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  • 1.
    Samuelsson, Maria
    et al.
    Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV). Skane Univ Hosp, Dept Pediat, Malmö, Sweden..
    Wennick, Anne
    Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).
    Bengtsson, Mariette
    Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).
    Lydrup, Marie-Louise
    Skane Univ Hosp, Dept Surg & Gastroenterol, Malmö, Sweden..
    Jakobsson, Jenny
    Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV). Skane Univ Hosp, Dept Surg & Gastroenterol, Malmö, Sweden..
    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 cancer2023In: Journal of patient-reported outcomes, E-ISSN 2509-8020, Vol. 7, no 1, article id 100Article in journal (Refereed)
    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.

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  • 2.
    Samuelsson, Maria
    et al.
    Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).
    Jakobsson, Jenny
    Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).
    Wennick, Anne
    Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).
    Lydrup, Marie-Louise
    Skåne University Hospital, Department of Surgery, Malmö, Sweden.
    Bengtsson, Mariette
    Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).
    Cancer specialist nurses' experiences of supporting family members of persons diagnosed with colorectal cancer: A qualitative study2022In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 61, p. 102205-102205, article id 102205Article in journal (Refereed)
    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.

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  • 3.
    Samuelsson, Maria
    et al.
    Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV). Department of Pediatrics, Skåne University Hospital.
    Wennick, Anne
    Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).
    Jakobsson, Jenny
    Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).
    Bengtsson, Mariette
    Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).
    Models of support to family members during the trajectory of cancer: A scoping review2021In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 30, no 21-22, p. 3072-3098Article in journal (Refereed)
    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.

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  • 4.
    Samuelsson, Maria
    et al.
    Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).
    Wennick, Anne
    Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).
    An exploratory study of the everyday life of Swedish children on home parenteral nutrition and their families.2020In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 52, p. e84-e89, article id S0882-5963(19)30586-XArticle in journal (Refereed)
    Abstract [en]

    BACKGROUND: Improved survival rates of preterm infants and critically ill children has resulted in an increasing number of children growing up on HPN. However, how the child and the child's family experience HPN is sparsely studied.

    PURPOSE: Thus, this study aims to elucidate the everyday life experiences of children with intestinal failure on HPN from the perspective of the child and the child's family.

    DESIGN AND METHODS: We used a qualitative inductive study that included semi-structured interviews from 13 family members in six families, and we analyzed them using content analysis.

    RESULTS: The family members' experiences had an overall theme, having to take on a full-time (nursing) responsibility, and fell into three categories: family restrictions, family adjustments, and family uncertainty.

    CONCLUSION: Families on HPN had to shoulder an in-home round-the-clock (nursing) responsibility that came with a daily logistical challenge. The complexity of HPN complicates the possibility of external support, so the families choose to keep the burden within the family; consequently single-parent households have limited possibilities for relief and recovery.

    PRACTICE IMPLICATIONS: To minimize the intrusion of the treatment in family's everyday life and, thereby, support the families, health care professionals might find it beneficial to obtain an inventory of the everyday life needs of each specific family when first introducing HPN. Further, by encouraging close kin to participate in the HPN education these families may be unburdened some more. In addition, it is essential that professionals follow the families protocol for management and not the other way around.

  • 5.
    Samuelsson, Maria
    et al.
    Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).
    Wennick, Anne
    Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).
    Jakobsson, Jenny
    Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).
    Bengtsson, Mariette
    Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).
    Models of support to family members during the trajectory of cancer: a scoping review protocol.2020In: BMJ Open, E-ISSN 2044-6055, Vol. 10, no 9, article id e037633Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION: A cancer diagnose, for example, colorectal cancer, not only affects the cancer-person stricken, but also the surrounding family. Thus, this scoping review intends to identify appropriate models of support that will guide the development of a model of support to family members during the trajectory of colorectal cancer.

    METHODS AND ANALYSIS: , and described by the Joanna Briggs Institute. All the stages will be conducted iteratively and reflexively. First, a search strategy will be developed with a librarian and applied in the following peer-reviewed databases: PubMed, Cumulative Index to Nursing and Allied Health Literature and PsycINFO. Additional searches will be performed in Google Scholar and SwePub for identification of grey literature and hand searched in the reference lists. Searches will be conducted from December 2019 to February 2020. A draft of the preliminary search strategy was performed in PubMed in November 2019. Subsequently, three members of the research team will independently screen all abstracts for relevance, as well as the full-text articles. Studies meeting the inclusion criteria will be critically evaluated using the Joanna Brigg Institute Critical Appraisal Tools. A descriptive summary of study characteristics and of the scoping review process will be presented, including a visual flow diagram. Lastly, a thematic analysis as presented by Braun and Clarke will be conducted. To enhance validity, contact nurses of persons with colorectal cancer will be provided an overview of the preliminary results.

    ETHICS AND DISSEMINATION: Being a secondary analysis, ethical approval is not needed for this study. The findings of the analysis will be used to inform the design of a future study aiming to develop a model of support and an upcoming scoping review, which will be published in a scientific journal and presented at relevant conferences.

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