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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
Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV). Skane 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).ORCID iD: 0000-0002-8684-2537
Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).ORCID iD: 0000-0002-8884-1490
Skane Univ Hosp, Dept Surg & Gastroenterol, Malmö, Sweden..
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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. Vol. 7, no 1, article id 100
Keywords [en]
Colorectal cancer, Caregivers, Cognitive interviews, Family members, Psychometrics, Supportive care needs, Translation, Unmet needs, Validity, Questionnaire
National Category
Nursing
Identifiers
URN: urn:nbn:se:mau:diva-63502DOI: 10.1186/s41687-023-00636-1ISI: 001081024300001PubMedID: 37819416Scopus ID: 2-s2.0-85173669481OAI: oai:DiVA.org:mau-63502DiVA, id: diva2:1810228
Available from: 2023-11-07 Created: 2023-11-07 Last updated: 2024-06-11Bibliographically 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.

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, MariaWennick, AnneBengtsson, MarietteJakobsson, Jenny

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