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Experiences of security and continuity of care: patients' and families' narratives about the work of specialized palliative home care teams
Sophiahemmet University.ORCID iD: 0000-0001-7935-3260
Sophiahemmet University.ORCID iD: 000-0003-3204-6583
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2016 (English)In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523Article in journal (Refereed) Epub ahead of print
Abstract [en]

BACKGROUND: Those who are seriously ill and facing death are often li ing 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.

Place, publisher, year, edition, pages
Cambridge: Cambridge University Press, 2016.
Keyword [en]
Patients, Family, Health care teams, Home care services, Palliative care
National Category
Nursing
Identifiers
URN: urn:nbn:se:shh:diva-2310DOI: 10.1017/S1478951516000547PubMedID: 27443410OAI: oai:DiVA.org:shh-2310DiVA: diva2:938072
Available from: 2016-06-16 Created: 2016-06-16 Last updated: 2017-01-23Bibliographically approved
In thesis
1. Specialized palliative home care teams: Complementary perspectives of team functions and influences on patients and families
Open this publication in new window or tab >>Specialized palliative home care teams: Complementary perspectives of team functions and influences on patients and families
2016 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Persons with life-threatening illness are increasingly being cared for and dying at home. Palliative care strives to cater to multiple dimensions such as physical, psychosocial and spiritual or existential, and meeting these needs in patients and families requires multiple competencies. Palliative care organizations propose organization and delivery of care in teamwork models; however, teamwork is complex and can be approached from various perspectives. Previous research has identified gaps in palliative care regarding which components of teamwork are most effective. The overall aim of this thesis was to explore perspectives of team function in specialized palliative care teams, among health care professionals, families and patients. Study I entailed translation and cultural adaptation of a research questionnaire. Study II entailed qualitative interviews with health care professionals (n=15) working in specialized palliative home care and Study III interviews with patients (n=6) and family members (n=7). In Study IV, an exploratory design was used. Initially team leaders (n=77) in palliative care reported team function. Next, health care professionals (n=61) reported team development in the group development questionnaire, patients (n=43) reported symptoms in the Edmonton Symptom Assessment System and family members (n=45) reported satisfaction with care in the translated and culturally adapted FAMCARE-2 questionnaire. Results of the studies are: (I) a translated culturally adapted and initially tested Swedish language version of the FAMCARE-2 scale, (II) health care professionals report that competence, communication and organization are crucial components of teamwork in specialized palliative homecare, (III) patients and families report that they experience security and continuity of care due to 24/7 care, sensitivity to changing needs and demonstrating caring, and (IV) specialized palliative home care teams have a core of registered nurses, physicians and social workers. Positive associations were found between team maturity and team effectiveness.

Place, publisher, year, edition, pages
Stockholm: Karolinska Institutet, 2016. 86 p.
Keyword
Palliative home care, Teamwork, Patient, Family, Health care professional
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-2312 (URN)978-91-7549-653-5 (ISBN)
Public defence
2016-06-21, Erforssalen, Sophiahemmet högskola, Valhallavägen 91, hus R, plan 2, Stockholm, 09:30
Opponent
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Available from: 2016-06-17 Created: 2016-06-16 Last updated: 2016-06-17Bibliographically approved

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