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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
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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 

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