Hostname: page-component-78c5997874-xbtfd Total loading time: 0 Render date: 2024-11-10T12:13:27.016Z Has data issue: false hasContentIssue false
  • English
  • Français

Experiences of security and continuity of care: Patients' and families' narratives about the work of specialized palliative home care teams

Published online by Cambridge University Press:  22 July 2016

Anna Klarare Open the ORCID record for Anna Klarare [Opens in a new window] ,
Birgit H Rasmussen ,
Bjöörn Fossum ,
Carl Johan Fürst ,
Johan Hansson  and
Carina Lundh Hagelin
Anna Klarare*
Affiliation:
Department of Learning, Informatics, Management, and Ethics, Karolinska Institutet, Stockholm, Sweden Medical Management Center, Sophiahemmet University, Stockholm, Sweden
Birgit H Rasmussen
Affiliation:
Department of Health Care Sciences, Lund University, Lund, Scania, Sweden
Bjöörn Fossum
Affiliation:
Medical Management Center, Sophiahemmet University, Stockholm, Sweden Department of Clinical Science and Education, Karolinska Institutet, Stockholm, Sweden
Carl Johan Fürst
Affiliation:
Institute for Palliative Care, Region Skåne and Lund University, Lund, Sweden Department of Oncology–Pathology, Karolinska Institutet, Stockholm, Sweden
Johan Hansson
Affiliation:
Department of Learning, Informatics, Management, and Ethics, Karolinska Institutet, Stockholm, Sweden
Carina Lundh Hagelin
Affiliation:
Sophiahemmet University, Stockholm, Sweden Development Unit in Palliative Care, Stockholms Sjukhem Foundation, Stockholm, Sweden Department for Neurobiology Care Science and Society, Karolinska Institutet, Stockholm, Sweden
*
Address correspondence and reprint requests to: Anna Klarare, Sophiahemmet University, Box 5605, 114 86 Stockholm, Sweden. E-mail: anna.klarare@ki.se
Get access Rights & Permissions [Opens in a new window]

Abstract

Background:

Those who are seriously ill and facing death are often living with physical, emotional, social, and spiritual suffering. Teamwork is considered to be necessary to holistically meet the diverse needs of patients in palliative care. Reviews of studies regarding palliative care team outcomes have concluded that teams provide benefits, especially regarding pain and symptom management. Much of the research concerning palliative care teams has been performed from the perspective of the service providers and has less often focused on patients' and families' experiences of care.

Objective:

Our aim was to investigate how the team's work is manifested in care episodes narrated by patients and families in specialized palliative home care (SPHC).

Method:

A total of 13 interviews were conducted with patients and families receiving specialized home care. Six patients and seven family members were recruited through SPHC team leaders. Interviews were transcribed verbatim and the transcripts qualitatively analyzed into themes.

Results:

Two themes were constructed through thematic analysis: (1) security (“They are always available,” “I get the help I need quickly”); and (2) continuity of care (“They know me/us, our whole situation and they really care”). Of the 74 care episodes, 50 were descriptions of regularly scheduled visits, while 24 related to acute care visits and/or interventions.

Significance of results:

Patients' and family members' descriptions of the work of SPHC teams are conceptualized through experiences of security and continuity of care. Experiences of security are fostered through the 24/7 availability of the team, sensitivity and flexibility in meeting patients' and families' needs, and practical adjustments to enable care at home. Experiences of continuity of care are fostered through the team's collective approach, where the individual team member knows the patients and family members, including their whole situation, and cares about the little things in life as well as caring for the family unit.

Keywords

PatientsFamilyHealthcare teamsHome care servicesPalliative care
Type
Original Articles
Information
Palliative & Supportive Care , Volume 15 , Issue 2 , April 2017 , pp. 181 - 189
Copyright
Copyright © Cambridge University Press 2016 

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

Appelin, G. & Bertero, C. (2004). Patients' experiences of palliative care in the home: A phenomenological study of a Swedish sample. Cancer Nursing, 27(1), 65–70.CrossRefGoogle Scholar
Baker, D.P., Day, R. & Salas, E. (2006). Teamwork as an essential component of high-reliability organizations. Health Services Research, 41(4, Pt 2), 1576–1598.CrossRefGoogle ScholarPubMed
Bosch, M., Faber, M.J., Cruijsberg, J., et al. (2009). Review article: Effectiveness of patient care teams and the role of clinical expertise and coordination. A literature review. Medical Care Research and Review, 66(Suppl. 6), 5S–35S.CrossRefGoogle ScholarPubMed
Bostrom, B., Sandh, M., Lundberg, D., et al. (2004). Cancer patients' experiences of care related to pain management before and after palliative care referral. European Journal of Cancer Care, 13(3), 238–245.CrossRefGoogle ScholarPubMed
Cassel, E.J. (1982). The nature of suffering and the goals of medicine. The New England Journal of Medicine, 306(11), 639–645.CrossRefGoogle ScholarPubMed
Clark, D. (1999). “Total pain,” disciplinary power and the body in the work of Cicely Saunders, 1958–1967. Social Science & Medicine, 49(6), 727–736.CrossRefGoogle Scholar
D'Angelo, D., Mastroianni, C., Hammer, J.M., et al. (2015). Continuity of care during end of life: An evolutionary concept analysis. International Journal of Nursing Knowledge, 26(2), 80–89.CrossRefGoogle ScholarPubMed
Flanagan, J.C. (1954). The critical incident technique. Psychological Bulletin, 51(4), 327–358.CrossRefGoogle ScholarPubMed
Gamondi, C., Larkin, P. & Payne, S. (2013). Core competencies in palliative care: An EAPC white paper on palliative care education. Part 1. European Journal of Palliative Care, 20(2), 86–91.Google Scholar
Goldschmidt, D., Schmidt, L., Krasnik, A., et al. (2006). Expectations to and evaluation of a palliative home-care team as seen by patients and carers. Supportive Care in Cancer, 14(12), 1232–1240.CrossRefGoogle ScholarPubMed
Goldsmith, J., Wittenberg-Lyles, E., Rodriguez, D., et al. (2010). Interdisciplinary geriatric and palliative care team narratives: Collaboration practices and barriers. Qualitative Health Research, 20(1), 93–104.CrossRefGoogle ScholarPubMed
Gomes, B., Calanzani, N., Curiale, V., et al. (2013 a). Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. The Cochrane Database of Systematic Reviews, 6, CD007760.Google Scholar
Gomes, B., Calanzani, N., Gysels, M., et al. (2013 b). Heterogeneity and changes in preferences for dying at home: A systematic review. BMC Palliative Care, 12, 7.CrossRefGoogle ScholarPubMed
Higginson, I.J. & Evans, C.J. (2010). What is the evidence that palliative care teams improve outcomes for cancer patients and their families? Cancer Journal, 16(5), 423–435.CrossRefGoogle ScholarPubMed
Hunstad, I. & Foelsvik Svindseth, M. (2011). Challenges in home-based palliative care in Norway: A qualitative study of spouses' experiences. International Journal of Palliative Nursing, 17(8), 398–404.Google ScholarPubMed
Johnston, B.M., Milligan, S., Foster, C., et al. (2012). Self-care and end of life care: Patients' and carers' experience a qualitative study utilising serial triangulated interviews. Supportive Care in Cancer, 20(8), 1619–1627.CrossRefGoogle ScholarPubMed
Jünger, S., Pestinger, M., Elsner, F., et al. (2007). Criteria for successful multiprofessional cooperation in palliative care teams. Palliative Medicine, 21(4), 347–354.CrossRefGoogle ScholarPubMed
Lemieux-Charles, L. & McGuire, W.L. (2006). What do we know about health care team effectiveness? A review of the literature. Medical Care Research and Review, 63(3), 263–300.CrossRefGoogle ScholarPubMed
Mehta, A., Chan, L.S. & Cohen, S.R. (2014). Flying blind: Sources of distress for family caregivers of palliative cancer patients managing pain at home. Journal of Psychosocial Oncology, 32(1), 94–111.CrossRefGoogle ScholarPubMed
Melin-Johansson, C., Axelsson, B., Gaston-Johansson, F., et al. (2010). Significant improvement in quality of life of patients with incurable cancer after designation to a palliative homecare team. European Journal of Cancer Care, 19(2), 243–250.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(8), 741–751.CrossRefGoogle Scholar
Milberg, A. & Strang, P. (2011). Protection against perceptions of powerlessness and helplessness during palliative care: The family members' perspective. Palliative & Supportive Care, 9(3), 251–262.CrossRefGoogle ScholarPubMed
Milberg, A., Wahlberg, R., Jakobsson, M., et al. (2012). What is a “secure base” when death is approaching? A study applying attachment theory to adult patients' and family members' experiences of palliative home care. Psycho-Oncology, 21(8), 886–895.CrossRefGoogle Scholar
Milberg, A., Friedrichsen, M., Jakobsson, M., et al. (2014). Patients' sense of security during palliative care: What are the influencing factors? Journal of Pain and Symptom Management, 48(1), 45–55.CrossRefGoogle ScholarPubMed
Noble, B., King, N., Woolmore, A., et al. (2015). Can comprehensive specialised end-of-life care be provided at home? Lessons from a study of an innovative consultant-led community service in the UK. European Journal of Cancer Care, 24(2), 253–266.CrossRefGoogle ScholarPubMed
Parker-Oliver, D., Bronstein, L.R. & Kurzejeski, L. (2005). Examining variables related to successful collaboration on the hospice team. Health & Social Work, 30(4), 279–286.CrossRefGoogle ScholarPubMed
Polit, D.F. & Beck, C.T. (2010). Generalization in quantitative and qualitative research: Myths and strategies. International Journal of Nursing Studies, 47(11), 1451–1458.CrossRefGoogle ScholarPubMed
Rasmussen, B.H. & Edvardsson, D. (2007). The influence of environment in palliative care: Supporting or hindering experiences of “at-homeness.” Contemporary Nurse, 27(1), 119–131.CrossRefGoogle ScholarPubMed
Rasmussen, B.H., Jansson, L. & Norberg, A. (2000). Striving for becoming at-home in the midst of dying. The American Journal of Hospice & Palliative Care, 17(1), 31–43.CrossRefGoogle ScholarPubMed
Riessman, C.K. (2008). Narrative methods for human sciences. Thousand Oaks, CA: Sage.Google Scholar
Riolfi, M., Buja, A., Zanardo, C., et al. (2014). Effectiveness of palliative home-care services in reducing hospital admissions and determinants of hospitalization for terminally ill patients followed up by a palliative home-care team: A retrospective cohort study. Palliative Medicine, 28(5), 403–411.CrossRefGoogle ScholarPubMed
Salas, E. & Frush, K. (2013). Improving patient safety through teamwork and team training. New York: Oxford University Press.Google Scholar
Saltman, D.C., O'Dea, N.A., Farmer, J., et al. (2007). Groups or teams in health care: Finding the best fit. Journal of Evaluation in Clinical Practice, 13(1), 55–60.CrossRefGoogle ScholarPubMed
Sandelowski, M. & Leeman, J. (2012). Writing usable qualitative health research findings. Qualitative Health Research, 22(10), 1404–1413.CrossRefGoogle ScholarPubMed
Tishelman, C. (1994). Cancer patients' hopes and expectations of nursing practice in Stockholm: Patients' descriptions and nursing discourse. Scandinavian Journal of Caring Sciences, 8(4), 213–222.CrossRefGoogle ScholarPubMed
Xyrichis, A. & Ream, E. (2008). Teamwork: A concept analysis. Journal of Advanced Nursing, 61(2), 232–241.CrossRefGoogle ScholarPubMed
Zimmermann, C., Riechelmann, R., Krzyzanowska, M., et al. (2008). Effectiveness of specialized palliative care: A systematic review. The Journal of the American Medical Association, 299(14), 1698–1709.CrossRefGoogle ScholarPubMed