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Family members' conceptions of their supportive care needs across the colorectal cancer trajectory - A phenomenographic study
Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV). Skåne Univ Hosp, Dept Pediat, Malmö, Sweden.ORCID iD: 0000-0001-8700-4490
Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV). Skåne Univ Hosp, Dept Surg & Gastroenterol, Malmö, Sweden.ORCID iD: 0000-0002-1735-9437
Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).ORCID iD: 0000-0002-8884-1490
Skåne Univ Hosp, Dept Surg & Gastroenterol, Malmö, Sweden.
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2025 (English)In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 81, no 2, p. 1069-1081Article in journal (Refereed) Published
Abstract [en]

AimTo describe the variations of family members' conceptions of their supportive care needs (SCN) across the colorectal cancer (CRC) trajectory.DesignA descriptive qualitative study with a phenomenographic approach.MethodIndividual semi-structured interviews were conducted from May 2022 to October 2022 with 23 family members of persons diagnosed with colorectal cancer. The interviews were analysed using phenomenographic analysis following the Consolidated criteria for reporting qualitative research (COREQ) checklist.ResultsThe phenomenographic analysis resulted in five categories. Not of importance describes family members' needs as unimportant due to the good prognosis and the organization of care and in relation to the needs of others. Only satisfiable by professionals describes information possessed by the healthcare professionals as key, as well as the need for professional counselling for the family members to process their emotions. Managed by themselves describes family members preferring to manage their SCN themselves by turning to the appropriate social support and/or by using coping skills. Understood retrospectively describes SCN as only understandable when things have calmed down and as requiring one's own experience to understand. Left unmet describes SCN as unnoticed by the healthcare professionals or not brought to light by the family members, or family members not knowing where to turn for support.ConclusionSupportive care should involve individualized information, proactive and repeated assessments of needs across the trajectory, as well as encouragement of family members to reflect on their needs and to accept support when needed.ImpactThere is a gap in the literature regarding family members' SCN across the CRC trajectory which this study addresses. Findings show five categories of family members' conceptions of their SCN. Those findings could serve as a basis for the development of clinical colorectal supportive care across the cancer trajectory.Implications for the Profession and/or Patient CareFindings show that to offer family members of persons diagnosed with colorectal cancer support only at the time of diagnosis is insufficient. Instead, the healthcare team is recommended to proactively and repeatedly try to identify those in need and the characteristics of their needs. In addition, it is important to offer individualized information and strive to encourage family members to reflect on their situation and to not suppress their own needs if emerging.Reporting MethodReporting adheres to the consolidated criteria for reporting qualitative research (COREQ) checklist.Patient or Public ContributionNo patient or public contribution.

Place, publisher, year, edition, pages
John Wiley & Sons, 2025. Vol. 81, no 2, p. 1069-1081
Keywords [en]
colorectal cancer, conceptions, family caregivers, family members, phenomenography, qualitative, supportive care needs
National Category
Nursing
Identifiers
URN: urn:nbn:se:mau:diva-69945DOI: 10.1111/jan.16308ISI: 001257199800001PubMedID: 38940487Scopus ID: 2-s2.0-85197459955OAI: oai:DiVA.org:mau-69945DiVA, id: diva2:1886313
Available from: 2024-07-31 Created: 2024-07-31 Last updated: 2025-02-06Bibliographically 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)
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Supervisors
Note

Paper III in dissertation as manuscript.

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

Available from: 2024-04-26 Created: 2024-04-26 Last updated: 2024-12-16Bibliographically approved

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Samuelsson, MariaJakobsson, JennyBengtsson, MarietteWennick, Anne

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