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Cancer specialist nurses' experiences of supporting family members of persons diagnosed with colorectal cancer: A qualitative study
Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV). Skåne University Hospital, Department of Pediatrics, Malmö, Sweden.ORCID iD: 0000-0001-8700-4490
Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).ORCID iD: 0000-0002-1735-9437
Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).ORCID iD: 0000-0002-8684-2537
Skåne University Hospital, Department of Surgery, Malmö, Sweden.
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2022 (English)In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 61, p. 102205-102205, article id 102205Article in journal (Refereed) Published
Abstract [en]

Purpose: The purpose of the present study was to explore cancer specialist nurses' experiences of supporting family members of persons diagnosed with colorectal cancer.

Method: The study was designed as a qualitative study. Data was collected using individual semi-structured telephone interviews with 21 cancer specialist nurses. The interviews were transcribed and analysed with reflexive thematic analysis.

Results: The analysis generated one overarching theme, In the shadow of the person diagnosed with colorectal cancer, and four themes: striving for confidence, searching for ways to support, seeking individualization, and balancing between needs. Swedish colorectal cancer care is organized with the persons diagnosed with colorectal cancer as the centre of care and lacks both structure and allocated resources for supportive care for family members. Thus, support for family members has to be provided within the existing colorectal cancer care. The support provided focuses mainly on strengthening the family members' ability in the caregiving role and is offered primarily at the time of diagnosis.

Conclusion: There is an apparent need for developing supportive care plans for family members, involving repeated assessments of multidimensional needs, a tailored support, and follow-ups. Accordingly, a re-evaluation of the cancer specialist nurse's role is needed so that key nursing responsibilities are not ranked second to administrative tasks.

Place, publisher, year, edition, pages
Elsevier, 2022. Vol. 61, p. 102205-102205, article id 102205
Keywords [en]
Cancer specialist nurse, Colorectal cancer, Family members, Needs assessment, Nursing, Oncology, Qualitative research, Supportive care, Thematic analysis
National Category
Nursing
Research subject
Care science
Identifiers
URN: urn:nbn:se:mau:diva-55360DOI: 10.1016/j.ejon.2022.102205ISI: 000871085600010PubMedID: 36240683Scopus ID: 2-s2.0-85139735971OAI: oai:DiVA.org:mau-55360DiVA, id: diva2:1703190
Available from: 2022-10-12 Created: 2022-10-12 Last updated: 2024-06-17Bibliographically approved
In thesis
1. Support for family members in routine outpatient colorectal cancer care: Development of a tailored support model
Open this publication in new window or tab >>Support for family members in routine outpatient colorectal cancer care: Development of a tailored support model
2024 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [sv]

The aim of this thesis was to identify how to offer support, tailored to supportivecare needs, for family members in routine outpatient colorectal cancer care. Toachieve this, four studies were undertaken. First, support models for familymembers of persons diagnosed with cancer were mapped in a scoping review.Second, colorectal cancer specialist nurses were interviewed about theirexperiences of supporting family members of persons diagnosed with colorectalcancer. In the third study, family members were interviewed about theirconceptions of their supportive care needs across the colorectal cancer trajectory.In the fourth study, a questionnaire allowing for measurement of unmetsupportive care needs was translated into Swedish and its psychometric propertieswere evaluated in a sample of Swedish family members of persons diagnosedwith colorectal cancer.

Findings indicate that existing support models that comprehensively addressfamily members’ supportive care needs are difficult to apply in routine cancercare. In routine colorectal cancer care, support for family members is evident yetunstructured, unequal, universal, and primarily offered at the time of diagnosis.At this phase, family members conceive their needs to be unimportant. Instead,supportive care needs unfold during treatment or survival. However, familymembers suppress their supportive care needs so as not to burden others.Concurrently, cancer specialist nurses avoid penetrating needs due to lack oftools, resources, and knowledge. Thus, unmet supportive care needs may end upunrecognized. Evaluations of the translated and culturally adapted questionnaireshowed promising validity and reliability for measuring unmet needs of supportin a sample of the population under study. Yet, this needs further examination ina larger sample.

Findings indicate a need to address discrepancies between support and supportivecare needs, to find tools for uncovering unmet needs and to target thephenomenon that family members suppress their needs. The complexity ofsupporting family members in routine colorectal cancer care needs to be disclosedand reflected upon so support can be operationalized in a way that is equal,applicable, and appropriate. This thesis suggests supporting family membersthrough preparing them for their cancer trajectory, by encouraging recognition ofand acting on emerging needs and by offering information about where to turn ifthat occurs. Building on these actions, persisting unmet needs post treatment canbe screened for and those in need can be offered a counselor. This may help tobridge the gap between psychologically distressed family members andemotional support for the purpose of preventing negative outcomes on health. 

Place, publisher, year, edition, pages
Malmö: Malmö University Press, 2024. p. 93
Series
Malmö University Health and Society Dissertations, ISSN 1653-5383, E-ISSN 2004-9277 ; 2024:5
National Category
Nursing
Identifiers
urn:nbn:se:mau:diva-66958 (URN)10.24834/isbn.9789178774944 (DOI)978-91-7877-413-5 (ISBN)978-91-7877-494-4 (ISBN)
Public defence
2024-04-12, Allmänna sjukhuset, HS aula AS:E002, Malmö, 09:00 (English)
Opponent
Supervisors
Note

Paper III in dissertation as manuscript.

Paper III is not included in the fulltext online.

Incorrect e-ISBN /DOI in print edition: 978-91-7877-414-2 (digital)

Available from: 2024-04-26 Created: 2024-04-26 Last updated: 2024-05-24Bibliographically approved

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Samuelsson, MariaJakobsson, JennyWennick, AnneBengtsson, Mariette

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