patients a sense of security and understanding during their hospital stay. By contrast, residential aged care homes (care homes) require continuous, long-term support strategies due to the chronic nature of caregiving responsibilities. This includes regular mental health assessments, respite care, and training programs for family carers to manage stress and maintain a high quality of life for both residents and carers. [16,17]

Older adults living alone with palliative care needs may depend heavily on non-kin carers, such as friends or neighbours, for essential social support. These carers provide emotional, practical, and social assistance, helping to alleviate the challenges and isolation faced by these individuals at the end of life. [18] However, non-kin carers often encounter considerable challenges, including limited access to formal support and resources. [18] Health professionals must recognise and support the role of non-kin carers by involving them in care planning and ensuring they have access to the necessary resources such as respite care, financial assistance, and community support networks. [18] Involving non-kin carers in decision-making processes and offering them support through healthcare services can improve the quality of care for older adults and reduce the strain on these informal carers. [18]

Carers of patients with non-cancer conditions, such as dementia, face unique challenges that necessitate specific support strategies. Tailored informational support is essential to help carers understand the progression of these conditions and the associated care needs. [16,17] Programmes designed to provide training on dementia care and managing behavioural issues can improve carers’ ability to cope with caregiving demands. [16] Practical support, such as assistance with daily tasks and access to respite care, may be helpful for alleviating the physical and emotional burden on carers. [16] Patients with cancer and their carers also face intense physical, emotional, and practical challenges that require comprehensive social support strategies. Emotional support helps both patients and carers cope with the stress and anxiety associated with a cancer diagnosis and treatment. [1] Informational support, including education about the disease, treatment options, and care management, empowers patients and carers to make informed decisions and manage the disease more effectively. [3] Practical support, such as assistance with daily activities, transportation to medical appointments and financial aid, is vital for alleviating the burden on carers and improving the overall quality of life for both patients and family carers. [6]

Paediatric palliative care presents unique challenges that require specialised social support strategies for both children and their families. The emotional and psychological needs of children with life-limiting conditions and their families are profound, necessitating comprehensive support systems. Integrating psychological support, play therapy and family counselling into paediatric palliative care may help address these needs. [9] Social support interventions in paediatric settings should also include educational support for children and their siblings to ensure continuity in their learning and development during treatment. [9] Providing practical support, such as assistance with transportation to medical appointments and respite care for parents, may reduce the stress and logistical burdens faced by families. [19] Financial concerns are often high for this population, as working-age parents may not anticipate time out of the workforce to care for their unwell child. This requires additional practical and informational support to help families navigate unexpected financial constraints. Assistance may include navigating human services like Centrelink, accessing superannuation and insurance, and engaging with charities to ease the financial burden. [19]

Implications for families and carers

Providing adequate social support in palliative care settings can improve the emotional, psychological and practical well-being of families and carers. Emotionally, caregiving is often taxing, potentially leading to stress, anxiety and depression. [17] Specific forms of social support, such as peer support groups, companionship from friends or community members, and informal networks of care, can help alleviate these emotional burdens by offering a platform for sharing experiences and providing a sense of solidarity. [2,4] These forms of social support can help maintain emotional stability, which is important for effective caregiving. [17] In paediatric palliative care, community-based support groups and informal social networks may play an important role in addressing the unique emotional needs of both children and their families, offering opportunities for social interaction and respite from caregiving stress. [9]

Practically, families and carers often face challenges in managing daily tasks, navigating healthcare systems and dealing with financial burdens. Informational support might empower family carers by providing essential knowledge on disease progression, treatment options and care management, thereby alleviating stress. [3,16] Practical support, such as assistance with transportation to medical appointments and access to respite care, is important in reducing the physical and logistical burdens on family carers, allowing them to focus more on emotional and psychological aspects of care. [5,6] Long-term approaches to support in care homes, including mental health assessments and respite care, are vital to preventing carer burnout and ensuring sustainable caregiving. [17] Tailored support strategies for family-centred approaches in paediatric palliative care can ensure comprehensive care that meets the developmental and emotional needs of children and their families, fostering a supportive environment for all. [16,19]