Social Support

Key Messages

  • Social support is part of a whole person approach in palliative care.
  • 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. 

Evidence Summary

Definition 

People who are aware that their lives have been shortened by life limiting diagnoses face enormous alterations and challenges to many aspects of their lives. [1-3] Professionals, family and community-based support can make a difference to the quality of people’s lives and an opportunity for people to remain in their homes and to minimize institutional admissions to hospital, hospice or nursing homes. [4,5]

Social support is a recognised resource developed through an individual's interpersonal interactions with others and may be made up of both physical support, emotional support and can be formal or informal. [6]

  

 

 

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Social Support
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Review Collection

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]
  1. Hancock K, Clayton JM, Parker SM, Wal der S, Butow PN, Carrick S, et al. Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review. Palliat Med. 2007 Sep;21(6):507-17.
  2. McMillan SC. Interventions to facilitate family caregiving at the end of life. J Palliat Med. 2005;8 Supp 1:S132-9.
  3. Applebaum AJ, Breitbart W. Care for the cancer caregiver: a systematic review. Palliat Support Care. 2013 Jun;11(3):231-52. Epub 2012 Oct 10.
  4. Gomes B, Higginson IJ. Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ. 2006 Mar 4;332(7540):515-21. Epub 2006 Feb 8.
  5. Stoltz P, Uden G, Willman A. Support for family carers who care for an elderly person at home - a systematic literature review. Scand J Caring Sci. 2004 Jun;18(2):111-9.
  6. 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.
  7. Michels CT, Boulton M, Adams A, Wee B, Peters M. Psychometric properties of carer-reported outcome measures in palliative care: A systematic review. Palliat Med. 2016 Jan;30(1):23-44. Epub 2015 Sep 25.
  8. Weaver MS, Heinze KE, Bell CJ, Wiener L, Garee AM, Kelly KP, et al. Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: An integrative review. Palliat Med. 2016 Mar;30(3):212-23. Epub 2015 Apr 28.
  9. Chida Y, Vedhara K. Adverse psychosocial factors predict poorer prognosis in HIV disease: A meta-analytic review of prospective investigations. Brain Behav Immun. 2009 May;23(4):434-45. Epub 2009 Jan 29.
  10. Bosco A, Schneider J, Coleston-Shields DM, Sousa L, Orrell M. Dyadic construction of dementia: meta-ethnography and behaviour-process synthesis. Aging Ment Health. 2019 Jun;23(6):651-659. doi: 10.1080/13607863.2018.1450836. Epub 2018 Mar 15.
  11. Greenwood N, Mezey G, Smith R. Social exclusion in adult informal carers: A systematic narrative review of the experiences of informal carers of people with dementia and mental illness. Maturitas. 2018 Jun;112:39-45. doi: 10.1016/j.maturitas.2018.03.011. Epub 2018 Mar 29.
  12. Chung A, Collier A, Gott M. Community-led and/or focused initiatives to support family carers within a palliative care context: An integrative review. Palliat Med. 2019 Feb;33(2):250-256. doi: 10.1177/0269216318813813. Epub 2018 Dec 5.
  13. Walshe C, Roberts D. Peer support for people with advanced cancer: a systematically constructed scoping review of quantitative and qualitative evidence. Curr Opin Support Palliat Care. 2018 Sep;12(3):308-322. doi: 10.1097/SPC.0000000000000370.
  14. Peat G, Rodriguez A, Smith J. Social media use in adolescents and young adults with serious illnesses: an integrative review. BMJ Support Palliat Care. 2019 Sep;9(3):235-244. doi: 10.1136/bmjspcare-2018-001646. Epub 2018 Dec 4.
  15. Del-Pino-Casado R, Frías-Osuna A, Palomino-Moral PA, Ruzafa-Martínez M, Ramos-Morcillo AJ. Social support and subjective burden in caregivers of adults and older adults: A meta-analysis. PLoS One. 2018 Jan 2;13(1):e0189874. doi: 10.1371/journal.pone.0189874. eCollection 2018.
  16. Lichtenthal WG, Kissane DW. The management of family conflict in palliative care. Prog Palliat Care. 2008 Feb 1;16(1):39-45.
  17. Franklin P, Arber A, Reed L, Ream E. Health and social care professionals' experiences of supporting parents and their dependent children during, and following, the death of a parent: A qualitative review and thematic synthesis. Palliat Med. 2019 Jan;33(1):49-65. doi: 10.1177/0269216318803494. Epub 2018 Oct 29.
  18. Andershed B. Relatives in end-of-life care--part 1: a systematic review of the literature the five last years, January 1999-February 2004. J Clin Nurs. 2006 Sep;15(9):1158-69.
  19. Ohlen J, Andershed B, Berg C, Frid I, Palm CA, Ternestedt BM, et al. Relatives in end-of-life care- part 2: a theory for enabling safety. J Clin Nurs. 2007 Feb;16(2):382-90.
  20. Logan EL, Thornton JA, Breen LJ. What determines supportive behaviors following bereavement? A systematic review and call to action. Death Stud. 2018 Feb;42(2):104-14. doi: 10.1080/07481187.2017.1329760. Epub 2017 Jun 8.
  21. Wenrich MC, Curtis R, Ambrozy DA, Carline JD, Shannon SE, Ramsey PG. Dying patients’ need for emotional support and personalized care from physicians: perspectives of patients with terminal illness, families, and health care providers. J Pain Symptom Manage. 2003 Mar;25(3):236-46.
  22. Paul S. Is Death Taboo for Children? Developing Death Ambivalence as a Theoretical Framework to Understand Children’s Relationship with Death, Dying and Bereavement. Child Soc. 2019 Nov;33(6):556-571. doi: 10.1111/chso.12352. Epub 2019 Jul 17.
  23. Parekh R, Praetorius RT, Nordberg A. Carers’ Experiences in Families Impacted by Huntington’s Disease: A Qualitative Interpretive Meta-Synthesis. Br J Soc Work. 2018 Apr;48(3):675-92.
  24. Ahluwalia SC, Chen C, Raaen L, Motala A, Walling AM, Chamberlin M, O'Hanlon C, Larkin J, Lorenz K, Akinniranye O, Hempel S. A Systematic Review in Support of the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care, Fourth Edition. J Pain Symptom Manage. 2018 Dec;56(6):831-870. doi: 10.1016/j.jpainsymman.2018.09.008. Epub 2018 Oct 31.
  25. Hoey LM, Ieropoli SC, White VM, Jefford M. Systematic review of peer-support programs for people with cancer. Patient Educ Couns. 2008 Mar;70(3):315-37. Epub 2008 Jan 10.
  26. Burns CM, Dixon T, Smith WT, Craft PS. Patients with advanced cancer and family caregivers' knowledge of health and community services: a longitudinal study. Health Soc Care Community. 2004 Nov;12(6):488-503.
  27. Ruland CM, Hamilton GA, Schjødt-Osmo B. The Complexity of symptoms and problems experienced in children with cancer: a review of the literature. J Pain Symptom Manage. 2009 Mar;37(3):403-18. Epub 2008 Aug 9.
  28. White K, Issac MS, Kamoun C, Leygues J, Cohn S. The THRIVE model: A framework and review of internal and external predictors of coping with chronic illness. Health Psychol Open. 2018 Aug 21;5(2):2055102918793552. doi: 10.1177/2055102918793552. eCollection 2018 Jul-Dec.
  29. Warner CB, Roberts AR, Jeanblanc AB, Adams KB.  Coping Resources, Loneliness, and Depressive Symptoms of Older Women With Chronic Illness. J Appl Gerontol. 2017 Jan 1:733464816687218. doi: 10.1177/0733464816687218. [Epub ahead of print]

Last updated 30 October 2019