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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] Professional and 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]
However there is little agreement in the literature about the definition of what constitutes social support. [6] Some research conceptualises and quantifies social support; such as the numbers of relationships for example. [7] The patient’s perception of the quality of social support is recognised as important too. [7] Whereas more formal psychosocial intervention delivered by health professionals is also interpreted as support – as is support provided by family and friends. [8-9] Furthermore social support is conceptualised as instrumental support including both financial and assistance with tasks, emotional/appraisal support, information, companionship, and self-esteem support. [10]
What seems to be important when considering social support is understanding the patient’s perception of support.
Social support: the palliative context
- Whether the patient with cancer has support or feels supported are major factors in how they manage socially, spiritually, physically and emotionally. [9]
- Certain points along someone’s life, including transition from active or curative care to palliative care, requires further information appraisal by both themselves and family caregivers. [9]
- Tearfulness, fear and anger are common emotional reactions to living with a life threatening illness and professional staff may be challenged to discussing concerns with patients as they may feel out of their depth. [9]
Important contributing factors
- Patients from rural and isolated communities who have travelled for treatments and services may have experienced greater disruption of family and social life. [9]
- Past history of mental illness and substance abuse can limit social support availability. [11]
- Family distress or dysfunction can undermine effective social support. [11]
- Families need adequate information and support in the early phase of patient’s serious illness and treatment. [12]
When they do not receive this, they have greater needs, less trust and confidence in the health care system. [13-14]
- The kind of support required by patients can include attention to their spiritual needs as integral elements of their care. [15]
- Health professionals, particularly physicians, are perceived as important sources of support for patients and their families in time of serious illness. [16-18]
- Family caregivers can be helped to seek support for themselves from other family members and friends and health professionals. [3]
What is known
- Any patient who perceives that they have inadequate support are likely to experience greater psychosocial distress. [9]
- Children and partners of patients can experience equal or even higher levels of distress in relation to patients with cancer. [9]
- Men and women may require different types of support strategies. [9]
- Peer support groups are effective at increasing perception of social support for patients who feel unsupported. [9]
- Community services that support the patient and family at home must be provided early in order to enable optimum quality of life and quality of care. Timely assessment is therefore crucial. [1, 19]
- There is an association between specific personality types, coping styles and psychological distress and HIV progression – but no relationship between social support and HIV progression. [10]
Active research areas / controversies
Multidisciplinary agreement is needed on the conceptualisation of the term ‘social support’. [20]
More research is needed to understand which peer support programs are effective for which populations. [21]
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. [22]
Understanding the perspectives of problems and needs of children and adolescents is still being researched. [23]
Finding out more
Clinical practice guidelines for the psychosocial care of adults with cancer
Related CareSearch pages
Existential distress
Dignity conserving care
Suffering
References
- 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. Palliative Medicine. 2007 Sep;21(6):507-17.
- Burns CM, Craft PS, Roder DM. Does emotional support influence survival? Findings from a longitudinal study of patients with advanced cancer. Supportive Care in Cancer. 2005 May;13(5):295-302
- McMillan SC. Interventions to facilitate family caregiving at the end of life. Journal of Palliative Medicine. 2005;8 Supp 1:S132-9.
- 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.
- Stoltz P, Uden G, Willman A. Support for family carers who care for an elderly person at home – a systematic literature review. Scandinavian Journal of Caring Sciences. 2004 Jun;18(2):111-9.
- Gallant M The Influence of Social Support on Chronic Illness Self-Management Health Education and Behaviour, 2003 30; (2) 170 – 195
- Patient Reported Outcome Measurement Information System Project Domain definitions at http://www.nihpromis.org/default.aspx
- Devine EC,Westlake SK. The effects of psychoeducational care provided to adults with cancer: meta-analysis of 116 studies. Oncol.Nurs.Forum 1995;22:1369-81.
- National Breast Cancer Centre and National Cancer Control Initiative. 2003. Clinical practice guidelines for the psychosocial care of adults with cancer. National Breast Cancer Centre,Camperdown,NSW.
- Chida Y, Vedhara K. Adverse psychosocial factors predict poorer prognosis in HIV disease: A meta-analytic review of prospective investigations. Brain, Behavior, and Immunity. 2009 May;23(4):434-445.
- Lictenthal W, Kissane D, The management of Family Conflict in Palliative Care, Progress in Palliative Care, 16: 1 2008 pp 39-45
- Clayton JM, Hancock KM, Butow PN, Tattersall MH, Currow DC; Australian and New Zealand Expert Advisory Group, et al. Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers. Med J Aust. 2007 Jun 18;186(12 Suppl):S77, S79, S83-108.
- Andershed B. Relatives in end-of-life care – part 1: a systematic review of the literature the five last years, January 1999-February 2004. Journal of Clinical Nursing. 2006 Sep;15(9):1158-69.
- Ohlen J, Andershed, Berg C, Frid I, Palm CA, Ternestedt BM, et al. Relatives in end-of-life care- part 2: a theory for enabling safety. Journal of Clinical Nursing. 2007 Feb;16(2):382-90
- Hayley DC, Sachs GA. A brief history and lessons learned from twin efforts to transform medicine. Clinics in Geriatric Medicine. 2005 Feb;21(1):3-15
- 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. Journal of Pain & Symptom Management. 2003 Mar; 25(3):236-46.
- Kristjanson LJ, White K. Clinical support for families in the palliative care phase of hematologic or oncological illness. Hematology-Oncology Clinics of North America. 2002 Jun;16(3):745-62.
- Skilbeck J, Payne S. Emotional support and the role of Clinical Nurse Specialists in palliative care. Journal of Advanced Nursing. 2003 Sep;43(5):521-30.
- Thielemann P. Educational needs of home caregivers of terminally ill patients: literature review. American Journal of Hospice & Palliative Care. 2000 Jul-Aug;17(4):253-7.
- Nausheen B, Gidron Y, Peveler R, Moss-Morris R, Social Support and cancer Progression :A systematic review, Journal of Psychosomatic Research 67 (2009) 403–415
- 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.
- 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 & Social Care in the Community. 2004 Nov;12(6):488-503.
- Ruland C Hamilton G, Schjødt-Osmo B The Complexity of Symptoms and Problems Experienced in Children with Cancer: A Review of the Literature, Journal of Pain and Symptom Management, 2009;37:403-418
This page was created on 23 May 2008.
Last updated 19 July 2010*
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