Hostname: page-component-76fb5796d-45l2p Total loading time: 0 Render date: 2024-04-26T11:40:46.652Z Has data issue: false hasContentIssue false

A separate structured conversation with relatives of patients enrolled for advanced palliative home care: A care development project

Published online by Cambridge University Press:  10 May 2013

Maria E. Carlsson*
Affiliation:
Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden
*
Address correspondence and reprint requests to: Maria E. Carlsson, Department of Public Health and Caring Sciences, Uppsala University, P.O. Box 564, SE-751 22 Uppsala, Sweden. E-mail: maria.carlsson@pubcare.uu.se

Abstract

Objective:

One prerequisite for palliative home care is the relatives' participation in the care. The relatives' situation in palliative home care is unique, as they support the sick person and also have a great need for support themselves. The aim of this care development project was to develop and implement separate structured conversations (SSC) with relatives of patients of an advanced palliative home care team (APHCT).

Method:

During the project, 61 conversations were held and 55 relatives answered a questionnaire. The questionnaire, eight semistructured interviews with relatives, and three focus-group discussions with nurses constitute the material for the evaluation.

Results:

Relatives have difficulties separating the SSC from the APHCT's care as a whole. They underline that the SSC was a part of an ongoing process. They also emphasize the value of having a conversation of their own in which the patient was absent, and in which the focus was on the relative's situation. For some, the conversation took place at the APHCT premises. The advantages of that were more privacy and the opportunity to walk around the inpatient palliative care units. The main problem during the project was conducting the SSC soon after the patient was enrolled with the APHCT.

Significance of results:

Routinely offering one separate structured conversation with relatives with the intention of answering questions, talking about their willingness to provide care in the home, and mapping out their situation and social network, is a way to support both the relatives and the patients. The common structure of the conversations facilitated the assessment of the relatives' situation but did not hinder individualization according to the relatives' needs. The assumption is that all relatives should be offered a conversation.

Type
Original Articles
Copyright
Copyright © Cambridge University Press 2013 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Andershed, B. (2006). 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, 15, 11581169.Google Scholar
Axelsson, B. & Sjödén, P-O. (1998). Quality of life of cancer patients and their spouses in palliative home care. Palliative Medicine, 12, 2939.Google Scholar
Baider, L., Uwe, K., Isacson, R., et al. (1998). Prospective study of cancer patients and their spouses: the weakness of marital strength. Psycho-oncology, 7, 4956.Google Scholar
Eriksson, E., Arve, S. & Lauri, S. (2006). Informal and emotional support received by relatives before and after the cancer patient's death. European Journal of Oncology Nursing, 10, 4858.CrossRefGoogle ScholarPubMed
Friedrichsen, M. (2003). Justification for information and knowledge: Perceptions of family members in palliative home care in Sweden. Palliative & Supportive Care, 1, 239245.Google Scholar
Funk, L., Allan, D. & Stadjuhar, K. (2009). Palliative family caregivers' accounts of health care experiences: The importance of “security.” Palliative & Supportive Care, 7, 435447.CrossRefGoogle ScholarPubMed
Harding, R. & Higginson, I. (2003). What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliative Medicine, 17, 6374.CrossRefGoogle ScholarPubMed
Harding, R. & Higginson, I. (2001). Working with ambivalence: informal caregivers of patients at the end of life. Supportive Care in Cancer, 9, 642645.Google Scholar
Harrison, J., Haddad, P. & Maquire, P. (1995). The impact of cancer on key caregivers: a comparison of relative and patient concerns. European Journal of Cancer, 31A, 17361740.Google Scholar
Hauksdóttir, A., Steineck, G., Fürst, C.J., et al. (2010a). Long-term harm of low preparedness for a wife's death from cancer—A population-based study of widowers 4–5 years after the loss. American Journal of Epidemiology, 172, 389396.Google Scholar
Hauksdóttir, A., Valdimarsdóttir, U., Fürst, C.J., et al. (2010b). Health care-related predictors of husbands' preparedness for the death of a wife to cancer—A population-based follow-up. Annals of Oncology, 21, 354361.Google Scholar
Hudson, P., Thomas, T., Quinn, K., et al. (2009). Family meetings in palliative care: Are they effective? Palliative Medicine, 23, 150157.Google Scholar
Kristjanson, L. & White, K. (2002). Clinical support for families in the palliative care phase of hematologic or oncologic illness. Hematology/Oncology Clinics of North America, 16, 745762.CrossRefGoogle ScholarPubMed
Malterud, K. (1998). Kvalitativa metoder i medicinsk forskning (Qualitative methods in medical science). Lund: Studentlitteratur.Google Scholar
McPherson, C., Wilson, K. & Murray, M.A. (2007). Feeling like a burden: Exploring the perspectives of patients at the end of life. Social Sciences and Medicine, 64, 417427.Google Scholar
Medalie, J. (1997). The patient and family adjustment to chronic disease in the home. Disability and Rehabilitation, 19, 163170.CrossRefGoogle ScholarPubMed
Milberg, A. & Strang, P. (2007). What to do when ‘there is nothing more to do’? A study within a salutogenic framework of family members' experience of palliative home care staff. Psycho-oncology, 16, 741751.Google Scholar
Northouse, L., Templin, T., Mood, D., et al. (1998). Couples' adjustment to breast cancer and benign breast disease: A longitudinal analysis. Psycho-oncology, 7, 3748.Google Scholar
Öhlen, J., Andershed, B., Berg, C., et al. (2007). Relatives in end of life care-part 2: A theory for enabling safety. Journal of Clinical Nursing, 16, 382390.CrossRefGoogle ScholarPubMed
Patton, M. (1990). Qualitative Evaluation Methods. London: Sage Publications.Google Scholar
Rollison, B. & Carlsson, M. (2002). Evaluation of advanced home care (AHC). The next-of-kin's experiences. European Journal of Oncology Nursing, 6, 100106.Google Scholar
Scott, G. (2001). A study of family carers of people with a life-threatening illness 2: implication of the needs assessment. International Journal of Palliative Nursing, 7, 323330.Google Scholar
Svensk Sjuksköterskeförening S.S.F. (2009). Kvalitetsindikatorer inom omvårdnad. Gothia Förlag. (The Swedish society of Nursing. Quality indicators in Nursing. Stockholm.)Google Scholar
Valdimarsdottir, U., Helgason, A., Fürst, C.J., et al. (2004). Awareness of husband's impending death from cancer and long-term anxiety in widowhood: A nationwide follow-up. Palliative Medicine, 18, 432443.Google Scholar
Witkowski, Å. & Carlsson, M. (2004). Support group programme for relatives of terminally ill cancer patients. Supportive Care in Cancer, 12, 168175.Google Scholar