Marianne Sjuls

• Sjuls, Marianne; Ludvigsen, Mette Spliid; Fegran, Liv & Robstad, Anja Nastasja (2026). Beyond standard care: Fathers’ perspectives on healthcare and related support services when caring for a child with a progressive life-limiting condition—A qualitative study. Palliative Medicine. ISSN 0269-2163. doi: https:/journals.sagepub.com/doi/10.1177/02692163261486220. Fulltekst i vitenarkiv Vis sammendrag

  Background: Fathers’ experiences are seldom reflected in paediatric palliative care research, and existing studies predominantly focus on malignant conditions. Less is known about fathers’ experiences with healthcare and related support services when caring for a child with a progressive life-limiting condition. These conditions are often marked by long and unpredictable trajectories and complex care needs. Aim: To gain an in-depth understanding of how fathers experience healthcare and related support services while caring for a child with a progressive life-limiting condition. Design: A qualitative interview study grounded in phenomenological hermeneutics. Setting/participants: Thirteen Norwegian fathers of children aged 1–18 years with a progressive life-limiting condition lasting ≥ 12 months. All children lived at home and received varying levels of respite or in-home care. Results: Through the analysis, we developed three themes: 1) Being David against Goliath—battling the system, 2) Being father to a child too complex for tick-box care and 3) Striving for equal recognition as caregivers. Conclusions: Fathers caring for a child with a progressive life-limiting condition experience fragmented healthcare and welfare services, which place substantial advocacy and coordination burdens on families. More flexible, coordinated and father-inclusive paediatric palliative care pathways are needed to recognise parental expertise and support both parents as equal caregivers.

• Sjuls, Marianne; Fegran, Liv; Ludvigsen, Mette Spliid & Robstad, Anja Nastasja (2025). Fathering a Child With a Progressive Life-Limiting Condition in the Context of Pediatric Palliative Care: A Qualitative Interview Study. Qualitative Health Research. ISSN 1049-7323. doi: https:/journals.sagepub.com/doi/10.1177/10497323251398383. Fulltekst i vitenarkiv Vis sammendrag

  Fathers report feeling sidelined and being treated as secondary parents in healthcare settings. Despite their vital caregiving contributions, fathers remain underrepresented in pediatric palliative care research, particularly outside oncological contexts. This qualitative study, using a phenomenological hermeneutical design, explores the lived experiences of Norwegian fathers raising children with progressive life-limiting conditions. Thirteen fathers of children aged 1–18 years participated in in-depth, semi-structured interviews conducted online or in person. All children had received a diagnosis at least 12 months prior, lived at home, and received varying levels of care support. The analysis followed a modified version of Ricoeur’s interpretation theory, as described by Lindseth and Norberg in their three-step phenomenological hermeneutical method, and revealed four themes: (1) “Balancing between grief and relief,” where fathers described emotional ambivalence during the diagnostic phase; (2) “Searching for stability in an unpredictable life,” where fathers often turned to information and peer support to manage uncertainty; (3) “Feeling homebound yet making space for life,” where many felt confined to the home but made deliberate efforts to create meaningful experiences for their children and themselves; and (4) “Juggling between being a dad, caregiver, and breadwinner,” where fathers navigated complex and often conflicting roles. The findings highlight the emotional and practical challenges fathers face and underscore the importance of recognizing their unique support needs. Proactive involvement in care planning, access to pediatric palliative care services, peer networks, and respite opportunities are essential not only for the child’s well-being but also to sustain fathers’ caregiving capacity.

• Sjuls, Marianne; Ludvigsen, Mette Spliid; Robstad, Anja Nastasja & Fegran, Liv (2023). Fathers' experiences of living with a child with a progressive life-limiting condition without curative treatment options: A qualitative systematic review. Journal of Advanced Nursing. ISSN 0309-2402. doi: 10.1111/jan.15884. Fulltekst i vitenarkiv Vis sammendrag

  Aim: To systematically review and synthesize findings across qualitative primary stud-ies about fathers' experiences of living with a child with a progressive life- limiting condition without curative treatment options (C3 conditions).Design: Systematic review and metasynthesis.Methods: Sandelowski and Barosso's qualitative research methodology guided this review and metasynthesis. A modification of Ricoeur's interpretation theory, de-scribed by Lindseth and Norberg, guided the synthesis of qualitative data. The quality of the studies was evaluated using the Joanna Briggs Institute Checklist for Qualitative Research.Data Sources: A systematic literature search was conducted on 6 May 2022 and up-dated on 19 July 2023 on MEDLINE, CINAHL Plus with Full Text, APA PsycInfo and Scopus. Inclusion criteria were English-written qualitative studies from the year 2000, from which we could extract data on fathers' experiences of living with a child from 0 to 18 years with a progressive life- limiting condition without curative treatment options.Results: Seven reports from Western countries contributed to the review. Through structural analysis, we developed the following themes: ‘Being shattered in the per-ception of fatherhood’, ‘Establishing a new normal’ and ‘Striving to be acknowledged as a part of the caring team’.Conclusion: Fathers had to establish a new normal, and they experienced anticipa-tory mourning, role conflicts and feeling sidelined in healthcare settings when living with a child with a C3 condition. An important issue for further research on paediatric palliative care (PPC) should be to include fathers in the research sample and report separately on fathers' or mothers' experiences instead of parents' experiences.Impact: The findings will be of interest to healthcare personnel and multidisciplinary teams working within PPC, as they give insight into fathers' experiences and suggest interventions to increase healthcare personnel's involvement with fathers, such as telemedicine. Reporting Method: Following EQUATOR guidelines, the study was reported accord-ing to the enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) framework.Patient or Public Contribution: No patient or Public Contribution.

• Sjuls, Marianne & Johannessen, Berit (2015). Foreldres opplevelser i intensivavdelingen. Sykepleien Forskning. ISSN 1890-2936. s. 248–255. doi: 10.4220/Sykepleienf.2015.55027. Fulltekst i vitenarkiv

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• Sjuls, Marianne (2025). Fedres rolle i barnepalliasjon. Fulltekst i vitenarkiv Vis sammendrag

  15 minutter muntlig innlegg på webinar arrangert av LEVENÅ (FRAMBU) og CHIP (OsloMet) om PhD-prosjekt fedre i barnepalliasjon

• Sjuls, Marianne (2023). Fathers experiences of having a child with a progressive life limiting disease without curative treatment options. Fulltekst i vitenarkiv Vis sammendrag

  Presentation of Pediatric Palliative Care in Norway and findings from qualitative systematic review about fathers experiences of having a child with a progressive life limiting disease without curative treatment options.

• Sjuls, Marianne (2022). Fathering children with a progresseive life-limiting condition in pediatric palliative care - a meta-synthesis. Fulltekst i vitenarkiv
• Sjuls, Marianne & Nygård, Ann Kristin (2022). AnatomUiA - læring på Instagram. Fulltekst i vitenarkiv
• Sjuls, Marianne (2021). Lærer studentene anatomi på Instagram. [Journal]. Tidsskriftet sykepleien. Fulltekst i vitenarkiv
• Sjuls, Marianne (2021). Lærer studentene anatomi på Instagram. [Journal]. Sykepleien. Fulltekst i vitenarkiv

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