Malmö University Publications
Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Models of support to family members during the trajectory of cancer: A scoping review
Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV). Department of Pediatrics, Skåne University Hospital.ORCID iD: 0000-0001-8700-4490
Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).ORCID iD: 0000-0002-8684-2537
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: 0000-0002-8884-1490
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. Vol. 30, no 21-22, p. 3072-3098
Keywords [en]
cancer, cancer trajectory, family, family caregivers, implementation, intervention, nurse, psychosocial support, support model, supportive care
National Category
Nursing
Identifiers
URN: urn:nbn:se:mau:diva-42329DOI: 10.1111/jocn.15832ISI: 000648738600001PubMedID: 33973285Scopus ID: 2-s2.0-85105911113OAI: oai:DiVA.org:mau-42329DiVA, id: diva2:1557637
Available from: 2021-05-26 Created: 2021-05-26 Last updated: 2024-04-26Bibliographically 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

Open Access in DiVA

fulltext(1739 kB)307 downloads
File information
File name FULLTEXT01.pdfFile size 1739 kBChecksum SHA-512
c662307568ca7111f72effc030599273ae02351a5081bec53c8456bb9b5529ad04c3f706aa973bd52ae938f05bfcbc1309222e8e1c009b3b723d129362a12adf
Type fulltextMimetype application/pdf

Other links

Publisher's full textPubMedScopus

Authority records

Samuelsson, MariaWennick, AnneJakobsson, JennyBengtsson, Mariette

Search in DiVA

By author/editor
Samuelsson, MariaWennick, AnneJakobsson, JennyBengtsson, Mariette
By organisation
Department of Care Science (VV)
In the same journal
Journal of Clinical Nursing
Nursing

Search outside of DiVA

GoogleGoogle Scholar
Total: 309 downloads
The number of downloads is the sum of all downloads of full texts. It may include eg previous versions that are now no longer available

doi
pubmed
urn-nbn

Altmetric score

doi
pubmed
urn-nbn
Total: 158 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf