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Social Support - Synthesis

Introduction

Social support is a key component of physical and mental health and is gained through interpersonal interactions. These interactions may include emotional support, companionship, practical assistance, and information/advice. Opportunities for interpersonal interactions may become limited for older people and people with a life limiting condition due to declining health and physical deterioration, putting them at risk of reduced social support and isolation. [1,2]

Quality Statement

Of the literature relevant to this topic of social support, eight systematic reviews were retrieved, although most were of low quality. With the exception of five reviews, the included studies lacked a wholly palliative care focus and quality scoring suffered due to poor reporting on the study methodology or synthesis of the results. Despite this, all reviews with some relevance to the topic were included to inform the reader on what research has been conducted, and where the gaps in research exist. Two guidelines were included in the review. [3,4] The NICE guideline was of high quality and had applicability to an Australian setting, and although not palliative-care-specific, end of life was referred to throughout. [4]

Evidence Synthesis

A number of themes emerged from the evidence with overlap between the systematic reviews and guidelines pertaining to social support of older adults receiving palliative care. A systematic review by Bradley et al. [5] identified 12 articles pertaining to the psychosocial experiences of palliative care recipients attending a specialist day care program. Specialist day care programs provide rehabilitation, management and monitoring of symptoms and provision of psychosocial support. Psychosocial denotes both the psychological and social aspects of a person’s life. Psychological characteristics include emotions, thoughts, attitudes, motivation and behaviour while social aspects denote the way in which a person relates to and interacts with their environment. [6,7] Support for each of these is needed as part of a holistic palliative care plan. [5]

In their thematic analysis, Bradley et al. [5] identify six themes deemed important by individuals receiving support within a specialist palliative day care setting:

  • person-centred care [4,5]
  • social support [4,5,8,9]
  • change of scenery [4,5]
  • isolation [4,5,10]
  • communication [4,5,10-12]
  • activities [4,5,8,10,11].

Each theme had a widely accepted meaning in terms of how quality of life was impacted and is mirrored in several other reviews included as part of this synthesis.

Person-centred care

Person-centred care was a recurrent theme in the systematic review by Bradley et al. [5] with attendees at the day care program feeling welcomed and safe, knowing that medical professionals were on hand should they be required. For many, attending activities away from the home and with likeminded people allowed care recipients to feel ‘normal’ and increased feelings of self-worth. [5] NICE guidelines also referred to the importance of individualisation of support and how well community programs may be suited to their needs. [4] The Aged Care Diversity Framework also refers to the need for older Australians to have access to tailored care to meet their individual needs and suggests achieving this through acknowledgment of their diverse characteristics, background and life experiences. [13]

Social support

‘Meeting people’ was described as one of the most important aspects of attending a palliative day care program, allowing older adults to feel they could cope with their problems and have some control and independence again. The program created a sense of community and helped normalise experiences for participants. [5] However, formalised support groups or programs are often biased towards the dominant culture or language within the health context, thus often marginalising culturally and linguistically diverse (CALD) groups. 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. [2]

In a systematic review by Black, [8] a common theme was the importance of sense of worth and social standing during end of life and the importance of feeling empowered, which can often be compromised by the symptoms of a terminal illness. However, a review by Sallnow et al. [9] recognised that while having a community engaged in end-of-life support is desirable, this also requires some education and support of volunteers. 

Change of scenery

In addition to feeling safe and welcomed, palliative care recipients were receptive to a change of scene and the feeling of being ‘bound’ within their usual place of care and their role of ‘sick person’. [5] NICE guidelines recognise the importance of having a nominated person to help coordinate access to respite programs or activities within the community, such as specialised transport or equipment which might be difficult to source as an informal caregiver. [4]

Isolation

Much like the theme of change in scenery, the day care program evaluation in Bradley et al. [5] found that attending activities away from the home was a highlight and offered a different outlook and a feeling of being ‘free’. In an environment where all attendees were of similar experience, care recipients felt more ‘understood’ and when potentially distanced from loved ones and family, were more emotionally supported by these likeminded people and staff. [4,5]
Research shows there is an association between social isolation and psychological wellbeing. Issues relating to wellbeing are expected to be different for older adults living in the community compared to those who are living in residential aged care. [1] 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. [4] They recommend strategies to make social connections with other older adults easier by ensuring people can hear conversations which may include use of technology such as IT platforms or hearing loops. In addition, they support the use of befriending schemes for those people without relatives to visit and intergenerational projects. [4]

Communication

‘A quiet time to chat’ was rated highly in the evaluation of a palliative day care program [5], particularly with others that care recipients felt they could be open and talk freely with again reinforcing a feeling of normality. In situations where older adults were not able to access health professionals or attend support groups in person, studies evaluated by Atherholt et al. [11] found that computer-based technologies were a useful way of delivering psychosocial care. [10,11] In particular social networking sites or personal blogs were useful in fostering broader social networks and improving self-esteem; [10,12] however Lewis et al. [11] caution that technology and support groups or programs can also be alienating for culturally and linguistically diverse (CALD) groups, or older adults, who may not have the language or technical skills to participate and therefore feel more isolated.

Activities

Activities were rated as less important than some other attributes of a day care program for palliative care recipients, but diversional activities were valued by some as a social outlet. [5] Activities were more likely to offer a sense of pride and increase self-esteem and self-worth, [10] particularly when the products were able to be sold to raise money or gifted to friends or family, [5] and could be likened to the sense of worth or purpose of being able to contribute to family life. [8] Similarly, value was put on the ability to attend trips or exercise activities, although of those studies included in the review by Bradley et al., [5] craft activities were preferred over keep fit classes and social outings.

Spiritual needs

Although not highlighted in the review by Bradley et al., [5] spirituality was raised in the NICE guidelines [4] and American Academy of Hospice and Palliative Medicine Clinical Practice guidelines. [3] The guidelines recognise some individuals may identify as spiritual rather than religious, and it should be recognised these individuals also require support.

Having religious or spiritual beliefs (that do not necessarily need to be of a particular religion) can be associated with perceived greater social support. The National Consensus Project Clinical Practice Guidelines (4th edition) suggest that spirituality could be defined as ‘a dynamic and intrinsic aspect of humanity, through which individuals seek meaning, purpose and transcendence and experience relationships to self, family, other, community, society, and the significant or sacred’. [3,14] Through the trajectory of a person’s illness, spiritual needs may change particularly as prognosis or goals of care change. Spiritual screening of every patient and their family is recommended to be conducted on a regular basis with an emphasis on all team care members to recognise spiritual distress and attend to those within their scope of practice. [3,14] This could extend to referral to a community agency, chaplain or a team member with the appropriate skills [14] or even just facilitating attendance to church or spiritual/religious support groups within the community.

The section on Spiritual Care may be of interest.

Summary

Wellbeing and social support for the palliative care recipient can be optimised by nominating a coordinator with whom the older adult and their family can be linked in with local support services or groups. Where isolation is likely to be an issue, the use of technology and facilitating day visits to respite or organised activities can be particularly useful in improving social support and individual self-esteem as well as health outcomes. It is important to recognise that minority groups such as older adults including older people who are lesbian, gay and bisexual (LGB), individuals from lower socioeconomic groups, and those from a culturally and linguistic diverse (CALD) group, may have more difficulty linking in with mainstream services and may need additional support strategies to promote community engagement and to feel socially supported. A health model that integrates community with tertiary care in palliative care is desirable to enhance the social support available to the growing number of palliative care recipients as well as their informal carers.

Evidence Gaps

Overall, there is a lack of quality evidence and studies addressing social support and evaluation of relevant interventions. Research is needed to address the following questions:

  • What is the effect of changing bereavement practices in residential aged care?
  • How does the aged care workforce adapt practice and provide social support with the diversity of residents in aged care facilities – older people with comorbidities, younger people with long-term disability, younger people with dementia?
  • What are impacts in rural aged care where the community is smaller, and everyone is connected or related? How do people in aged care in these areas look after themselves whilst supporting others in a close community?
  • What are the particular needs for social support for LBGTI communities?
  • Evaluation and provision of social support to CALD groups and older adults receiving palliative care.

 

Page updated 18 June 2021

  • References

  1. Bradley N, Lloyd-Williams M, Dowrick C. Effectiveness of palliative care interventions offering social support to people with life-limiting illness-A systematic review. Eur J Cancer Care (Engl). 2018 May;27(3):e12837. doi: 10.1111/ecc.12837. Epub 2018 Mar 24.
  2. Fish J, Weis C. All the lonely people, where do they all belong? An interpretive synthesis of loneliness and social support in older lesbian, gay and bisexual communities. Qual Ageing Older Adults. 2019;20(3):130-42.
  3. National Coalition for Hospice and Palliative Care. Clinical Practice Guidelines for Quality Palliative Care, 4th edition. Richmond, VA: National Coalition for Hospice and Palliative Care; 2018.
  4. National Institute for Health and Care Excellence (NICE) (UK). Older people with social care needs and multiple long-term conditions. NICE; Nov 2015. [updated 2020 Jul; cited 2021 Jun 18];26 p.
  5. Bradley SE, Frizelle D, Johnson M. Patients' psychosocial experiences of attending Specialist Palliative Day Care: a systematic review. Palliat Med. 2011 Apr;25(3):210-28.
  6. Bern-Klug M. Psychosocial Concerns in the Context of Geriatric Palliative Care in Nursing Homes. Top Geriatr Rehabil. 2011;27(1):62-70. DOI: 10.1097/TGR0b013e3181ff698f.
  7. Vizzotto ADB, de Oliveira AM, Elkis H, Cordeiro Q, Buchain PC. Psychosocial Characteristics. In: Gellman MD, Turner JR, editors. Encyclopedia of Behavioral Medicine. New York: Springer New York; 2013. p. 1578-80.
  8. Black J. What are patients' priorities when facing the end of life? A critical review. Int J Palliat Nurs. 2011 Jun;17(6):294-300.
  9. Sallnow L, Richardson H, Murray SA, Kellehear A. The impact of a new public health approach to end-of-life care: A systematic review. Palliat Med. 2016 Mar;30(3):200-11.
  10. Lewis JM, DiGiacomo M, Luckett T, Davidson PM, Currow DC. A social capital framework for palliative care: supporting health and well-being for people with life-limiting illness and their carers through social relations and networks. J Pain Symptom Manage. 2013 Jan;45(1):92-103.
  11. Artherholt SB, Fann JR. Psychosocial care in cancer. Curr Psychiatry Rep. 2012 Feb;14(1):23-9.
  12. Ngwenya NB, Mills S. The use of weblogs within palliative care: a systematic literature review. Health Informatics J. 2014 Mar;20(1):13-21.
  13. Aged Care Sector Committee Diversity Sub-group. Aged Care Diversity Framework (325MB pdf). Canberra: Commonwealth of Australia, Department of Health; 2017.
  14. Ferrell BR, Twaddle ML, Melnick A, Meier DE. National Consensus Project Clinical Practice Guidelines for Quality Palliative Care Guidelines, 4th Edition. J Palliat Med. 2018 Dec;21(12):1684-1689. doi: 10.1089/jpm.2018.0431. Epub 2018 Sep 4.