Psychological and social profile of family caregivers on commencement of palliative care

Journal of Pain and Symptom Management

Volumn 41, Issue 3, 2011, Pages 522-534

  Hudson, Peter L ^a,b   Thomas, Kristina ^a   Trauer, Thomas ^a,c,d   Remedios, Cheryl ^a   Clarke, David ^c  

^a UNIVERSITY OF MELBOURNE   (Australia)

^b QUEEN'S UNIVERSITY BELFAST   (United Kingdom)

^c MONASH UNIVERSITY   (Australia)

^d ST VINCENT S HOSPITAL   (Australia)

Author keywords

bereavement; family caregivers; family carers; grief; Palliative care; psychological support; psychosocial; social support

Indexed keywords

ADULT; ANXIETY; ARTICLE; AUSTRALIA; CAREGIVER; DEMORALIZATION; DEPRESSION; FAMILY; FEMALE; GRIEF; HUMAN; MALE; MENTAL HEALTH; MORALITY; PALLIATIVE THERAPY; QUESTIONNAIRE; RISK FACTOR; SCORING SYSTEM; SELF REPORT; SOCIAL ASPECT; SOCIAL PSYCHOLOGY; SOCIAL SUPPORT;

ADULT; AGED; AGED, 80 AND OVER; AUSTRALIA; BEREAVEMENT; CAREGIVERS; CROSS-SECTIONAL STUDIES; FEMALE; HEALTH STATUS; HUMANS; LONGITUDINAL STUDIES; MALE; MIDDLE AGED; PALLIATIVE CARE; QUESTIONNAIRES; SOCIOECONOMIC FACTORS; STRESS, PSYCHOLOGICAL; YOUNG ADULT;

EID: 79952809915     PISSN: 08853924     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.jpainsymman.2010.05.006     Document Type: Article

References (53)

1. Monroe B, Olivere D. Communicating with family carers. In: Hudson P, Payne S, eds. Family carers in palliative care: A guide for health and social care professionals. New York: Oxford University Press, 2009:1-20.
2. World Health Organization, National cancer control programmes: policies and managerial guidelines, 2nd ed. Geneva: WHO, 2002.
3. Hudson P, Payne S. The future of family caregiving: research, social policy and clinical practice. In: Hudson P, Payne S, eds. Family carers in palliative care: A guide for health and social care professionals. New York: Oxford University Press, 2009:277-303.
4. Kurtz M, Kurtz J, Given C, Given B. Relationship of caregiver reactions and depression to cancer patients' symptoms, functional states, and depression - a longitudinal view. Soc Sci Med 1995;40:837-846.
5. Ramirez A, Addington-Hall J, Richards M. The carers. In: Fallon M, O'Neill B, eds. ABC of palliative care. London, UK: BMJ Books, 1998:208-211.
6. Barg F, Pasacreta J, Nuamah I, et al. A description of a psychoeducational intervention for family caregivers of cancer patients. J Fam Nurs 1998;44:394-413.
7. Rhodes P, Shaw S. Informal care and terminal illness. Health Soc Care Community 1999;7:39-50.
8. Adam J. Discharge planning of terminally ill patients home from an acute hospital. Int J Palliat Nurs 2000;6:338-345.
9. Hudson P. Positive aspects and challenges associated with caring for a dying relative at home. Int J Palliat Nurs 2004;10:58-66.
10. Stajduhar KI, Davies B. Death at home: challenges for families and directions for the future. J Palliat Care 1998;14:8-14. (Pubitemid 128639877)
11. Haley WE, LaMonde LA, Han B, Narramore S, Schonwetter R. Family caregiving in hospice: effects on psychological and health functioning among spousal caregivers of hospice patients with lung cancer or dementia. Hosp J 2001;15:1-18.
12. Zisook S, Shuchter SR. Depression through the first year after the death of a spouse. Am J Psychiatry 1991;148:1346-1352.
13. Hauser JM, Kramer BJ. Family caregivers in palliative care. Clin Geriatr Med 2004;4:671-688. (Pubitemid 39488030)
14. Grunfeld E, Coyle D, Whelan TJ, et al. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ 2004;170:1795-1801. (Pubitemid 38833404)
15. Prigerson HG, Bierhals AJ, Kasl SV, et al. Complicated grief as a disorder distinct from bereavementrelated depression and anxiety: a replication study. Am J Psychiatry 1996;153:1484-1486. (Pubitemid 26365466)
16. Stroebe M, Hansson R, Schut H, Stroebe W, eds. Handbook of bereavement research and practice: Advances in theory and intervention. Washington, DC: American Psychological Association, 2008.
17. Ray A, Prigerson H. Complicated grief: an attachment disorder worthy of inclusion in DSM-V. Grief Matters Aust J Grief Bereavement 2006;9:33-38.
18. Smith L, Kalus C, Russell P, Skinner TC. Exploring current service provision for prolonged grief disorder and suggestions for future advances. Mortality 2009;14:53-69.
19. Tomarken A, Holland J, Schachter S, et al. Factors of complicated grief pre-death in caregivers of cancer patients. Psychooncology 2008;17:105-111. (Pubitemid 351279860)
20. Ferrell B, Connor SR, Cordes A, et al. The national agenda for quality palliative care: the National Consensus Project and the National Quality Forum. J Pain Symptom Manage 2007;33:737-744. (Pubitemid 46783991)
21. National Institutes of Health, NIH State-of-the-Science conference statement: improving end of life care. Bethesda, MD: NIH, 2004.
22. Palliative Care Australia. Standards for providing quality palliative care for all Australians. Canberra, Australia: Palliative Care Australia, 2005.
23. National Institute for Clinical Excellence. Guidance on cancer services: Improving supportive and palliative care for adults with cancer. The manual. London, UK: National Institute for Clinical Excellence, 2004.
24. Arksey H, Corden A. Policy initiatives for family carers. In: Hudson P, Payne S, eds. Family carers in palliative care: A guide for health and social care professionals. New York: Oxford University Press, 2009:55-72.
25. Hudson P, Hayman-White K, Aranda S, Kristjanson LJ. Predicting family caregiver psychosocial functioning in palliative care. J Palliat Care 2006;22:133-140. (Pubitemid 44526007)
26. Harding R. Carers: current research and developments. In: Firth P, Luff G, Oliviere D, eds. Facing death: Loss, change and bereavement in palliative care, 1st ed. Maidenhead, UK: Open University Press, 2005:150-166.
27. Van Vorst RF, Crane LA, Barton PL, et al. Barriers to quality care for dying patients in rural communities. J Rural Health 2006;22:248-253. (Pubitemid 43894040)
28. Hudson P. A critical review of supportive interventions for family caregivers of patients with palliative-stage cancer. J Psychosoc Oncol 2004;22:77-92. (Pubitemid 41779278)
29. Harding R, Higginson I. What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliat Med 2003;17:63-74. (Pubitemid 36193223)
30. McMillan SC. Interventions to facilitate family caregiving at the end of life. J Palliat Med 2005;8:S132-S139.
31. Hudson P. A conceptual model and key variables for guiding supportive interventions for family caregivers of people receiving palliative care. Palliat Support Care 2003;1:353-365.
32. Kristjanson L, Lobb E, Aoun S, Monterosso L. A systematic review of the literature on complicated grief. Churchlands, WA: WA Centre for Cancer & Palliative Care, Edith Cowan University, 2006. Available from http://www6.health.gov.au/internet/main/publishing.nsf/Content/ CA2574CE001979C5CA25716B007662BA/$File/grfall.pdf. Accessed October 2, 2010.
33. Eagar K, Owen A, Williams K, et al. Effective caring: A synthesis of the international evidence on carer needs and interventions. Wollongong, NSW, Australia: Centre for Health Service Development, University of Wollongong, 2007.
34. 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;15:1158-1169.
35. Docherty A, Owens A, Asadi-Lari M, et al. Knowledge and information needs of informal caregivers in palliative care: a qualitative systematic review. Palliat Med 2008;22:153-171. (Pubitemid 351597276)
36. Prigerson H, Maciejewski PK. Prolonged grief disorder PG-12. Boston, MA: Dana-Farber Cancer Institute, 2006.
37. Lazarus R, Folkman S. Stress, appraisal, and coping. New York: Springer Publishing Co., 1984.
38. Tabachnick BG, Fidell LS. Using multivariate statistics, 4th ed. Boston, MA: Allyn and Bacon, 2001.
39. Holtom N, Barraclough J. Is the Hospital Anxiety and Depression Scale (HADS) useful in assessing depression in palliative care? Palliat Med 2000;14:219-220.
40. Zigmond A, Snaith R. The Hospital Anxiety and Depression Scale. Acta Psychiatr Scand 1983;67:361-370. (Pubitemid 13098606)
41. Scheier MF, Carver CS. Effects of optimism on psychological and physical well-being: theoretical overview and empirical update. Cognit Ther Res 1992;16:201-228.
42. Given C, Given B, Stommel M, et al. The Caregiver Reaction Assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Res Nurs Health 1992;15:271-283.
43. Kinsella G, Cooper B, Picton C, Murtagh D. A review of the measurement of caregiver and family burden in palliative care. J Palliat Care 1998;14:37-45. (Pubitemid 128639874)
44. Hudson PL, Hayman-White K. Measuring the psychosocial characteristics of family caregivers of palliative care patients: psychometric properties of nine self-report instruments. J Pain Symptom Manage 2006;31:215-228.
45. Johnson JG, Vanderwerker LC, Bornstein RF, Zhang B, Prigerson HG. Development and validation of an instrument for the assessment of dependency among bereaved persons. J Psychopathol Behav Assess 2006;28:261-270.
46. Zimet GD, Dahlem NW, Zimet SG, Farley GK. The multidimensional scale of perceived social support. J Pers Assess 1988;52:30-41.
47. Moos RH, Moos BS. Family Environment Scale manual. Palo Alto, CA: Consulting Psychologist Press, 1981.
48. Scheier MF, Carver CS, Bridges MW. Distinguishing optimism from neuroticism (and trait anxiety, self-mastery, and self-esteem): a re-evaluation of the life orientation test. J Pers Soc Psychol 1994;67:1063-1078.
49. Archbold P, Stewart B, Greenlick M, Harvath T. Mutuality and preparedness as predictors of role strain. Res Nurs Health 1990;13:375-384.
50. Archbold P, Stewart B. Family caregiving inventory. Portland, OR: Oregon Health Sciences University, 1996.
51. Pearlin L, Mullan S, Semple S, Skuff M. Caregiving and the stress process: an overview of concepts and their measures. Gerontologist 1990;30:583-593.
52. Gough K, Hudson P. Psychometric properties of the Hospital Anxiety and Depression Scale in family caregivers of palliative care patients. J Pain Symptom Manage 2009;37:797-806.
53. Kissane DW, Clarke DM, Street AF. Demoralization syndrome - a relevant psychiatric diagnosis for palliative care. J Palliat Care 2001;17:12-21. (Pubitemid 33710831)