Bereaved cancer carers' experience of and preference for palliative care. 2010

Natasha Sekelja, and Phyllis N Butow, and Martin H N Tattersall
Centre for Medical Psychology and Evidence-based Medicine (CeMPED), University of Sydney, Sydney, Australia. nsekelja@yahoo.com.au

BACKGROUND The importance of addressing carers' needs is becoming increasingly recognised. Cancer patients' carers are identified as a vulnerable population with many unmet informational, emotional and practical needs, particularly during the palliative and end-of-life phases of care. During these phase of illness, patients and carers face the imminence of death and require additional support such as that provided by palliative care services. There is little research on carers' views regarding optimal timing of palliative care referral and the utility of palliative care services. This study aimed to explore bereaved carers' experience and understanding of palliative care and their views on optimal timing of first contact. METHODS Thirty bereaved carers of patients with metastatic cancer who had previously participated in a randomised controlled trial of early referral versus standard access to palliative care services were interviewed via phone. The interviews were semi-structured, audio-taped and transcribed. Sampling ceased when information became redundant. Interpretive Phenomenological Analysis methodology was used for data analysis. RESULTS Five major themes were identified: meaning of palliative care, timing of palliative care, valued aspects of palliative care, preparation for the patient's death and the role of palliative care in preparing for and after the patient's death. The results show that bereaved carers of cancer patients define the meaning of palliative care in terms of its function and associate it by and large with end of life. Carers were grateful for the support received from palliative care, but acknowledged its limits. Carers most appreciated the practical help and the respect that the palliative care team showed. They generally recommended that palliative care be introduced when patients need help at home or when symptoms become difficult to control rather than as soon as patients are told that the cancer is incurable. CONCLUSIONS This study has provided information on the meaning of palliative care to carers who have had the experience of caring for a patient who died. Carers were uncertain about the role of palliative care and associated it with end-of-life care. Education could help de-stigmatise palliative care and reduce misgivings regarding its introduction.

UI MeSH Term Description Entries
D007407 Interviews as Topic Works about conversations with an individual or individuals held in order to obtain information about their background and other personal biographical data, their attitudes and opinions, etc. It includes works about school admission or job interviews. Group Interviews,Interviewers,Interviews, Telephone,Oral History as Topic,Group Interview,Interview, Group,Interview, Telephone,Interviewer,Interviews, Group,Telephone Interview,Telephone Interviews
D008297 Male Males
D008875 Middle Aged An adult aged 45 - 64 years. Middle Age
D010166 Palliative Care Care alleviating symptoms without curing the underlying disease. (Stedman, 25th ed) Palliative Treatment,Palliative Supportive Care,Palliative Surgery,Palliative Therapy,Surgery, Palliative,Therapy, Palliative,Care, Palliative,Palliative Treatments,Supportive Care, Palliative,Treatment, Palliative,Treatments, Palliative
D005260 Female Females
D006301 Health Services Needs and Demand Health services required by a population or community as well as the health services that the population or community is able and willing to pay for. Health Services Needs,Needs,Needs and Demand, Health Services,Target Population,Health Services Need,Need, Health Services,Needs, Health Services,Population, Target,Populations, Target,Target Populations
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D000368 Aged A person 65 years of age or older. For a person older than 79 years, AGED, 80 AND OVER is available. Elderly
D000369 Aged, 80 and over Persons 80 years of age and older. Oldest Old
D001601 Bereavement Refers to the whole process of grieving and mourning and is associated with a deep sense of loss and sadness. Bereavements

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