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  • 1. Anderzén Carlsson, Agneta
    et al.
    Wahlqvist, Moa
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Health and family climate in families where one parent has deafblindness2019Conference paper (Refereed)
  • 2. Anderzén Carlsson, Agneta
    et al.
    Wahlqvist, Moa
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    The experience of family life when one parent has deafblindness - From the perspective of the partner2019Conference paper (Refereed)
  • 3. Anderzén Carlsson, Agneta
    et al.
    Wahlqvist, Moa
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    The lived experience of family life when one parent has deafblindness - from the perspective of the partner2019Conference paper (Refereed)
  • 4.
    Bergh, Ingrid
    et al.
    Högskolan i Skövde, Institutionen för vård och natur.
    Björk, Maria
    Högskolan i Skövde, Institutionen för vård och natur.
    Sense of coherence over time for parents with a child diagnosed with cancer2012In: BMC Pediatrics, E-ISSN 1471-2431, Vol. 12, article id 79Article in journal (Refereed)
    Abstract [en]

    Background: When a child is diagnosed with childhood cancer this creates severe stress in the parents. The aim of the study was to describe the sense of coherence and its change over time in a sample of parents of children diagnosed with cancer.

    Methods: The Swedish version of SOC (29 items) was used to measure the parents’ (n = 29) sense of coherence. Data were collected at four time-points: Time-point 1 at the time of diagnosis; time-point 2 during the treatment; time-point 3 after the child had completed their treatment and time-point 4 when the child had been off treatment for some years or had died.

    Results: The results showed that SOC in the investigated population is not stable over time. The parents decreased in total SOC between time-points 1, 2 and 3. Mothers had significantlyweaker total SOC score including the components Manageability and Meaningfulness at time-points 1 as well time-point 2 compared to the fathers. However, for the component Comprehensibility no significant differences were shown between mothers and fathers. This study indicates that mothers’ and fathers’ SOC scores change over time during the child’s cancer trajectory. However, the pattern in these changes varies between mothers and fathers.

    Conclusions: This study indicates that mothers and fathers may have different support needs during their child’s cancer trajectory.

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  • 5.
    Björk, Maria
    Högskolan i Skövde, Institutionen för vård och natur.
    Barn med tumörsjukdom2009In: Pediatrisk omvårdnad / [ed] Inger Hallström & Tor Lindberg, Stockholm: Liber, 2009, 1, p. 233-238Chapter in book (Other academic)
  • 6.
    Björk, Maria
    et al.
    Högskolan i Skövde, Institutionen för vård och natur.
    Jenholt Nolbris, Margaretha
    Institutionen för vårdvetenskap och hälsa, Sahlgrenska akademin, Göteborgs universitet / Centrum för barns rätt till hälsa, Drottning Silvias barn- och ungdomssjukhus, Göteborg.
    Hedman Ahlström, Britt
    Institutionen för omvårdnad, hälsa och kultur, Högskolan Väst, Trollhättan.
    Att vara barn och möta sjukdom2012In: Att möta familjer inom vård och omsorg / [ed] Benzein Eva, Hagberg Margaretha, Saveman, Britt-Inger, Lund: Studentlitteratur AB, 2012, 1, p. 191-206Chapter in book (Other (popular science, discussion, etc.))
  • 7.
    Björk, Maria
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Knutsson, S.
    Department of Health and Caring Sciences, Faculty of Health and Life Sciences, Linnaeus University, Växjö, Sweden.
    Odzakovic, Elzana
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. ADULT. Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.
    Hellström, A.
    Department of Health and Caring Sciences, Faculty of Health and Life Sciences, Linnaeus University, Kalmar, Sweden.
    Sandlund, C.
    Department of Neurobiology, Care Sciences and Society, Division of Family Medicine and Primary Care, Karolinska Institutet, Stockholm, Sweden.
    Ulander, M.
    Department of Biomedical and Clinical Sciences, Division of Neurobiology, Linköping University, Linköping, Sweden.
    Lind, J.
    Department of Biomedical and Clinical Sciences, Division of Neurobiology, Linköping University, Linköping, Sweden.
    Pakpour, Amir H.
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.
    Broström, Anders
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. ADULT.
    Validation of two brief instruments (the SURE and CollaboRATE) to measure shared decision-making in patients with restless legs syndrome2023In: Journal of Sleep Research, ISSN 0962-1105, E-ISSN 1365-2869Article in journal (Refereed)
    Abstract [en]

    Restless legs syndrome (RLS) is a common neurological disorder characterised by an urge to move arms and legs, usually associated with discomfort, pain, motor restlessness, and sleep disturbance. An individually adapted treatment is needed but difficult to optimise, which makes shared decision-making (SDM) important. However, brief validated instruments on how patients with RLS perceive their involvement in treatment decisions are lacking. Therefore, the aim was to validate two instruments, SURE (Sure of myself, Understand information, Risk–benefit ratio, Encouragement, i.e., to assess decisional conflict) and CollaboRATE (brief patient survey focused on SDM, i.e., to assess SDM), in patients with RLS. A cross-sectional design, including 788 participants with RLS (65% females, mean [SD] age 70.8 [11.4] years) from a national patient organisation for RLS, was used. A postal survey was sent out to collect data regarding weight, height, comorbidities, demographics, and RLS-related treatment data. The following instruments were included: the SURE, CollaboRATE, Restless Legs Syndrome-6 Scale, and eHealth Literacy Scale. Confirmatory factor analysis and Rasch models were used to assess the validity and reliability of the SURE and CollaboRATE. Measurement invariance, unidimensionality, and differential item functioning (DIF) across age, gender, and medication groups were assessed. The SURE and CollaboRATE were both identified as unidimensional instruments with satisfactory internal consistency. No DIF across age and gender was identified, while significant DIF was observed for both the SURE and CollaboRATE regarding medication use categories. However, both the SURE and CollaboRATE are potential instruments to be used in research, but also as reflection tools by healthcare professionals, patients, and students to explore and assess SDM, and support its development in clinical care.

  • 8.
    Björk, Maria
    et al.
    Högskolan i Skövde, Institutionen för vård och natur.
    Nordström, B.
    Division of Nursing, Department of Health Sciences, Lund University, Lund.
    Wiebe, T.
    Department of Pediatrics, Lund University Hospital, Lund, S-22185 Lund, Sweden.
    Hallström, I.
    Division of Nursing, Department of Health Sciences/The Vårdal Institute, Lund University, Lund, Sweden.
    Returning to a changed ordinary life - families' lived experience after completing a child's cancer treatment2011In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 20, no 2, p. 163-169Article in journal (Refereed)
    Abstract [en]

    The aim of the study was to illuminate the families' lived experience after completing a child's cancer treatment. The study took place at a University Hospital in southern Sweden. Interviews were carried out with 10 mothers, eight fathers, four patients and two siblings from a total of 10 families. The interviews were analysed with a hermeneutical phenomenological approach. One essential theme emerged from their stories, ‘returning to a changed ordinary life – incorporating a trying and contradictory experience’. The families felt relieved that the treatment was over yet they experienced strains in their daily life. Family members felt changed and especially the parents needed to focus on themselves in order to recover. Closeness with other people, especially their own family, was important. The previously sick children felt a loss of concern from their parents when treatment had ended, in contrast to siblings who experienced increased attention from their parents. Parents experienced being in uncharted territory and sometimes missed the security of hospital. For professionals it is important to offer the family a structured follow-up to help them in their daily life after the child's treatment is completed.

  • 9.
    Björk, Maria
    et al.
    Division of Nursing, Department of Health Sciences, Lund University, Lund, Sweden.
    Nordström, Berit
    Division of Nursing, Department of Health Sciences, Lund University, Lund, Sweden.
    Hallström, Inger
    Division of Nursing, Department of Health Sciences, Lund University, Lund, Sweden / Vårdal Institute, Lund University.
    Needs of young children with cancer during their initial hospitalization: An observational study2006In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 23, no 4, p. 210-219Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to describe young (under the age of 7) children's needs as expressed by their behavior, body language and verbal expression through observations during their initial hospitalization after being diagnosed with cancer. Twelve children under the age of seven were followed during 26 hours with non-participant unstructured observations. Field notes were written after each observation and transcribed into a narrative text, which was analyzed by content analysis at both manifest and latent level. Five themes were identified, of which "need to have the parent close by" was the most prominent. The other themes were "need to play and feel joy," "need for participation in care and treatment," "need for a good relationship with the staff," and "need for physical and emotional satisfaction." The results indicate that the children needed their parents and the parents' presence helped the children to express other needs. Professionals need to support the child and his or her parents so that the parents in their turn can support and alleviate their child's hospitalization and cancer treatment. 

  • 10.
    Björk, Maria
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Division of Nursing, Department of Health and Learning, University of Skövde, Sweden.
    Sundler, Annelie J.
    Division of Nursing, Department of Health and Learning, University of Skövde, Sweden.
    Hallström, Inger
    Department of Health Sciences, Faculty of Medicine, Lund University, Sweden.
    Hammarlund, Kina
    Division of Nursing, Department of Health and Learning, University of Skövde, Sweden.
    Like being covered in a wet and dark blanket – Parents' lived experiences of losing a child to cancer2016In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 25, p. 40-45Article in journal (Refereed)
    Abstract [en]

    Purpose The aim of this study was to illuminate parents' lived experiences of losing a child to cancer.

    Method Interviews and a narrative about parents' experiences of losing a child to cancer were gathered from six parents of children whom had participated in a longitudinal study across the child's illness trajectory. The analysis of the data was inspired by van Manen's hermeneutic phenomenological approach.

    Results One essential theme emerged: Like being covered in a wet and dark blanket, as well as six related themes: Feeling conflicting emotions, Preparing for the moment of death, Continuing parenting after death, Recollecting and sharing memories, Working through the sorrow and New perspectives in life.

    Conclusion There is a need for good palliative care. If not, there is a risk that the parent will perseverate and blame themselves for not being a good parent during the suffering child's last time in life. Meetings with the parents six months and two years after the child's death might facilitate healing through the grief process.

  • 11.
    Björk, Maria
    et al.
    Högskolan i Skövde, Institutionen för vård och natur.
    Thelin, Anna
    Ryhov Hospital, Jönköping.
    Peterson, Inger
    Ryhov Hospital, Jönköping.
    Hammarlund, Kina
    Högskolan i Skövde, Institutionen för vård och natur.
    A journey filled with emotions - mothers' experiences of breastfeeding their preterm infant in a Swedish neonatal ward2012In: Breastfeeding Review, ISSN 0729-2759, Vol. 20, no 1, p. 25-31Article in journal (Refereed)
    Abstract [en]

    The study took place in a 10-bed neonatal ward in a hospital in the south of Sweden and includes mothers having given birth to a preterm infant born before the 37th week of gestation. The aim of the study was to illuminate mothers' experiences of breastfeeding a preterm infant in a neonatal ward. Data collection includes written protocols from twelve mothers. These protocols were analysed thematically. The results indicated that the mothers should be offered a private place where they can breastfeed or express breastmilk, and that the breastmilk should not be placed in a shared area. The mothers described that they did not want to be separated from their preterm infant during the night. Finally, they also pointed out the importance of support from the health professionals for establishing an exclusive breastfeeding regime.

  • 12.
    Björk, Maria
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Wahlqvist, Moa
    Audiological Research Centre and SIDR, Faculty of Medicine and Health, Örebro University.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Anderzén-Carlsson, Agneta
    Audiological Research Centre and SIDR, Faculty of Medicine and Health, Örebro University.
    The consequences of deafblindness rules the family: Parents’ lived experiences of family life when the other parent has deafblindness2022In: The British Journal of Visual Impairment, ISSN 0264-6196, E-ISSN 1744-5809, Vol. 40, no 1, p. 18-28Article in journal (Refereed)
    Abstract [en]

    Deafblindness is a combined vision and hearing disability that restricts communication, access to information, and mobility, thus limiting a person’s activities and full participation in society. Literature on how this might affect the lives of family members is sparse. The aim of this study is to describe the lived experience of family life from the perspective of one parent when the other has deafblindness. Six partners of deafblind parents, four men and two women, agreed to participate. Three were deaf and communicated in Swedish sign language. Qualitative interviews were conducted and analysed using interpretative phenomenological analysis. Seven themes were identified during the analysis. When one parent has deafblindness, communication within the family and with people outside the family is affected. The non-deafblind partners tried to integrate deafblindness into everyday family life and constantly strove to compensate for the losses caused by deafblindness. They tried to enhance participation and engagement in everyday family life for the parent with deafblindness by facilitating communication and taking a greater part in some areas of their shared responsibilities at home. The results reveal that these partners often put themselves in second place. They and their families needed support to manage family life. Deafblindness affects the life of the entire family, and the non-deafblind partner has to take considerable responsibility for everyday life. Everyday life can be facilitated by an adapted environment and appropriate support, which should be offered to the entire family.

  • 13.
    Björk, Maria
    et al.
    Division of Nursing, Department of Health Sciences, Lund University, Lund, Sweden / Department of Pediatrics, Lund University Hospital, Lund, Sweden / Division of Nursing, Department of Health Sciences/The Vårdal institute, Lund University, Lund, Sweden.
    Wiebe, Thomas
    Division of Nursing, Department of Health Sciences, Lund University, Lund, Sweden / Department of Pediatrics, Lund University Hospital, Lund, Sweden / Division of Nursing, Department of Health Sciences/The Vårdal institute, Lund University, Lund, Sweden.
    Hallström, Inger
    Division of Nursing, Department of Health Sciences, Lund University, Lund, Sweden / Department of Pediatrics, Lund University Hospital, Lund, Sweden / Division of Nursing, Department of Health Sciences/The Vårdal institute, Lund University, Lund, Sweden.
    An Everyday Struggle - Swedish Families' Lived Experiences During a Child's Cancer Treatment2009In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 24, no 5, p. 423-432Article in journal (Refereed)
    Abstract [en]

    The aim was to elucidate families' lived experience during a child's cancer treatment. Interviews were conducted with members of 11 affected families. A hermeneutical phenomenological approach was chosen. "Focus on the ill child-An everyday struggle" emerged as an essential theme. The families' lived experience of daily life was described as "feeling drained," "disrupting family life," "feeling locked up and isolated," "retaining normality," "becoming experts," and "changing perspectives." The result indicates that life during a child's cancer treatment is a taxing period and that the entire family is in need of support to ease their burdens. 

  • 14.
    Björk, Maria
    et al.
    Department of Nursing, Lund University, Sweden.
    Wiebe, Thomas
    Department of Pediatrics, Lund University Hospital, Lund, Sweden.
    Hallström, Inger
    Department of Nursing/the Vårdal Institute, Lund University, Lund, Sweden.
    Striving to survive: Families' lived experiences when a child is diagnosed with cancer2005In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 22, no 5, p. 265-275Article in journal (Refereed)
    Abstract [en]

    When a child is ill with cancer, this affects the whole family for long periods. The aim of this study was to elucidate the family's lived experience when a child in the family was diagnosed with cancer. A descriptive inductive design with a hermeneutic phenomenological approach including interviews with 17 families (parents, children, and siblings) was chosen. The families' lived experience was described as a 2-fold essential theme comprising "a broken life world" and an immediate "striving to survive." The families' secure everyday life disappeared and was replaced by fear, chaos, and loneliness. When striving to make the child and the family survive, family members strove to feel hope and have a positive focus, to gain control, and to feel close to other people. Phenomenological human science research can deepen the understanding of the meaning of being a family with a child who is ill with cancer and can help pediatric oncology staff become increasingly thoughtful, and thus better prepared to take action to diminish the chaos occurring in the family. 

  • 15.
    Björklund, Ann-Christin
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Department of Pediatric Hematology and Oncology, Uppsala University Hospital, Uppsala, Sweden.
    Darcy, Laura
    Faculty of Caring Science, Work Life and Social Welfare, University of Borås, Borås, Sweden.
    Santacroce, Sheila Judge
    School of Nursing and Lineberger Comprehensive Cancer Center, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Department of Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD. Department of Mental Health, Norwegian Natural science and Technology Unversity, Trondheim, Norway.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Individual patterns of problems with participation, activity, body function and environment in everyday life for children who completed brain tumor treatment2023In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 45, no 23, p. 3841-3851Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The study purpose was to, with the help of ICF and the CPS model, describe and explain patterns of co-occurring problems with participation in everyday life activities, body functioning and environment for children who completed brain tumor treatment.

    MATERIALS AND METHODS: Hospital, habilitation and school records for nine children (5-11 yrs.) diagnosed with brain tumor, were retrospectively reviewed for everyday problems after treatment completion. These problems were linked to ICF codes. Median code distribution within ICF constructs participation, body function, body structure, activity, and environment were calculated to generate typical (close to median) and atypical (distant from median) patterns of problems on individual and group levels. Two children were in-depth analyzed with collaborative problem-solving (CPS) model to identify participation problems and plausible explanations.

    RESULTS: In total, 4543 ICF linked codes revealed similarities and differences between individuals. The selected child-cases displayed educational challenges and peer-relational problems. The ICF codes related to activity, body function and environment revealed plausible explanations for the children's documented problems with participation in everyday life.

    CONCLUSIONS: The combination of ICF and CPS can provide a comprehensive view of the child's problems and guide development of participation in everyday life-focused interventions for children treated for brain tumors.Implications for rehabilitationCare should be guided by interventions and support directed at individual children and their everyday life.The International Classification of Functioning, Disability and Health (ICF) framework can support identification of the individual child's patterns of problems and how these affects the child's everyday life.It is recommended to start by identifying participation problems when using ICF to identify and describe problems in children's natural settings.The collaborative problem-solving model can guide healthcare, habilitation and school services when identifying and acting on typical and atypical problem patterns experienced by these children.

  • 16.
    Björklund, Ann-Christin
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Santacroce, S. J.
    Enskär, Karin
    Malmö University.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    The documentation of everyday functioning in children with brain tumors in medical care, habilitation services and school – is there a coherent description?2019Conference paper (Refereed)
  • 17.
    Björklund, Ann-Christin
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Santacroce, Sheila Judge
    Univ N Carolina, Sch Nursing, Chapel Hill, NC, USA.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    The Documentation of Everyday Functioning in Children with Brain Tumors in Medical Care, Habilitation Services and School - is There a Coherent Description?2019In: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 66, no 4, SI, p. S437-S437Article in journal (Refereed)
  • 18.
    Björklund, Ann-Christin
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Department of Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Santacroce, Sheila Judge
    School of Nursing and Lineberger Comprehensive Cancer Center, The University of North Carolina at Chapel Hill, Chapel Hill, NC, United States.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Department of Care Science, Faculty of Health and Society, Malmö University, Malmo, Sweden.
    Carlstein, Stefan
    Jönköping University, The University Library. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD. Department of Care Science, Faculty of Health and Society, Malmö University, Malmo, Sweden.
    Using ICF to Describe Problems With Functioning in Everyday Life for Children Who Completed Treatment for Brain Tumor: An Analysis Based on Professionals’ Documentation2021In: Frontiers in Rehabilitation Sciences, ISSN 2673-6861, Vol. 2, article id 708265Article in journal (Refereed)
    Abstract [en]

    Background: Children treated for brain tumors often experience persistent problems affecting their activity performance and participation in everyday life, especially in school. Linking these problems to the International Classification of Functioning, Disability and Health (ICF) classification system can be described as affecting body function, activity performance, and/or participation. Services involved in the everyday life of the child have different focus and goals when meeting the child in context, which advantage the use of ICF to overcome this impediment to follow-up and provide comprehensive support for children who have completed treatment for a brain tumor.

    Aim: The aim of the study was to use the ICF classification system to describe how professionals in healthcare, habilitation, and school document problems with everyday life functioning at body, activity, and participation levels for children who completed treatment for a brain tumor.

    Materials and Methods: A retrospective review of records from healthcare, habilitation, and school concerning nine children completed treatment for brain tumor was implemented. Identified problems in everyday life were linked to ICF codes. Descriptive statistics of ICF-linked code frequency supplemented by network visualization diagrams viewing the co-occurrence between codes within the body, activity participation, and environmental components were performed.

    Results: Most documented problems were found in healthcare records, whereas the documentation in habilitation and school was sparse. The frequently occurring codes, independent of record source, were linked to the body function component, and ICF-linked problems in habilitation and school were salient in the activity and participation component. To gain a holistic picture of relations between ICF codes and problems, network visualization diagrams were used to illustrate clusters of problems.

    Conclusion: Code prevalence likely reflects where healthcare professionals and educators focus their attention when meeting the needs of children treated for a brain tumor in context. To maximize the comprehensive view of functioning and participation of children in everyday life, the full range of difficulties regarding body impairments, activity limitations, and participation restrictions must be identified and linked to each other in patterns of co-occurrence, which the ICF facilitate. However, ICF provides no guidance on how to identify networks of problems within the body, activity, and participation. Identifying such networks is important for building comprehensive interventions for children.

  • 19.
    Castor, C.
    et al.
    Department of Health Sciences, Faculty of Medicine, Lund University, Lund, Sweden.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Bai, J.
    Nell Hodgson Woodruff School of Nursing, Emory University, Atlanta, Georgia, USA.
    Berlin, H.
    Department of Pediatric Dentistry, Faculty of Odontology, Malmö University, Malmö, Sweden.
    Kristjansdottir, G.
    Faculty of Nursing, School of Health Science, University of Iceland, Reykjavik, Iceland.
    Kristjansdottir, O.
    Faculty of Nursing, School of Health Science, University of Iceland, Reykjavik, Iceland.
    Hansson, H.
    Department of Paediatrics and Adolescent Medicine, Copenhagen University Hospital Rigshospitalet, Copenhagen, Denmark; Department of Clinical Medicine, University of Copenhagen, Copenhagen, Denmark.
    Höök, A.
    Division of Anaesthetics and Sensory Organs Speciality Surgery, Linköping University Hospital, Linköping, Sweden.
    Stenström, P.
    Department of Pediatric Surgery, Skåne University Hospital, Lund University, Lund, Sweden; Department of Paediatrics, Faculty of Medicine, Lund University, Lund, Sweden.
    Nilsson, S.
    Department of Health Sciences, Faculty of Medicine, Lund University, Lund, Sweden; Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Psychometric evaluation of the electronic faces thermometer scale for pain assessment in children 8–17 years old: A study protocol2023In: Paediatric and Neonatal Pain, E-ISSN 2637-3807, Vol. 5, no 4, p. 99-109Article in journal (Refereed)
    Abstract [en]

    It is often a challenge for a child to communicate their pain, and their possibilities to do so should be strengthened in healthcare settings. Digital self-assessment provides a potential solution for person-centered care in pain management and promotes child participation when a child is ill. A child's perception of pain assessment differs when it is assessed using digital or analog formats. As we move into the digital era, there is an urgent need to validate digital pain assessment tools, including the newly developed electronic Faces Thermometer Scale (eFTS). This study protocol describes three studies with the overall aim to evaluate psychometric properties of the eFTS for assessing pain in children 8?17?years of age. A multi-site project design combining quantitative and qualitative methods will be used for three observational studies. Study 1: 100 Swedish-speaking children will report the level of anticipated pain from vignettes describing painful situations in four levels of pain and a think-aloud method will be used for data collection. Data will be analyzed with phenomenography as well as descriptive and comparative statistics. Study 2: 600 children aged 8?17?years at pediatric and dental settings in Sweden, Denmark, Iceland, and USA will be included. Children will assess their pain intensity due to medical or dental procedures, surgery, or acute pain using three different pain Scales for each time point; the eFTS, the Faces Pain Scale Revised, and the Coloured Analogue Scale. Descriptive and comparative statistics will be used, with subanalysis taking cultural context into consideration. Study 3: A subgroup of 20 children out of these 600 children will be purposely included in an interview to describe experiences of grading their own pain using the eFTS. Qualitative data will be analyzed with content analysis. Our pilot studies showed high level of adherence to the study procedure and rendered only a small revision of background questionnaires. Preliminary analysis indicated that the instruments are adequate to be used by children and that the analysis plan is feasible. A digital pain assessment tool contributes to an increase in pain assessment in pediatric care. The Medical Research Council framework for complex interventions in healthcare supports a thorough development of a new scale. By evaluating psychometric properties in several settings by both qualitative and quantitative methods, the eFTS will become a well-validated tool to strengthen the child's voice within healthcare.

  • 20.
    Darcy, Laura
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ. CHILD. School of Life Sciences, University of Skövde, Skövde, Sweden.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Knutsson, Susanne
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    The process of striving for an ordinary, everyday life, in young children living with cancer, at six months and one year post diagnosis2014In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 18, no 6, p. 605-612Article in journal (Refereed)
    Abstract [en]

    PURPOSE: Health care focus is shifting from solely looking at surviving cancer to elements of attention relating to living with it on a daily basis.The young child's experiences are crucial to providing evidence based care. The aim of this study was to explore the everyday life of young children as expressed by the child and parents at six months and one year post diagnosis.

    METHODS: Interviews were conducted with children and their parents connected to a paediatric oncology unit in Southern Sweden. A qualitative content analysis of interview data from two time points, six months and one year post diagnosis, was carried out.

    RESULTS: The process of living with cancer at six months and at one year post diagnosis revealed the child's striving for an ordinary, everyday life. Experiences over time of gaining control, making a normality of the illness and treatment and feeling lonely were described.

    CONCLUSION: Nurses have a major role to play in the process of striving for a new normal in the world post-diagnosis, and provide essential roles by giving the young child information, making them participatory in their care and encouraging access to both parents and peers. Understanding this role and addressing these issues regularly can assist the young child in the transition to living with cancer. Longitudinal studies with young children are vital in capturing their experiences through the cancer trajectory and necessary to ensure quality care.

  • 21.
    Darcy, Laura
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD. Jönköping University, School of Health and Welfare, HHJ. SALVE (Social challenges, Actors, Living conditions, reseach VEnue).
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    ICF applications in health care for children with cancer in Sweden2017In: An emerging approach for education and care: Implementing a worldwide classification of functioning and disability / [ed] S. Castro & O. Palikara, London: Routledge, 2017, p. 178-186Chapter in book (Refereed)
    Abstract [en]

    The International Classification of Functioning, Disability and Health (ICF) and its version for children and youth, the ICF-CY, can contribute to the present knowledge on the lives of young children with cancer, with an international and interdisciplinary language. In this context, the term health can be seen as a multidimensional concept in which both illness and non-illness/well-being are dimensions that can be present at the same time, rather than two opposite concepts. Health is the result of a continuous process rather than something that one individual has; it is a resource for everyday life rather than the objective of living (WHO, 1986). The ICF was developed to classify different dimensions on individuals’ health as a unified standardised common language and framework, to be used across disciplines (WHO, 2007). It acknowledges that health and illness are complex concepts and promotes a biopsychosocial model of health, in which the context is as important as the individual and his/her needs. The view of health as functioning in everyday life can be operationalised using the ICF model of body structure, body function, activities and participation and environmental factors (Rosenbaum & Gorter, 2012).

  • 22.
    Darcy, Laura
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD. University of Borås, Borås, Sweden.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Knutsson, Susanne
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD. Jönköping University, School of Health and Welfare, HHJ, Dep. of Behavioural Science and Social Work.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Following young children's health and functioning in everyday life through their cancer trajectory2016In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 33, no 3, p. 173-189Article in journal (Refereed)
    Abstract [en]

    Background: Knowledge of living with childhood cancer, through the trajectory, is sparse.

    Aim: The aim of this study was to follow young children’s health and functioning in everyday life through their cancer trajectory.

    Methods: Data were gathered longitudinally from a group of 13 young children and their parents connected to a pediatric oncology unit in Sweden. The International Classification of Functioning, Disability and Health for Children and Youth structure was used to identify difficulties in health and functioning in everyday life, in interview and questionnaire data. Descriptive statistical analysis was performed to show patterns of difficulty over a 3-year period from diagnosis.

    Results: Difficulties experienced by children declined and changed over time. An increase in difficulties with personal interactions with others and access to and support from health care professionals was seen 2 to 3 years after diagnosis and start of treatment. Similar patterns are seen within individual children’s trajectories in relation to diagnosis but individual patterns were seen for each child.

    Conclusions and Clinical Implications: Health care professionals need to plan for ongoing contact with school services and information and support pathways, beyond the treatment period. A person-centered philosophy of care is required throughout the cancer trajectory.

  • 23.
    Darcy, Laura
    et al.
    Faculty of Caring Science, Work Life and Social Welfare, University of Borås, Borås, Sweden.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Young children's experiences of living an everyday life with cancer – A three year interview study2019In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 39, p. 1-9Article in journal (Refereed)
    Abstract [en]

    Purpose

    The young child's experiences of living with cancer are crucial to providing evidence based care. This study explores and describes experiences of everyday life of young children with cancer, over a three year period from diagnosis.

    Method

    This is a longitudinal, inductive interview study with young children with cancer, and their parents. Interviews from shortly after diagnosis, six and 12 months after diagnosis have been reanalysed. Interviews with the same children and their parents from 18 to 36 months after diagnosis have been analysed for the first time in the present paper. A longitudinal temporal analysis at category level for five synchronic data sets forms the basis for the results.

    Results

    The child living with cancer over a three year period is described as a child apart, striving to live an everyday life. This description is built on three categories: I want to be a child like any other, I need security and control and I feel lonely and left out. Young children with cancer actively strive to understand their illness, participate in care and live an ordinary everyday life- but with ongoing feelings of social isolation and loneliness.

    Conclusions

    Young children with cancer need access to and ongoing contact with peers and preschool. A structured follow-up throughout the cancer trajectory and not just during active treatment, is necessary. A child-centred philosophy of care would guide the child towards attainment of health and wellbeing.

  • 24.
    Darcy, Laura
    et al.
    Institution of Health Science, University College Borås.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Simeonsson, Rune J
    Petersson, Christina
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Health and functioning in the everyday lives of young children with cancer: documenting with the International Classification of Functioning, Disability and Health - Children and Youth (ICF-CY).2015In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 41, no 3, p. 475-482Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Health care focus is shifting for children from surviving childhood cancer to living with it on a daily basis. There is a need to document health and function in the everyday lives of young children with cancer using the multidimensional framework and language of the International Classification of Functioning, Disability and Health - Children and Youth (ICF-CY).

    AIMS: The aims of this study were (1) to document health and functioning in the everyday lives of young children with cancer using ICF-CY codes and (2) to identify a comprehensive code set that can aid clinical assessment.

    METHOD: Interviews with children diagnosed with cancer and their parents, were transcribed, reviewed for content and coded to the ICF-CY using linking procedures.

    RESULTS: A comprehensive code set (n = 70) for childhood cancer was identified. The majority of content identified to codes was related to activity and participation describing social relations with family, peers and professionals, preschool attendance and play, as well as issues related to support and independence.

    CONCLUSIONS: The ICF-CY can be used to document the nature and range of characteristics and consequences of cancer experienced by children. The identified comprehensive code set could be helpful to health care professionals, parents and teachers in assessing and supporting young children's health and everyday life through the cancer trajectory. The comprehensive code set could be developed as a clinical assessment tool for those caring for young children with cancer. The universal language of the ICF-CY means that the utility of a clinical assessment tool based on identified codes can have wide reaching effects for the care of young children with cancer.

  • 25.
    Darcy, Laura
    et al.
    Department of Caring Science, Faculty of Caring Science, Work Life and Social Welfare, University of Borås, Borås, Sweden.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    The development of the Clinical Assessment Tool "Health and Everyday Functioning in Young Children with Cancer"2020In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 46, no 4, p. 445-456Article in journal (Refereed)
    Abstract [en]

    Key messages

    • The aim of this study was to select and validate the content of a clinical assessment tool (CAT) for health and everyday functioning in young children with cancer.
    • Items were developed based on frequently occurring ICF-CY codes identified in the transcripts of 12 interviews with young children with cancer and their parents.
    • The CAT consists of 52 items grouped in four dimensions, “The child her/himself”, “The child’s everyday life”, “The child’s need for support” and “The child’s contacts with health care”.
    • The items correlate well with known research results
    • The CAT can be used by both parents and health care personnel to highlight aspects of care for the young child with cancer
  • 26.
    Enskär, Karin
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ. CHILD. School of Life Science, University of Skövde, Sweden.
    Knutsson, Susanne
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Darcy, Laura
    Department of Health Science, University College Borås, Sweden.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    A Swedish perspective on nursing and psychosocial research in paediatric oncology: A literature review2015In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 19, no 3, p. 310-317Article, review/survey (Refereed)
    Abstract [en]

    PURPOSE: A dramatic improvement in outcomes of survival rates of childhood cancer has been seen. Caring science research is central in providing skills and knowledge to the health care sector, but few overviews of the content of published research have been carried out. The aim of this review was to investigate the content and methodology of published studies in paediatric oncology relevant to caring science, and also to compare possible differences in content and method of the published studies from the nursing and psychosocial perspectives.

    METHOD: A systematic literature review was performed of 137 published articles on paediatric oncology relevant to caring science in Sweden.

    RESULTS: The results show that most of the studies were descriptive or comparative ones with a quantitative design. Most of them focused on parents (43%) or children (28%). Most of the studies investigated wellbeing (88%), using questionnaires (54%) or interviews (38%). Several different measurement instruments had been used. While the results were often clearly presented, the clinical implications were more diffuse. The most acknowledged research fund was the Swedish Childhood Foundation (75%).

    CONCLUSIONS: To reflect the children' perspectives in paediatric oncology require that future researchers take on the challenge of including children (even young ones) in research. The use of a limited number of agreed measurement instruments is desirable. The biggest challenge for the future is to make a shift from explorative to intervention studies. There is an urgent need to transform research results into clinical practice.

  • 27.
    Enskär, Karin
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Darcy, Laura
    University of Borås, Sweden.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Knutsson, Susanne
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Experiences of young children with cancer and their parents with nurses' caring practices during the cancer trajectory2020In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 37, no 1, p. 21-34Article in journal (Refereed)
    Abstract [en]

    Children with cancer require repeated hospitalizations and the family's everyday life and routines undergo change. Concrete descriptions of how nurses act when caring for children with cancer throughout the various phases of care and treatment are sparsely highlighted in the literature. The aim of this study was to describe young children with cancer and their parents' experiences of nurses' caring practices over a 3-year period, from diagnosis to follow-up. This study is based on semistructured interviews with 25 children newly diagnosed with cancer, aged 1 to 6 years, and their parents, connected to a pediatric oncology unit in Sweden. Child and parent data were analyzed with a deductive content analysis using Swanson's theory of caring. The result shows that nurse care practices directed toward young children with cancer and their parents are to some extent similar across a 3-year period from diagnosis to follow-up but also differ in some ways. Nurses' caring practices aim to support children and parents in the transition to a "new normal." Child- and family-friendly care processes include the following: creating hope and a trustful relationship, asking rather than assuming, providing knowledge and information, performing tasks skillfully, displaying an interest in the child's and parents' life outside the hospital, and helping the family to trust in the future and other health care providers. Based on these results, we recommend the development of a standardized and structured nursing care plan or clinical guideline with detailed information on how to carry out clinical nurse care practices in the different phases.

  • 28.
    Enskär, Karin
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD. School of Life Science, University of Skövde, Skövde, Sweden.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Darcy, Laura
    Institution of Health Science, University College of Borås, Borås, Sweden.
    Knutsson, Susanne
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Institution of Health Science, University College of Borås, Borås, Sweden.
    An analytic review of clinical implications from nursing and psychosocial research within Swedish pediatric oncology2015In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 30, no 4, p. 550-559Article, review/survey (Refereed)
    Abstract [en]

    The purpose of this manuscript is to analyze researchers' suggestions for clinical implications of their findings as stated in recent published articles on nursing and psychosocial research within the setting of Swedish pediatric oncology. Identified categories included staff awareness of the effects of child illness on families; systems for care improvement; provision of quality of care, education and support; and empowerment of children and families. In order to be able to realize these clinical suggestions, expanded research is needed as well as continued education and support for staff. 

  • 29.
    Enskär, Karin
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Knutsson, Susanne
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Darcy, Laura
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science.
    A literature review of the results from nursing and psychosocial research within Swedish pediatric oncology2014In: Journal of Nursing & Care, ISSN 2167-1168, Vol. 3, no 6, p. 1-8Article, review/survey (Refereed)
    Abstract [en]

    The body of research-based knowledge in paediatric caring science has been increasing leading to dramaticimprovements in treatment. The purpose of this manuscript was to analyze results as stated by the researchers', inrecently published articles on nursing and psychosocial research, within Swedish pediatric oncology setting. Thiswas done through a review of 137 published articles about paediatric oncology related to caring science in Sweden.The result shows that the illness has affected, in both positive and negative ways, the wellbeing of everyone cominginto contact with the child. The cancer also causes distress related to all aspects of life including physical,psychological, existential and social. Mediating factors for the experience of distress and wellbeing are: disease andtreatment severity, age, gender and ethnicity of the participant, time since diagnosis, the use of internal and externalsupport, and the identity of the person reporting the data. Health promoting aspects frequently reported are: familytogetherness, coping strategies, engaging in normal life and activities, and quality of care which includes emotionalsupport, information and family participation in care. The hospital staff has to be aware of the psychosocial issuesexperienced by children with cancer and their families, and they have to acknowledge the value of formalinterventions, reporting benefits for children, families, and themselves.

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  • 30.
    Hansson, Helena
    et al.
    Department of Pediatric and Adolescent Medicine, Copenhagen University Hospital Rigshospitalet and Associate Professor at Copenhagen University, Copenhagen, Denmark; Department of Health Sciences, Lund University, Lund, Sweden.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Santacroce, Sheila Judge
    Beerstecher-Blackwell Distinguished Scholar at School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
    Raunkiaer, Mette
    Danish Knowledge Centre for Rehabilitation and Palliative Care (REHPA), Odense University Hospital, University of Southern Denmark, Nyborg, Denmark.
    End-of-life palliative home care for children with cancer: A qualitative study on parents' experiences2023In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 37, no 4, p. 917-926Article in journal (Refereed)
    Abstract [en]

    Background

    There is insufficient knowledge available about the impact of paediatric palliative care at home on meeting family needs and ensuring the highest quality of care for the dying child. The aim of this study was to elucidate parents' experiences of how and why home-based paediatric palliative care impacted the entire family during their child's final phase of life.

    Methods

    The study used a qualitative design. Semi-structured interviews were conducted with the bereaved parents of children who had received palliative care at home from a paediatric cancer hospital department programme that was based on collaboration with community nurses and the paediatric palliative care service. The interviews were transcribed verbatim, and qualitative content analysis was applied. The Ecocultural theory was used to explain the findings.

    Results

    Three main themes emerged: (1) involvement enabling a sense of control and coping, (2) sustaining participation in everyday family life routines and (3) making room for presence and comfort during and after the end-of-life trajectory.

    Conclusion

    End-of-life palliative care at home can enable parents and other family members to maintain a sense of control, presence and semblance of everyday life. It contributes to managing and alleviating the burden and distress during the last phase of the child's life and during bereavement. We suggest that healthcare professionals support family members in participation and daily life routines and activities during a child's EOL care, as it affects the well-being of the entire family.

  • 31.
    Henoch, Ingela
    et al.
    Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg.
    Browall, Maria
    Högskolan i Skövde, Institutionen för hälsa och lärande.
    Melin-Johansson, Christina
    Department of Health Sciences, Mid Sweden University, Östersund.
    Danielson, Ella
    Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg / Department of Health Sciences, Mid Sweden University, Östersund.
    Udo, Camilla
    Department of Health Sciences, Mid Sweden University, Östersund.
    Johansson Sundler, Annelie
    Högskolan i Skövde, Institutionen för hälsa och lärande.
    Björk, Maria
    Högskolan i Skövde, Institutionen för hälsa och lärande.
    Ek, Kristina
    Högskolan i Skövde, Institutionen för hälsa och lärande.
    Hammarlund, Kina
    Högskolan i Skövde, Institutionen för hälsa och lärande.
    Bergh, Ingrid
    Högskolan i Skövde, Institutionen för hälsa och lärande.
    Strang, Susann
    Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg / Angered Local Hospital, Gothenburg, Sweden.
    The Swedish version of the Frommelt attitude toward care of the dying scale: Aspects of validity and factors influencing nurses' and nursing students' attitudes2014In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 37, no 1, p. E1-E11Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Nurses' attitudes toward caring for dying persons need to be explored. The Frommelt Attitude Toward Care of the Dying (FATCOD) scale has not previously been used in Swedish language.

    OBJECTIVES: The objectives of this study were to compare FATCOD scores among Swedish nurses and nursing students with those from other languages, to explore the existence of 2 subscales, and to evaluate influences of experiences on attitudes toward care of dying patients.

    METHODS: A descriptive, cross-sectional, and predictive design was used. The FATCOD scores of Swedish nurses from hospice, oncology, surgery clinics, and palliative home care and nursing students were compared with published scores from the United States, Israel, and Japan. Descriptive statistics, t tests, and factor and regression analyses were used.

    RESULTS: The sample consisted of 213 persons: 71 registered nurses, 42 enrolled nurses, and 100 nursing students. Swedish FATCOD mean scores did not differ from published means from the United States and Israel, but were significantly more positive than Japanese means. In line with Japanese studies, factor analyses yielded a 2-factor solution. Total FATCOD and subscales had low Cronbach α's. Hospice and palliative team nurses were more positive than oncology and surgery nurses to care for dying patients.

    CONCLUSIONS: Although our results suggest that the Swedish FATCOD may comprise 2 distinct scales, the total scale may be the most adequate and applicable for use in Sweden. Professional experience was associated with nurses' attitudes toward caring for dying patients.

    IMPLICATION FOR PRACTICE: Care culture might influence nurses' attitudes toward caring for dying patients; the benefits of education need to be explored.

  • 32.
    Huus, Karina
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dept. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Sundqvist, Ann-Sofie
    Faculty of Medicine and Health, University Health Care Research Center, Örebro University, Örebro, Sweden.
    Anderzén-Carlsson, Agneta
    Faculty of Medicine and Health, University Health Care Research Center, Örebro University, Örebro, Sweden.
    Wahlqvist, Moa
    Faculty of Medicine and Health, University Health Care Research Center, Örebro University, Örebro, Sweden; Audiological Research Center, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dept. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD. The Swedish National Resource Center for Deafblindness, Lund, Sweden.
    Living an ordinary life - yet not: the everyday life of children and adolescents living with a parent with deafblindness2022In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 17, no 1, article id 2064049Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION: The family life of people living with one family member with deafblindness has been sparsely described.

    PURPOSE: The aim of the study was to explore how children experience their everyday family life when having a parent with deafblindness.

    METHODS: An explorative study in which data have been collected by qualitative interviews of children. Qualitative content analysis has been used for analysing the data.

    RESULTS: Overall theme; Living an ordinary life-yet not, is based on four categories with subcategories. A family like any other describes: Having the same family life as their friends, Acting like other children and It is what it is. Different everyday life describes: Acknowledging differences, Adjusting to the parent's needs and Financial strain. Being there for the parent describes: Helping the parent and Protecting the parent from harm. Being emotionally affected describes: Feelings of frustration, Feelings of compassion and Need for support.

    CONCLUSION: Children as relatives of parents with deafblindness have been given a voice. The children live an ordinary life, but at the same time a different ordinary life. Professionals need to take the child and their needs into account when support is given.

  • 33.
    Höök, A.
    et al.
    Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Castor, C.
    University of Gothenburg Centre for Person-Centred Care (GPCC), Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Forsgren, E.
    Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Muszta, A.
    Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Nilsson, S.
    Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Content validity of the electronic faces thermometer scale for pain in children: is a picture worth more than a thousand words?2024In: Frontiers in Pain Research, ISSN 2673-561X, Vol. 5, article id 1372167Article in journal (Refereed)
    Abstract [en]

    Introduction: Early recognition of pain in children is crucial, and their self-report is the primary source of information. However, communication about pain in healthcare settings can be challenging. For non-verbal communication regarding different symptoms, children prefer digital tools. The electronic Faces Thermometer Scale (eFTS) utilizes a universal design with colors, face emojis, and numbers on an 11-point scale (0–10) for pain assessment. The aim of this study was to establish content validity of the eFTS for pain assessments in children. Methods: A mixed methods design was used. The study took place at a university hospital in eastern Sweden, involving 102 children aged 8–17 years who visited outpatient clinics. Participants were presented with 17 pictures representing varying pain levels and asked to assess hypothetical pain using the eFTS. A think-aloud approach was employed, prompting children to verbalize their thoughts about assessments and the eFTS. Quantitative data were analyzed using descriptive and comparative statistics, together with a qualitative approach for analysis of think-aloud conversations. Results: A total of 1,734 assessments of hypothetical pain using the eFTS were conducted. The eFTS differentiated between no pain (level 0–1) and pain (level 2–10). However, no clear agreement was found in the differentiation between hypothetical pain intensity levels (level 2–10). The analysis revealed that children utilized the entire scale, ranging from no pain to high pain, incorporating numbers, colors, and face emojis in their assessments. Discussion: The variability in assessments was influenced by prior experiences, which had an impact on the statistical outcome in our study. However, employing the think-aloud method enhances our understanding of how children utilize the scale and perceive its design, including the incorporation of emotion-laden anchors. Children express a preference for using the eFTS to assess their pain during hospital visits.

  • 34.
    Knutsson, Susanne
    et al.
    Linnaeus Univ, Fac Hlth & Life Sci, Dept Hlth & Caring Sci, S-35195 Vaxjo, Sweden.;Linnaeus Univ, Ctr Interprofess Collaborat Emergency Care CICE, Vaxjo, Sweden..
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Odzakovic, Elzana
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.
    Hellstrom, Amanda
    Linnaeus Univ, Fac Hlth & Life Sci, Dept Hlth & Caring Sci, Kalmar, Sweden..
    Sandlund, Christina
    Care Sci & Soc, Dept Neurobiol Care Sci & Soc, Huddinge, Sweden.;Acad Primary Hlth Care Ctr, Reg Stockholm, Stockholm, Sweden..
    Ulander, Martin
    Linkoping Univ, Dept Biomed & Clin Sci, Div Neurobiol, Linkoping, Sweden.;Linkoping Univ Hosp, Dept Clin Neurophysiol, Linkoping, Sweden..
    Lind, Jonas
    Linkoping Univ, Dept Biomed & Clin Sci, Div Neurobiol, Linkoping, Sweden.;Cty Hosp Ryhov, Dept Internal Med, Sect Neurol, Jonkoping, Sweden..
    Fridlund, Bengt
    Linnaeus Univ, Ctr Interprofess Collaborat Emergency Care CICE, Vaxjo, Sweden..
    Pakpour, Amir H.
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.
    Broström, Anders
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Linkoping Univ Hosp, Dept Clin Neurophysiol, Linkoping, Sweden.;Western Norway Univ Appl Sci, Dept Hlth & Caring Sci, Bergen, Norway..
    The ethos brief index-validation of a brief questionnaire to evaluate wellness based on a holistic perspective in patients with restless legs syndrome2024In: Sleep and Breathing, ISSN 1520-9512, E-ISSN 1522-1709Article in journal (Refereed)
    Abstract [en]

    Purpose The aim of this study was to validate the Ethos Brief Index (EBI) in patients with Restless Legs Syndrome (RLS).Methods A cross-sectional design, including 788 subjects with RLS (65% women, 70.8 years, SD 11.3) from the Swedish RLS Association, was used. A postal survey was sent out to collect data regarding socio demographics, comorbidities, and RLS-related treatment data. Questionnaires included were EBI, the Restless Legs Syndrome-6 Scale (RLS-6), Restless Legs Syndrome-Quality of Life questionnaire (RLSQoL), the Insomnia Severity Index (ISI), and the Epworth Sleepiness Scale (ESS). The validity and reliability of the EBI were investigated using Rasch and confirmatory factor analysis (CFA) models. Measurement invariance, unidimensionality, and differential item functioning (DIF) across age and gender groups, as well as insomnia, daytime sleepiness, RLS-related QoL and RLS severity were assessed.Results The results supported the unidimensionality of the EBI in the CFA (i.e., explaining 61.5% of the variance) and the Rasch model. The reliability of the EBI was confirmed using composite reliability and Cronbach's alpha. No DIF was identified for gender, age, insomnia, daytime sleepiness, RLS severity or RLS-related QoL.Conclusion The EBI showed good validity and reliability and operated equivalently for male and female patients with RLS. Accordingly, healthcare professionals can use the EBI as a psychometrically sound tool to explore and identify patient-centered problems related to the whole life situation.

  • 35.
    Larsson, Margaretha
    et al.
    University of Skövde, Skövde, Sweden.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Ekebergh, Margaretha
    Linnæus University, Växjö, Sweden.
    Sundler, Annelie Johansson
    University of Skövde, Skövde, Sweden.
    Striving to make a positive difference: school nurses’ experiences of promoting the health and well-being of adolescent girls2014In: Journal of School Nursing, ISSN 1059-8405, E-ISSN 1546-8364, Vol. 13, no 5, p. 358-365Article in journal (Refereed)
    Abstract [en]

    In Sweden, school nurses are part of the School Health Service with the main objective of health promotion to support students' health and attainment of educational goals. The aim in this phenomenological study was to illuminate the experiences of school nurses in promoting the health and well-being of adolescent girls. Seventeen school nurses were interviewed, both in groups and individually, to facilitate personal disclosure and expressions from their lived experiences. To achieve their goal of improving the health of adolescent girls, school nurses require flexibility in their approach and in endeavoring to make a positive difference they experience many challenges. This study concluded that school nurses can tactfully provide adolescent girls with knowledge and health guidance adjusted to individual needs and empowering the individual girl to participate in her own health process.

  • 36.
    Larsson, Margaretha
    et al.
    Faculty of Health and Life Sciences, Linnaeus University of Växjö, Växjö, Sweden.
    Sundler, Annelie Johansson
    School of Health and Education, University of Skövde, Skövde, Sweden.
    Ekebergh, Margaretha
    Faculty of Health and Life Sciences, Linnaeus University of Växjö, Växjö, Sweden.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Altering the Parenting Role: Parents’ Experience of Supporting the Health and Well-Being of Their Adolescent Girls2015In: Child and Youth Care Forum, ISSN 1053-1890, E-ISSN 1573-3319, Vol. 44, no 3, p. 419-432Article in journal (Refereed)
    Abstract [en]

    Background

    In research the relationships between parents and their adolescent daughters have been viewed from problem oriented perspectives, usually exploring negative effects and health-related problems. Health and well-being are complex phenomena and knowledge is needed on how parents can support the health and well-being of their daughter.

    Objectives

    The aim of this study was to illuminate parents’ experiences of supporting the health and well-being of their adolescent girls.

    Methods

    A descriptive design with a phenomenological approach including interviews, individually or in group with ten mothers and five fathers was conducted.

    Results

    Supporting the health and well-being of adolescent girls was experienced as challenging. The parents needed to altering the parenting role: from being the one who had previously set the limits they needed to rethink and be available for support. In this process interplay, communication and trust were important to support the health and well-being of the girls in an efficient way. This meaning was further illuminated by four constituents: Balancing the need for control, maintaining a trusting relationship, interplay to facilitate their daughters’ transition to independence, and an ambiguous parenting role.

    Conclusions

    This study highlights the importance of parents being involved in the everyday life of their adolescent daughter to support her health and well-being. The parents’ ability to contribute to the health and well-being of their girl seemed in this study dependent on their ability to communicate and alter the parenting role with sensitivity to the lifeworld of the adolescent girl.

  • 37.
    Lin, Chung-Ying
    et al.
    Department of Rehabilitation Sciences, The Hong Kong Polytechnic University, Hung Hom, Hong Kong.
    Imani, Vida
    Pediatric Health Research Center, Tabriz University of Medical Sciences, Tabriz, Iran.
    Broström, Anders
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. ADULT.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Hodges, Eric A.
    School of Nursing, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
    Pakpour, Amir H.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Social Determinants of Health Research Center, Research Institute for Prevention of Non-Communicable Diseases, Qazvin University of Medical Sciences, Qazvin, Iran.
    Psychological distress and quality of life in Iranian adolescents with overweight/obesity: mediating roles of weight bias internalization and insomnia2020In: Eating and Weight Disorders, ISSN 1124-4909, E-ISSN 1590-1262, Vol. 25, p. 1583-1592Article in journal (Refereed)
    Abstract [en]

    PURPOSE: To examine whether weight-related self-stigma (aka weight bias internalization) and insomnia are potential predictors of psychological distress and quality of life (QoL) among Iranian adolescents with overweight (OW)/obesity (OB). To examine whether weight-related self-stigma and insomnia are potential mediators in the relationship between excess weight and health outcomes of distress and QoL.

    METHODS: All participants (n = 934; 444 males; mean age = 15.7 ± 1.2 years; zBMI = 2.8 ± 1.0) completed questionnaires on weight-related self-stigma and insomnia at baseline. Six months later, they completed questionnaires on psychological distress and QoL to assess health outcomes. Relationships among variables were tested using mediation analyses with bootstrapping method.

    RESULTS: Weight-related self-stigma significantly mediated the effects of zBMI on psychological distress (effect = 0.22; bootstrapping SE = 0.09; 95% CI = 0.08, 0.45), psychosocial QoL (effect = - 0.64; bootstrapping SE = 0.19; 95% CI = - 1.10, - 0.32), and physical QoL (effect = - 1.35; bootstrapping SE = 0.54; 95% CI = - 2.43, - 0.26). Insomnia also significantly mediated the effects of zBMI on psychological distress (effect = 2.18; bootstrapping SE = 0.31; 95% CI = 1.61, 2.81), psychosocial QoL (effect = - 0.89; bootstrapping SE = 0.33; 95% CI = - 1.60, - 0.28), and physical QoL (effect = - 0.83; bootstrapping SE = 0.42; 95% CI = - 1.69, - 0.02). Full mediations were found in psychosocial QoL; partial mediations were found in psychological distress and physical QoL.

    CONCLUSIONS: Weight-related self-stigma and insomnia were significant mediators in the effects of excess weight on health outcomes. Therefore, it is important to identify and treat weight-related self-stigma and insomnia for adolescents with OW/OB.

    LEVEL OF EVIDENCE: Level V, cross-sectional descriptive study.

  • 38.
    Miri, Seyedeh Fatemeh
    et al.
    Qazvin University of Medical Sciences, Qazvin, Iran.
    Javadi, Maryam
    Qazvin University of Medical Sciences, Qazvin, Iran.
    Lin, Chung-Ying
    Hong Kong Polytechnic University, Kowloon, Hong Kong.
    Griffiths, Mark D.
    Nottingham Trent University, Nottingham, United Kingdom.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Pakpour, Amir H.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Social Determinants of Health Research Center, Qazvin University of Medical Sciences, Qazvin, Iran.
    Effectiveness of cognitive-behavioral therapy on nutrition improvement and weight of overweight and obese adolescents: A randomized controlled trial2019In: Diabetes & Metabolic syndrome: clinical Research & Reviews, ISSN 1871-4021, E-ISSN 1878-0334, Vol. 13, no 3, p. 2190-2197Article in journal (Refereed)
    Abstract [en]

    Aim: To assess the effectiveness of a cognitive-behavioral treatment (CBT) program on weight reduction among Iranian adolescents who are overweight. Methods: Using a randomized controlled trial design, 55 adolescents who were overweight (mean [SD] age = 14.64 [1.69] years; zBMI = 2.18 [0.65]) were recruited in the CBT program and 55 in the treatment as usual (TAU; mean age = 14.88 [1.50]; zBMI = 2.09 [0.57]) group. All the participants completed several questionnaires (Child Dietary Self-Efficacy Scale; Weight Efficacy Lifestyle questionnaire; Physical Exercise Self-Efficacy Scale; Pediatric Quality of Life Inventory; and self-reported physical activity and diet) and had their anthropometrics measured (height, weight, waist and hip circumferences, and body fat). Results: The CBT group consumed significantly more fruits and juice, vegetables, and dairy in the 6-month follow-up as compared with the TAU group (p-values <0.001). The CBT group consumed significantly less sweet snacks, salty snacks, sweet drinks, sausages/processed meat, and oils in the six-month follow-up compared with the TAU group (p-values<0.001). Additionally, the waist circumference, BMI, waist-hip ratio, and fat mass were significantly decreased in the CBT group in the six-month follow-up compared with the TAU group (p-values<0.005). The CBT group significantly improved their psychosocial health, physical activity, and health-related quality of life (p-values<0.001). Conclusion: The CBT program showed its effectiveness in reducing weight among Iranian adolescents who were overweight. Healthcare providers may want to adopt this program to treat excess weight problems among adolescents. 

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  • 39.
    Mårtensson, Sophie
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Hodges, Eric A.
    School of Nursing, The University of North Carolina at Chapel Hill, Chapel Hill, NC, United States.
    Knutsson, Susanne
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Department of Health and Caring Sciences, Faculty of Health and Life Sciences, Linnaeus University, Växjö, Sweden.
    Hjelm, Carina
    Department of Health, Medicine and Caring Sciences, Linköping University, Linköping, Sweden.
    Broström, Anders
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. ADULT. Department of Clinical Neurophysiology, Linköping University Hospital, Linköping, Sweden.
    Swanson, Kirsten M.
    Seattle University, Seattle, WA, United States.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Caring Behavior Coding Scheme based on Swanson’s Theory of Caring – development and testing among undergraduate nursing students2021In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 35, no 4, p. 1123-1133Article in journal (Refereed)
    Abstract [en]

    Rationale: To maintain patients’ dignity and well-being and alleviate suffering, it is essential that healthcare providers engage in caring behaviours. Yet, every year patient boards receive an increasing number of complaints from patients and significant others regarding healthcare providers’ non-caring behaviours. Defining and measuring both verbal and nonverbal caring and non-caring behaviour in healthcare delivery is vital to address such complaints. However, no studies were found that incorporated a comprehensive theory of caring to code encounters between healthcare providers and patients.

    Aim: The aim was to develop and test a Caring Behavior Coding Scheme based on Swanson’s Theory of Caring.

    Method: An instrument development process was used for behavioural coding including observational data from thirty-eight video recordings collected in an undergraduate nursing course at a Swedish University. The observational data involved interactions between undergraduate nursing students and a standardised patient.

    Result: The Caring Behavior Coding Scheme (the CBCS), contains seventeen verbal and eight nonverbal behavioural codes, categorised as caring and non-caring in accordance with Swanson’s Theory of Caring. Content and face validity were assessed. Timed-event sequential continuous coding was performed in INTERACT software. The coder achieved excellent agreement with the developed gold standard (k = 0.87) and excellent mean inter-rater reliability (k = 0.82). All domains in Swanson’s Theory of Caring were observed and coded in the interaction.

    Discussion/Conclusion: The CBCS is a theory-based instrument that contributes to research on healthcare providers’ behavioural encounters. It uses verbal and nonverbal caring and non-caring behavioural codes to assess the alignment of both the theory and practice of caring. The CBCS can contribute to both development and measurement of interventions focused on improving healthcare providers’ caring behaviour with the intended outcome of patient well-being.

  • 40.
    Mårtensson, Sophie
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD. School of Health Sciences, University of Skövde, Skövde, Sweden.
    Knutsson, Susanne
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD. Faculty of Health and Life Sciences, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Hodges, Eric A.
    School of Nursing, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
    Sherwood, Gwen
    School of Nursing, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
    Broström, Anders
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. ADULT. Department of Clinical Neurophysiology, Linköping University Hospital, Linköping, Sweden.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Development of caring behaviour in undergraduate nursing students participating in a caring behaviour course2023In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: In today's complex healthcare organisations there is an increasing recognition of the need to enhance care quality and patient safety. Nurses' competence in demonstrating caring behaviour during patient encounters affects how patients experience and participate in their care. Nurse educators are faced with the challenge of balancing the demand for increasingly complex knowledge and skills with facilitating students' abilities essential to becoming compassionate and caring nurses.

    AIM: The aim was to describe undergraduate nursing students' development of caring behaviour while participating in a caring behaviour course.

    METHOD: This pilot study used a quantitative observational design. At a university in Sweden, video-recorded observational data from twenty-five students were collected in the first and last weeks of a full-time five-week Caring Behaviour Course (the CBC). In total, 56-min video-recorded simulation interactions between a student and a standardised patient were coded by a credentialed coder using a timed-event sequential continuous coding method based on the Caring Behaviour Coding Scheme (the CBCS). The CBCS maps the five conceptual domains described in Swanson's Theory of Caring with related sub-domains that align with Swanson's qualities of the Compassionate Healer and the Competent Practitioner. The CBCS contains seventeen verbal and eight non-verbal behavioural codes, categorised as caring or non-caring.

    RESULTS: Between the two simulations, most verbal caring behaviours increased, and most non-verbal caring behaviours decreased. Statistically significant differences between the simulations occurred in the sub-domains Avoiding assumptions and Performing competently/skilfully in the quality of the Competent Practitioner. Most observed caring behaviours aligned with the Compassionate Healer.

    CONCLUSION: Generally, the students' development of caring behaviours increased while participating in the CBC. Using a structured observational behavioural coding scheme can assist educators in assessing caring behaviour both in education and in practice, supporting caring as the universal foundation of nursing and a key to patient safety.

  • 41.
    Mårtensson, Sophie
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dept. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Knutsson, Susanne
    School of Nursing, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA; Faculty of Health and Life Sciences, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Hodges, Eric A.
    Faculty of Health and Life Sciences, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Sherwood, Gwen
    Faculty of Health and Life Sciences, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Broström, Anders
    Jönköping University, School of Health and Welfare, HHJ, Dept. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. ADULT. Department of Clinical Neurophysiology, Linköping University Hospital, Linköping, Sweden.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dept. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Undergraduate Nursing Students' Experiences of Learning Caring Using a Variety of Learning Didactics2022In: International journal for human caring, ISSN 1091-5710, Vol. 26, no 3, p. 145-158Article in journal (Refereed)
    Abstract [en]

    This study examines undergraduate nursing students' experiences of participating in a Caring Behavior Course using various learning didactics. Twenty-five students participated in one of five focus group interviews with data analyzed according to qualitative content analysis. The main theme to emerge, an insightful and sudden awakening that caring is not only theoretical words, was further explained with three themes and nine subthemes. The Caring Behavior Course demonstrates effective learning didactics to develop awareness of values that influence caring behaviors and can contribute to patient well-being, particularly relevant for the care challenges in the time of COVID-19 and beyond.

  • 42.
    Mårtensson, Sophie
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Knutsson, Susanne
    School of Nursing, The University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA; Faculty of Health and Life Sciences, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Hodges, Eric A.
    Faculty of Health and Life Sciences, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Sherwood, Gwen
    Faculty of Health and Life Sciences, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Broström, Anders
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. ADULT. Department of Clinical Neurophysiology, Linköping University Hospital, Linköping, Sweden.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Undergraduate nursing students' experiences of practicing caring behaviours with standardised patients2023In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 37, no 1, p. 271-281Article in journal (Refereed)
    Abstract [en]

    Rationale

    Undergraduate nursing students' learning opportunities to practice caring behaviours to assure compassionate and competent nursing practice with standardised patients are few. Earlier studies primarily focused on practicing communication skills in relation to mental health or developing psychomotor skills while caring for a patient with a specific diagnosis.

    Aim

    The study aim was to describe undergraduate nursing students' experiences of practicing caring behaviours with a standardised patient.

    Method

    A sample of forty-eight undergraduate nursing students in semester four at a school of nursing in southern Sweden, enrolled in a full-time, 5-week, on-campus elective caring behaviour course, were at the first and last week individually video-recorded during two caring behaviour simulations encountering a standardised patient. After observing each of their video-recordings, students completed written reflections focusing on their own compassionate and competent verbal and nonverbal caring behaviour. In total, 96 individual written reflections were analysed using qualitative content analysis to describe the experience.

    Results

    One main theme emerged: The challenge of being mindfully present in patient encounters. Four themes further described the experience: A challenging but realistic learning experience, learning the impact of nonverbal behaviour, recognising the complexity of verbal behaviour, and learning to be with the patient instead of only doing for the patient.

    Conclusion

    When caring is intertwined with visible and realistic nursing practice in simulations using standardised patients it facilitates undergraduate nursing students learning compassionate and competent caring behaviour. The learning experience opened the students' eyes to the impact of practicing caring, recognising that being with is not the same as doing for the patient, and thus, how challenging it is to be mindfully present in patient encounters. Designing caring behaviour simulations with standardised patients is a feasible and efficacious educational learning didactic to facilitate students' learning caring behaviour and enhancing patients' experiences.

  • 43.
    Mårtensson, Sophie
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dept. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Knutsson, Susanne
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Department of Health and Caring Sciences, Faculty of Health and Life Sciences, Linnaeus University, Växjö, Sweden.
    Hodges, Eric A.
    School of Nursing, The University of North Carolina at Chapel Hill, Chapel Hill, NC, United States.
    Sherwood, Gwen D.
    Faculty of Health and Life Sciences, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Broström, Anders
    Jönköping University, School of Health and Welfare, HHJ, Dept. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. ADULT.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dept. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Assessing the impact of a caring behavior course on undergraduate nursing students’ caring behaviorManuscript (preprint) (Other academic)
  • 44.
    Møller Christensen, Berit
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dept. of Natural Science and Biomedicine. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dept. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Almqvist, Lena
    Jönköping University, School of Education and Communication, HLK, CHILD. School of Health, Care and Social Welfare, Mälardalen University, Västerås, Sweden.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dept. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Patterns of support to adolescents related to disability, family situation, harassment, and economy2019In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 45, no 5, p. 644-653Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION: Adolescents need support from family, friends, and teachers to increase their involvement in everyday life. Their environment and their own characteristics also influence their ability to participate in an everyday supportive environment.

    AIM: The aim of the study was to investigate patterns of support from parents, teachers, and very important persons such as peers to the ability of adolescents to participate in everyday life, as well as the importance of interpersonal relations as experienced by the adolescents.

    METHOD: The study has a cross-sectional design. The data compiled and analysed in this study are part of a longitudinal study of adolescents and their development into adults-LoRDIA (Longitudinal Research on Development In Adolescence). A combination of person- and variable-oriented design was used to capture patterns of support.

    RESULTS: Adolescents with a complicated home situation and low economic prerequisites who received little support from parents and friends participated to a lower degree in home activities. A substantial number of these adolescents had self-reported neurodevelopmental disorders and, as a group, were more often exposed to harassment. However, these adolescents participated to a higher extent in school activities, although they received little support from the teachers. The adolescents who received most support from parents and teachers were those with a country of origin other than Sweden and those who lived with both of their parents and had more siblings than average. However, this did not mean that they participated to a higher extent in home and school activities.

  • 45.
    Nogéus, Maria
    et al.
    Skaraborgs Sjukhus, Skövde, Sweden.
    Nilsson, Stefan
    Institute of Health and Care Sciences, University of Gothenburg, Centre for Person-Centred Care, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Pediatric Nurses’ Person-Centered Approach to Nausea Management in Children With Cancer2023In: Journal of Pediatric Hematology/Oncology Nursing, ISSN 2752-7530, E-ISSN 2752-7549, Vol. 40, no 2, p. 91-99Article in journal (Refereed)
    Abstract [en]

    Background: Nausea is a problematic side effect of childhood cancer treatment. However, it is not clear what interventions and assessments pediatric oncology nurses make when caring for a child with nausea. A person-centered approach can illuminate nausea management in pediatric care. The aim was to investigate how pediatric nurses retrieve the patient's narrative, establish partnership, and document nausea in hospitalized children with cancer.

    Methods: Individual interviews with nurses were conducted and analyzed using deductive content analysis with the framework of person-centered care.

    Results: The pediatric nurses described retrieving the patient's narrative regarding their nausea by listening to and observing the child. The pediatric nurses tried to establish a partnership with the child by allowing previous knowledge and the child's own preferences guide the interventions that focus on decreasing the child's nausea. The pediatric nurses also documented the effect of the given interventions and described the child's nausea using subjective words. When planning for the child's care it was rare for the nurses to have a documented care plan, but they did review documentation of previously administered interventions to plan for future care.

    Discussion: The results highlight the pediatric nurses’ willingness to listen to the child, but also emphasize the need to further include the child and the parents in the partnership and documentation of nausea management. Collaboration with the child and the parents contributes to higher quality care and a partnership with trust.

  • 46.
    Odzakovic, Elzana
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. ADULT. Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Ahlberg, Beth Maina
    Department of Sociology, Uppsala University, Uppsala, Sweden.
    Bradby, Hannah
    Department of Sociology, Uppsala University, Uppsala, Sweden.
    Hamed, Sarah
    Department of Sociology, Uppsala University, Uppsala, Sweden.
    Thaper-Björkert, Suruchi
    Department of Government, Uppsala University, Uppsala, Sweden.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Discussing racism in healthcare: A qualitative study of reflections by graduate nursing students2023In: Nursing Open, E-ISSN 2054-1058, Vol. 10, no 6, p. 3677-3686Article in journal (Refereed)
    Abstract [en]

    Aim: The aim is to illustrate and analyse reflections from graduate nursing students over their experience of discussing racism in healthcare in an educational intervention.

    Design: A qualitative, descriptive design was adopted.

    Methods: Data were collected through written reflections and analysed through content analysis. In total, 81 students participated in the intervention; 39 paediatric and 42 public health care nursing students. Of those, 27 participants gave consent to have their written reflections included in the study.

    Results: Three main categories were developed in the content analysis of student reflections: (a) the implicit embeddedness of racism in healthcare organization; (b) the effect of racism on interactions with patients; and (c) a growing awareness of one's own understanding of racism. This study indicates that student nurses discussed racism as relevant to understanding good clinical practice for the benefit of patients and work-based wellbeing of staff. This recognition of the organizational nature of racism warrants nursing leaders and managers to include racism as a social determinant of health in the undergraduate and graduate curricula to educate the next generation of nursing about racism.

  • 47.
    Olsson, Cecilia
    et al.
    Karlstad University, Department of Health Sciences, Karlstad, Sweden.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science.
    Ringnér, Anders
    Umeå University, Department of Nursing, Umeå, Sweden.
    The Pediatric Inventory for Parents - Swedish Translation and Psychometric Testing.2018In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 42, p. E97-E102Article in journal (Refereed)
    Abstract [en]

    The Pediatric Inventory for Parents (PIP) measures parental stress related to caring for a child with an illness. However, no Swedish translation is available.

    PURPOSE: This study reports a Swedish translation of the PIP and psychometric properties of the instrument.

    DESIGN AND METHODS: This is a descriptive/methodological paper. The PIP was translated and culturally adapted to Swedish, and comprehensibility was tested. Data were collected twice from 48 parents of children with different illnesses, and initial psychometric properties of the instrument were examined. The IES-R (Impact of Event Scale-Revised) was used for concurrent validity.

    RESULTS: The Swedish version of the PIP demonstrated good correlations with the IES-R, and temporal changes were similar. Endorsement frequencies and test-retest were also satisfactory. When comparing groups of parents, the parents of children with cancer were statistically significantly more distressed, both on total score and for emotional distress and role function. Discriminative validity was demonstrated by comparing parents of children with cancer with parents of children with other diseases.

    CONCLUSIONS: The Swedish version of the PIP seems to be a valid and reliable instrument. However, as we used relatively small sample, for the future, we suggest further testing with larger samples.

    PRACTICE IMPLICATIONS: Clinicians and researchers seeking to measure parental distress in chronic illness could use the Swedish version of the PIP.

  • 48.
    Ringnér, A.
    et al.
    Umeå University, Department of Nursing, Umeå, Sweden.
    Olsson, C.
    Karlstad University, Department of Health Sciences, Karlstad, Sweden.
    Eriksson, E.
    Umeå University, Department of Nursing, Umeå, Sweden.
    From, I.
    Umeå University, Department of Nursing, Umeå, Sweden.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    A moment just for me – parents’ experiences of an intervention for person-centred information in paediatric oncology2021In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 51, article id 101923Article in journal (Refereed)
    Abstract [en]

    Purpose: Information can help parents of children with cancer by reducing uncertainty and giving them a sense of control in a chaotic situation. Although providing information to parents is a core activity of paediatric oncology nursing, few studies focus on interventions for informing parents. Thus, the aim of this study is to evaluate parents’ experiences after participating in a person-centred information intervention for parents of children with cancer. Method: This study is part of a process evaluation of a person-centred informational intervention in paediatric oncology for patients’ parents. Qualitative semi-structured interviews with 13 parents who had taken part in the intervention were analysed using qualitative content analysis. Results: An opening for healing emerged as the overarching theme, consisting of three categories. Gaining a deeper understanding of the entire situation describes how parents benefitted from processing current topics and moving forward by learning. Caring reflections in a safe space describes how parents appreciated having a moment just for themselves and feeling better by venting their feelings. Meeting a competent and compassionate nurse describes how parents experienced trust and being listened to. Conclusion: Having individual information meetings integrated as a primary nursing responsibility, mediated by competent and compassionate nurses also responsible for the care of the child, could enhance person-centred care and individualise parental education.

  • 49.
    Ringnér, Anders
    et al.
    Department of Nursing, Umeå University, Umeå, Sweden.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Olsson, Cecilia
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Department of Bachelor Education, Lovisenberg Diaconal University College, Oslo, Norway.
    Effects of Person-Centered Information for Parents of Children With Cancer (the PIFBO Study): A Randomized Controlled Trial2023In: Journal of Pediatric Hematology/Oncology Nursing, ISSN 2752-7530, E-ISSN 2752-7549, Vol. 40, no 6, p. 400-410Article in journal (Refereed)
    Abstract [en]

    Background: Conveying information to parents is a core part of pediatric oncology nursing; however, most published interventions do not tailor information to individual parental needs.

    Objective: To evaluate the effect on parental illness-related stress of person-centered information provided to parents of children with cancer.

    Methods: A multicenter, unblinded randomized controlled trial with two parallel arms recruiting parents of children diagnosed within the past two months from two tertiary children's cancer centers in Sweden. Parents were randomized using sealed envelopes prepared and opened by an independent person. Parents in the intervention arm met four times with experienced nurses trained in the intervention, whereas controls received standard care. The effect of the intervention was measured five times regarding parents’ illness-related stress. Secondary outcomes were psychosocial states, experiences with healthcare providers, and received information. Further, we collected process data on the intervention's content and fidelity.

    Results: Of the 32 parents included and analyzed in the study, 16 were randomized to the intervention, which addressed a broad variety of topics. The intervention increased parents’ knowledge about the biophysiological and functional aspects of their child's illness, but it had no measurable effect on their distress.

    Discussion: Although fidelity to the intervention protocol was sufficient, the study was flawed by recruitment difficulties, primarily due to organizational factors, which may have prevented us from observing any possible effects on psychosocial distress. Having a person-centered perspective could be promising for future studies aimed at parents of children with cancer. (Registered at Clinicaltrials.gov, number NCT02332226.).

  • 50.
    Ringnér, Anders
    et al.
    Department of Nursing, Umeå University, Umeå, Sweden.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Olsson, Cecilia
    Department of Health Sciences, Karlstad University, Karlstad, Sweden.
    What Was on the Parents’ Minds?: Changes Over Time in Topics of Person-Centred Information for Mothers and Fathers of Children with Cancer2023In: Comprehensive Child and Adolescent Nursing, ISSN 2469-4207, E-ISSN 2469-4193, Vol. 46, no 2, p. 114-125Article in journal (Refereed)
    Abstract [en]

    Acquiring information about one’s child’s cancer diagnosis is a complex and ever-changing process, and parents’ needs change over time. As yet, we know little about what information parents require at different stages of their child’s illness. This paper is part of a larger randomized control trial studying the parent-centered information given to mothers and fathers. The aim of this paper was to describe the topics addressed in person-centered meetings between nurses and parents of children with cancer and how those changed over time. Using qualitative content analysis, we analyzed nurses’ written summaries of 56 meetings with 16 parents and then computed for each topic the percentage of parents who brought it up at any time during the intervention. The main categories were Child’s disease and treatment (addressed by 100% of parents), Consequences of treatment (88%), Emotional management for the child (75%), Emotional management for the parent (100%), Social life of the child (63%), and Social life of the parent (100%). Different topics were addressed at different points in time, and fathers raised more concerns about the child’s emotional management and the consequences of treatment than mothers. This paper suggests that parental information demands change over time and differ between fathers and mothers, implying that information should be person-centered. Registered at Clinicaltrials.gov (NCT02332226).

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