Malmö University Publications
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Support for family members in routine outpatient colorectal cancer care: Development of a tailored support model
Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).ORCID iD: 0000-0001-8700-4490
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
National Category
Nursing
Identifiers
URN: urn:nbn:se:mau:diva-66958DOI: 10.24834/isbn.9789178774944ISBN: 978-91-7877-413-5 (print)ISBN: 978-91-7877-494-4 (electronic)OAI: oai:DiVA.org:mau-66958DiVA, id: diva2:1854716
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: 2024-05-17Bibliographically approved
List of papers
1. Models of support to family members during the trajectory of cancer: A scoping review
Open this publication in new window or tab >>Models of support to family members during the trajectory of cancer: A scoping review
2021 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 30, no 21-22, p. 3072-3098Article in journal (Refereed) Published
Abstract [en]

Aims and objectives To map the existing literature on support models provided to family members during the cancer trajectory. Background Cancer diagnosis, treatment and survivorship have a profound influence on the surrounding family members. This scoping review is part of the development of a support model for family members of persons diagnosed with colorectal cancer. Design The method was guided by the Arksey and O'Malley framework, described in the Joanna Briggs Institute guidelines, and the reporting is compliant with PRISMA-ScR Checklist. Searches were conducted in PubMed, CINAHL and PsycINFO from November 2019-February 2020 with no limitation in publication year or study design. Complementing searches were conducted in reference lists and for grey literature, followed by an additional search in September 2020. Inclusion criteria were primary research about support provided by health care, to family members, during cancer, of an adult person, in Swedish or English, of moderate or high methodological quality. Quality was assessed using the Joanna Briggs Institute critical appraisal tools. Data were extracted using a charting form. Result A total of 32 studies were included in the review describing 39 support models. Conclusion The mapping of the existing literature resulted in the identification of three themes of support models: psychoeducation, caregiver training and psychological support. In addition, that future research should target a specific diagnosis and trajectory phase as well as include family members and intervention providers in model development. Relevance for clinical practice Knowledge from the literature on both the needs of the family members and existing support models should be incorporated with the prerequisites of clinical practice. Clinical practice should also be complemented with structured assessments of family members' needs conducted regularly.

Place, publisher, year, edition, pages
John Wiley & Sons, 2021
Keywords
cancer, cancer trajectory, family, family caregivers, implementation, intervention, nurse, psychosocial support, support model, supportive care
National Category
Nursing
Identifiers
urn:nbn:se:mau:diva-42329 (URN)10.1111/jocn.15832 (DOI)000648738600001 ()33973285 (PubMedID)2-s2.0-85105911113 (Scopus ID)
Available from: 2021-05-26 Created: 2021-05-26 Last updated: 2024-04-26Bibliographically approved
2. Cancer specialist nurses' experiences of supporting family members of persons diagnosed with colorectal cancer: A qualitative study
Open this publication in new window or tab >>Cancer specialist nurses' experiences of supporting family members of persons diagnosed with colorectal cancer: A qualitative study
Show others...
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
Keywords
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:nbn:se:mau:diva-55360 (URN)10.1016/j.ejon.2022.102205 (DOI)000871085600010 ()36240683 (PubMedID)2-s2.0-85139735971 (Scopus ID)
Available from: 2022-10-12 Created: 2022-10-12 Last updated: 2024-04-26Bibliographically approved
3. Family members’ conceptions of their supportive care needs across the colorectal cancer trajectory
Open this publication in new window or tab >>Family members’ conceptions of their supportive care needs across the colorectal cancer trajectory
Show others...
(English)Manuscript (preprint) (Other academic)
National Category
Nursing
Identifiers
urn:nbn:se:mau:diva-66957 (URN)
Available from: 2024-04-26 Created: 2024-04-26 Last updated: 2024-04-26Bibliographically approved
4. Translation, cultural adaptation, and psychometric testing of the supportive care needs survey for partners and caregivers for swedish family members of persons diagnosed with colorectal cancer
Open this publication in new window or tab >>Translation, cultural adaptation, and psychometric testing of the supportive care needs survey for partners and caregivers for swedish family members of persons diagnosed with colorectal cancer
Show others...
2023 (English)In: Journal of patient-reported outcomes, E-ISSN 2509-8020, Vol. 7, no 1, article id 100Article in journal (Refereed) Published
Abstract [en]

Background: Colorectal cancer is the third most common cancer diagnosis globally and is increasing in both incidence and prevalence. Despite evidence showing that family members of persons diagnosed with cancer have supportive care needs, no validated questionnaire measuring the needs of family members of persons diagnosed with CRC exists in Swedish. Thus, the objective of the present study was to translate, culturally adapt, and evaluate the psychometric properties the Supportive Care Needs Survey - Partners and Caregivers 45.

Methods: The translation and cultural adaptation followed a systematic yet iterative process. Firstly, the questionnaire was translated using a forward-backward approach. Secondly, face and content validity and comprehensibility were evaluated by two expert panels of colorectal cancer specialist nurses and family members, respectively. Lastly, the psychometric properties, validity, and reliability of the translated questionnaire were evaluated among 45 Swedish family members of persons diagnosed with colorectal cancer.

Results: The face, content, and construct validity of the translated questionnaire were evaluated as satisfying. Moreover, psychometric evaluations showed high data quality and satisfactory internal consistency. However, the results also revealed unsolved issues regarding relevance, targeting, and internal consistency, as well as a probable scaling failure.

Conclusion: The translated and adapted questionnaire can be used to identify family members unmet needs of support throughout the colorectal cancer trajectory. The questionnaire showed promising validity and reliability in the target population. However, it needs to be further evaluated in a larger sample, preferably involving factor analysis and stability over time.

Plain language summary: Colorectal cancer is the third most common cancer diagnose globally. At times of cancer, also the health and wellbeing of the surrounding family members is negatively affected. As a result, family members of persons diagnosed with cancer report that they too need support. Still, no validated questionnaire that enable measurement of family members needs of support throughout the colorectal cancer trajectory existed in Swedish. Thus, the present study undertook the process of translation of a questionnaire from English to Swedish. Thereto, evaluated it among Swedish family members of persons diagnosed with colorectal cancer. The evaluation showed a successful translation and the translated questionnaire appeared reliable and useful for measuring the family members´ needs of support throughout the colorectal cancer trajectory. However, it requires further evaluation.

Place, publisher, year, edition, pages
Springer Nature, 2023
Keywords
Colorectal cancer, Caregivers, Cognitive interviews, Family members, Psychometrics, Supportive care needs, Translation, Unmet needs, Validity, Questionnaire
National Category
Nursing
Identifiers
urn:nbn:se:mau:diva-63502 (URN)10.1186/s41687-023-00636-1 (DOI)001081024300001 ()37819416 (PubMedID)2-s2.0-85173669481 (Scopus ID)
Available from: 2023-11-07 Created: 2023-11-07 Last updated: 2024-04-26Bibliographically approved

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