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Samuelsson, M., Jakobsson, J., Bengtsson, M., Lydrup, M.-L. & Wennick, A. (2025). Family members' conceptions of their supportive care needs across the colorectal cancer trajectory - A phenomenographic study. Journal of Advanced Nursing, 81(2), 1069-1081
Open this publication in new window or tab >>Family members' conceptions of their supportive care needs across the colorectal cancer trajectory - A phenomenographic study
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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
Keywords
colorectal cancer, conceptions, family caregivers, family members, phenomenography, qualitative, supportive care needs
National Category
Nursing
Identifiers
urn:nbn:se:mau:diva-69945 (URN)10.1111/jan.16308 (DOI)001257199800001 ()38940487 (PubMedID)2-s2.0-85197459955 (Scopus ID)
Available from: 2024-07-31 Created: 2024-07-31 Last updated: 2025-02-06Bibliographically approved
Samuelsson, M., Möllerberg, M.-L., Edman, K., Hansson, K., Enskär, K. & Wennick, A. (2024). Children's participation in the development, use and evaluation of support interventions for children of a parent diagnosed with cancer: a scoping review protocol. BMJ Open, 14(8), Article ID e084240.
Open this publication in new window or tab >>Children's participation in the development, use and evaluation of support interventions for children of a parent diagnosed with cancer: a scoping review protocol
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2024 (English)In: BMJ Open, E-ISSN 2044-6055, Vol. 14, no 8, article id e084240Article in journal (Refereed) Published
Abstract [en]

INTRODUCTION: At times of parental cancer, children's health and well-being are at risk, which is why interventions to support these children have been developed. When developing such interventions, engagement of the population under study in research is endorsed to enhance relevance of research questions and to enhance uptake and dissemination of the findings. Since no previous review has mapped the ways children participate in the development, use and evaluation of these support interventions, the focus of the upcoming scoping review is to identify gaps in the literature for guidance of future research.

METHODS AND ANALYSIS: The scoping review is guided by the methodological framework developed by Arksey and O'Malley. A preliminary search strategy was performed in PubMed in November 2020, refined in March 2021 and applied in PubMed, PsycINFO and CINAHL. Additional searches were performed in Google Scholar and SwePub, and reference lists were hand searched. Refined searches will be conducted in February 2024. The multidisciplinary research team will independently screen titles, abstracts and full-text articles for relevance. Then, relevant studies will be critically evaluated using the Joanna Briggs Critical Appraisal Skills Tools. Data will be extracted using an extraction form and analysed deductively. A descriptive summary of study characteristics and the research process will be presented, including a flow chart. The reporting of the study will be guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews Checklist.

ETHICS AND DISSEMINATION: Being a secondary analysis, ethical approval is not needed. Still, relevant studies will be reviewed for ethical approval as a criterion for inclusion. The findings will be used to inform future studies and will be published in a scientific journal as well as presented at conferences and organisations for children's rights.

Place, publisher, year, edition, pages
BMJ Publishing Group Ltd, 2024
Keywords
Child, Family, ONCOLOGY, Psychosocial Intervention, Review
National Category
Health Sciences
Identifiers
urn:nbn:se:mau:diva-71064 (URN)10.1136/bmjopen-2024-084240 (DOI)001311609200001 ()39209488 (PubMedID)2-s2.0-85203111191 (Scopus ID)
Available from: 2024-09-13 Created: 2024-09-13 Last updated: 2024-10-15Bibliographically approved
Svensson, B., Liuba, P., Wennick, A. & Berghammer, M. (2023). "I Dread the Heart Surgery but it Keeps My Child Alive"-Experiences of Parents of Children with Right Ventricular Outflow Tract Anomalies during the Assessment for Cardiac Reoperation. Congenital Heart Disease, 18(3), 349-359
Open this publication in new window or tab >>"I Dread the Heart Surgery but it Keeps My Child Alive"-Experiences of Parents of Children with Right Ventricular Outflow Tract Anomalies during the Assessment for Cardiac Reoperation
2023 (English)In: Congenital Heart Disease, ISSN 1747-079X, E-ISSN 1747-0803, Vol. 18, no 3, p. 349-359Article in journal (Refereed) Published
Abstract [en]

Background: Parents of children with complex right ventricular outflow tract ( RVOT) anomalies are confronted with their child's need for heart surgery early in life and repeated reoperations later on. Preoperative assessment needs to be performed whenever an indication for reoperation is suspected. The aim was to illuminate the experiences of parents of children diagnosed with RVOT anomalies, in particular, how they experience their child's heart disease and everyday life during the assessment and after the decision on whether to perform a reoperation. Method: Individual interviews (n = 27) were conducted with nine parents on three occasions between 2014 and 2016 and analyzed using reflexive thematic analysis. Results: The analysis resulted in the following five main coexisting themes: The heart surgery keeps my child alive illuminates parents' experiences during and after the assessment and emphasizes that heart surgery, although dreaded, is central for their child's survival; Everyday struggles illuminates the different struggles parents had to face to ensure that their child would be in the best possible condition; the remaining three themes, Unconditional love, Trust in life, and Togetherness, illuminate the ways in which the parents gained inner strength and confidence in their everyday lives. Conclusion: Although the parents were grateful for the assessment and had learned to navigate among the fears it aroused, they experienced several distressing situations during the assessment process that should be addressed. By inviting both the parents and their child to participate in the child's care, individualized support can take into account the needs of both parents and child.

Place, publisher, year, edition, pages
Artech House, 2023
Keywords
Parents, children, right ventricular outflow tract anomalies, everyday life, heart surgery, reflexive thematic analysis
National Category
Nursing
Research subject
Care science
Identifiers
urn:nbn:se:mau:diva-63571 (URN)10.32604/chd.2023.028391 (DOI)001075644600007 ()2-s2.0-85162622676 (Scopus ID)
Available from: 2023-11-09 Created: 2023-11-09 Last updated: 2023-11-09Bibliographically approved
Svensson, B., Liuba, P., Wennick, A. & Berghammer, M. (2023). "The only thing I wonder is when I will have surgery again": everyday life for children with right ventricle outflow tract anomalies during assessment for heart surgery. Cardiology in the Young, 33(3), 396-401
Open this publication in new window or tab >>"The only thing I wonder is when I will have surgery again": everyday life for children with right ventricle outflow tract anomalies during assessment for heart surgery
2023 (English)In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 33, no 3, p. 396-401Article in journal (Refereed) Published
Abstract [en]

Many children with complex right ventricle outflow tract anomalies such as Tetralogy of Fallot, common arterial trunk, and pulmonary atresia with ventricular septal defect require repeated heart surgeries early in life, but also later throughout their lifetime, thereby emphasising the importance of careful life-long follow-up. The need for repeated heart surgeries during childhood is recognised as a heavy burden on the child. Optimising the time point for re-intervention is important, since delaying re-intervention for these children can lead to complications such as ventricular arrhythmias, heart failure, and death. To this purpose, thorough pre-operative assessment (henceforth named as assessment) including clinical examination, echocardiography, MRI, and exercise test need to be performed whenever the indication for reoperation is suspected. It is likely to believe that children who are going through this kind of assessment that may lead to heart surgery need extra support. According to previous research, children with complex heart disease fear for the possibility of surgery and the thought of future repeated heart surgery is associated with anxiety. This might have an impact on children's everyday life and in research nowadays involving children with CHD, the focus has changed from survival to how these children experience their everyday life. Earlier studies have shown that they experience physical activities limitation and feelings of isolation, but no study has yet studied how children with right ventricle outflow tract anomalies experience their everyday life. To be able to provide support, studies are needed to explore how these children experience the period from assessment to decision, as well as the months thereafter. Therefore, the aim of this study was to explore how children diagnosed with complex right ventricle outflow tract anomalies experience their heart disease and their everyday life during the assessment and after the decision on whether to perform a new cardiac surgery.

Place, publisher, year, edition, pages
Cambridge University Press, 2023
National Category
Cardiology and Cardiovascular Disease
Identifiers
urn:nbn:se:mau:diva-51014 (URN)10.1017/S1047951122000907 (DOI)000775661500001 ()35351230 (PubMedID)2-s2.0-85128447662 (Scopus ID)
Available from: 2022-04-08 Created: 2022-04-08 Last updated: 2025-02-10Bibliographically approved
Samuelsson, M., Wennick, A., Bengtsson, M., Lydrup, M.-L. & Jakobsson, J. (2023). 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. Journal of Patient-Reported Outcomes, 7(1), Article ID 100.
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
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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
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: 2024-06-11Bibliographically approved
Westerdahl, F., Carlson, E., Wennick, A. & Borglin, G. (2022). Bachelor nursing students´ and their educators´ experiences of teaching strategies targeting critical thinking: A scoping review. Nurse Education in Practice, 63, Article ID 103409.
Open this publication in new window or tab >>Bachelor nursing students´ and their educators´ experiences of teaching strategies targeting critical thinking: A scoping review
2022 (English)In: Nurse Education in Practice, ISSN 1471-5953, E-ISSN 1873-5223, Vol. 63, article id 103409Article, review/survey (Refereed) Published
Abstract [en]

AIM: The objective of this scoping review was to review the published literature on existing teaching strategies targeting bachelor nursing students' critical thinking and explore how these strategies are described by students and educators. The research questions were: (i) Which teaching strategies are described in the literature targeting critical thinking among nursing students? and (ii) How are these teaching strategies described and experienced by students and/or nurse educators?

BACKGROUND: Critical thinking is integrated in the many clinical assignments and responsibilities with which registered nurses are faced. Therefore, it is important that nurse educators implement teaching strategies supporting bachelor nursing students' development of critical thinking to prepare them for their professional responsibilities.

DESIGN: Scoping review, Open Science Framework (OSF) registries DOI: 10.17605/OSF.IO/D89SB.

METHODS: The scoping review followed the six steps of Arksey and O'Malley (2005). Systematic searches were conducted using the databases PubMed, CINAHL, ERIC, ERC and PsycINFO. Eligible studies were quality assessed and text excerpts answering the research questions were analysed by a thematic analysis.

RESULTS: Our findings represent 19 published studies and can be understood according to two themes: the importance of the educational conditions and the impact of implemented teaching strategies. The first theme reflected not only the descriptions of important traits in the educational milieu facilitating the development of critical thinking but also the importance of how the content targeting such skills were delivered and organised. The second theme mirrored descriptions of how the students, through the teaching strategies, realized the need for collaboration to facilitate critical thinking. Further, it showed how the teaching strategies fostered professional growth and learning adaptation, by encouraging the students to question their knowledge and facilitating their development of clinical knowledge.

CONCLUSIONS: The strategies used in the facilitation of critical thinking need to incorporate collaboration and student-centredness, creating a relaxed climate where the educators can assist through guidance and support. This calls for the implementation of teaching strategies whereby both educators and students are active in facilitating the learning environment.

Place, publisher, year, edition, pages
Elsevier, 2022
Keywords
Bachelor in Nursing, Critical thinking, Education, Educational research, Literature review, Nursing, Qualitative analysis, Teaching strategy
National Category
Nursing
Identifiers
urn:nbn:se:mau:diva-54115 (URN)10.1016/j.nepr.2022.103409 (DOI)000831354100002 ()35868062 (PubMedID)2-s2.0-85134843503 (Scopus ID)
Available from: 2022-08-02 Created: 2022-08-02 Last updated: 2024-02-05Bibliographically approved
Samuelsson, M., Jakobsson, J., Wennick, A., Lydrup, M.-L. & Bengtsson, M. (2022). Cancer specialist nurses' experiences of supporting family members of persons diagnosed with colorectal cancer: A qualitative study. European Journal of Oncology Nursing, 61, 102205-102205, Article ID 102205.
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
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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: 2024-06-17Bibliographically approved
Samuelsson, M., Wennick, A., Jakobsson, J. & Bengtsson, M. (2021). Models of support to family members during the trajectory of cancer: A scoping review. Journal of Clinical Nursing, 30(21-22), 3072-3098
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
Wennick, A., Schoug, D., Ekwall, A. & Axelsson, M. (2021). Translation, adaptation and testing of an emergency care satisfaction scale in Swedish pediatric emergency departments. BMC Pediatrics, 21(1), Article ID 486.
Open this publication in new window or tab >>Translation, adaptation and testing of an emergency care satisfaction scale in Swedish pediatric emergency departments
2021 (English)In: BMC Pediatrics, E-ISSN 1471-2431, Vol. 21, no 1, article id 486Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Pediatric healthcare today shows a rising demand for research focusing on children's perspectives on and consumer satisfaction with the nursing care they receive. Therefore, the purpose of this study was to translate and adapt the Consumer Emergency Care Satisfaction Scale (CECSS), a paper-based, self-administered 19-item questionnaire originally developed in the United States and targeted towards adults, and then test the new version in Swedish pediatric emergency departments.

METHODS: The study was designed with a two-phase approach. Firstly, a forward-backward translation of the CECSS, involving expert consensus, was performed, and then the questionnaire was adapted for children aged 10-18 and assessed for face and content validity. Secondly, the translated and adapted questionnaire was tested with a clinical sample for construct validity, internal consistency, and reliability. This last aspect was assessed using a structured telephone interview 7-10 days after the participant visited a pediatric emergency department. All children participating in this study gave their assent (< 15 years) or consent (≥ 15 years), and their guardian's written informed consent was also obtained.

RESULTS: The paper-based, self-administered 19-item Swedish version of the CECSS was tested on a clinical sample consisting of 203 nonurgent children (boys: n = 109, 53.7 % and girls: n = 94, 46.3 %) between 10 and 18 years (mean age 13.8, SD 2.29). The factor analysis revealed three factors that explain 63.1 % of the total variation in the 15 items. The Cronbach's alphas for the three dimensions (caring, teaching, and clinical competence) varied between 0.79 and 0.88. The intraclass correlation coefficient (ICC) for the entire Swedish version of the CECSS was 0.58, and the ICCs for the three dimensions varied between 0.56 and 0.71.

CONCLUSIONS: The results show that the developed Swedish Pediatric Consumer Emergency Care Satisfaction Scale (p-CECSS-S) is a valid, stable and easy-to-use-questionnaire that can be used to assess children's satisfaction with nursing care.

Place, publisher, year, edition, pages
BioMed Central, 2021
Keywords
CECSS, Children, Emergency departments, Reliability, Satisfaction, Translation, Validity
National Category
Nursing
Identifiers
urn:nbn:se:mau:diva-46856 (URN)10.1186/s12887-021-02961-0 (DOI)000714017300001 ()34727922 (PubMedID)2-s2.0-85118700834 (Scopus ID)
Available from: 2021-11-15 Created: 2021-11-15 Last updated: 2024-07-04Bibliographically approved
Samuelsson, M. & Wennick, A. (2020). An exploratory study of the everyday life of Swedish children on home parenteral nutrition and their families.. Journal of Pediatric Nursing: Nursing Care of Children and Families, 52, e84-e89, Article ID S0882-5963(19)30586-X.
Open this publication in new window or tab >>An exploratory study of the everyday life of Swedish children on home parenteral nutrition and their families.
2020 (English)In: 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) Published
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.

Place, publisher, year, edition, pages
Elsevier, 2020
Keywords
Child, Everyday life, Families' experiences, Home parenteral nutrition, Intestinal failure, Parenteral nutrition
National Category
Nursing
Identifiers
urn:nbn:se:mau:diva-14238 (URN)10.1016/j.pedn.2020.01.010 (DOI)000571855900026 ()32044196 (PubMedID)2-s2.0-85079196405 (Scopus ID)
Available from: 2020-03-31 Created: 2020-03-31 Last updated: 2024-06-17Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-8684-2537

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