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  • 1.
    Jonsson, Marina
    et al.
    Stockholm County Council / Karolinska Institutet.
    Schuster, Marja
    The Swedish Red Cross University College, Department of Technology and Welfare.
    Protudjer, Jennifer L P
    Karolinska Institutet.
    Bergström, Anna
    Karolinska Institutet.
    Egmar, Ann-Charlotte
    The Swedish Red Cross University College, Department of Public Health and Medicine. Karolinska Institutet.
    Kull, Inger
    Karolinska Institutet / Sachs' Children's Hospital, Södersjukhuset.
    Experiences of Daily Life Among Adolescents With Asthma - A Struggle With Ambivalence2017In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 35, p. 23-29Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: There is limited knowledge about how adolescents with asthma view their disease in daily life and how these views impact on management. The aim of this study was to describe experiences of daily life, with particular focus on thoughts, feelings and management of adolescents with asthma.

    METHODS: In this qualitative study, data were obtained from 10 interviews with adolescents (aged 16-18 years) with asthma recruited from the Swedish population-based prospective birth cohort, BAMSE. Data were analysed through Systematic Text Condensation.

    RESULTS: Experiences of daily life among adolescents with asthma were defined in four categories: Insight and understanding; Asthma not the focus of daily life; Being acknowledged and, Being affected by asthma symptoms. The adolescents had developed an insight into and understanding of their disease, but did not want asthma to be the focus of their daily lives. The adolescents wanted their asthma to be acknowledged, but not to the point that they were defined by their asthma. They reported having many asthma symptoms, especially during physical activity, but also described a desire to feel healthy, "normal" and like their peers.

    CONCLUSIONS: Having asthma in adolescence involves several struggles with ambivalence between adapting socially, feeling healthy and managing one's asthma.

    IMPLICATIONS IN CLINICAL PRACTICE: The provision of person-centred care may be one way to handle the ambivalence among adolescents with asthma and thereby help them to manage their asthma.

  • 2.
    Nisell, Margret
    et al.
    Department of Woman and Child Health, Child and Adolescent Psychiatric Unit, Karolinska Institutet, Stockholm.
    Öjmyr-Joelsson, Maria
    Department of Woman and Child Health, Pediatric Surgery Unit, Karolinska Institutet, Stockholm.
    Frenckner, Björn
    Department of Woman and Child Health, Pediatric Surgery Unit, Karolinska Institutet, Stockholm.
    Rydelius, Per-Anders
    Department of Woman and Child Health, Child and Adolescent Psychiatric Unit, Karolinska Institutet, Stockholm.
    Christensson, Kyllike
    Department of Woman and Child Health, Reproductive and Perinatal Health Unit, Karolinska Institutet, Stockholm.
    How a family is affected when a child is born with anorectal malformation: Interviews with three patients and their parents2003In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 18, no 6, p. 423-432Article in journal (Refereed)
    Abstract [en]

    Increased knowledge about families with a malformed child affects nursing practice. This study illuminates the experiences and psychosocial situation of 3 patients with imperforate anus and their parents. A qualitative method has been used to analyze the data. We found that the parents’ experiences of suffering were overwhelming and that the 3 patients had been depressed during periods. The patients were not as open as their parents; we need to devise better tools to explore and understand children’s experiences. The children and their parents need special care and an opportunity to express their anxieties.

  • 3.
    Stålberg, Anna
    et al.
    Mälardalen University, Västerås, Sweden.
    Sandberg, Anette
    Mälardalen University, Västerås, Sweden.
    Söderbäck, Maja
    Mälardalen University, Västerås, Sweden.
    Child-centred Care: Health Professionals' Perceptions of What Aspects are Meaningful when using Interactive Technology as a Facilitator in Healthcare Situations2018In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 43, p. e10-e17Article in journal (Refereed)
    Abstract [en]

    Purpose: A prerequisite for child-centred care is children’s participation, which in paediatrics can partly be enhanced by using interactive technology solutions, for instance tablet or smartphone-based applications. These applications, however, mainly target older children. In a research project, a tablet-based application, i.e. a communication tool, was developed, meant to facilitate young children’s participation in healthcare situations. This study explored healthprofessionals’ perceptions of what aspects are meaningful when jointly using such an application in healthcare situations.

    Design/methods: Using the critical incident technique, 18 qualitative, semi-structured interviews focusing on critical incidents were performed with four health professionals who had used the interactive communication tool together with children in various healthcare situations. The data were analysed according to inductive content analysis.

    Results: Results showed that the health professionals described the use of the tool as meaningful because it provided information that helped the children increase their participation, modify their understanding of the situations, and reduce their fear. The tool was also perceived to contribute to a common language between the children and the professionals, which improved their overall communication.

    Conclusion: The introduction of an interactivecommunication tool in healthcare situations seemed to be beneficial for both the children and the health professionals.

    Practice implications: An interactive communication tool, facilitating both verbal and non-verbal communication, can reinforce children’s participation in healthcare situations and contribute to positive outcomes in the child-professional relationship, as well as in the situation itself.

  • 4.
    Wigander, Helena
    et al.
    Karolinska Institutet / Karolinska University Hospital.
    Öjmyr-Joelsson, Maria
    Karolinska Institutet / Karolinska University Hospital.
    Frenckner, Björn
    Karolinska Institutet / Karolinska University Hospital.
    Wester, Tomas
    Karolinska Institutet / Karolinska University Hospital.
    Nisell, Margret
    The Swedish Red Cross University College, Department of Health Sciences. Karolinska Institutet.
    Impact of Low Anorectal Malformation on Parenting Stress: A Mixed-Method Study2018In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 42, p. e45-e51Article in journal (Refereed)
    Abstract [en]

    The purpose of this study was to investigate parenting stress among parents of children with low ARM.

    STUDY AIMS: 1) Compare parenting stress among parents of children with low ARM, with parents of healthy children using questionnaires. 2) Identify subscales within the questionnaire which needed to be further explored. 3) Use semi-structured interviews with parents of children with low ARM, to explore parenting stress and to explain, expand and or support the quantitative findings.

    DESIGN AND METHODS: An explanatory sequential mixed methods design was used in this follow up study. The parents completed the Swedish Parenthood Stress Questionnaire (SPSQ), semi-structured interviews were conducted.

    RESULTS: Fifteen mothers and 13 fathers of children with low ARM age 8-18, returned completed questionnaires. A control group of 17 mothers and 6 fathers of healthy children age 8-18 that had visited the hospital for a minor procedure was recruited for comparison purposes. There were no significant differences found between index group and controls except in the subscale Incompetence, where parents of children with low ARM reported lower levels of stress compared to controls. Nine semi-structured interviews were conducted with parents of children with low ARM. Qualitative content analysis was used and revealed three themes - Communication between parents, Expectations of parenthood, and Challenges concerning parenthood.

    CONCLUSIONS: Parents of children with low ARM did not report high levels of stress. When interviewed, they told about earlier experiences of emotional stress, feelings of guilt, and chaos at the time the child was born and during infancy.

  • 5. Öjmyr-Joelsson, Maria
    et al.
    Nisell, Margret
    Frenckner, Björn
    Rydelius, Per-Anders
    Christensson, Kyllike
    A Gender Perspective on the Extent to which Mothers and Fathers Each Take Responsibility for Care of a Child with High and Intermediate Imperforate Anus2009In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 24, no 3, p. 207-215Article in journal (Refereed)
    Abstract [en]

    Imperforate anus is a malformation of the child's anus. Parents' experiences of responsibility for care of the child may differ. The aim of this study was to evaluate a gender perspective on the extent to which mothers and fathers each take responsibility for the care of a child with high and intermediate imperforate anus. Parents of children with imperforate anus and two control groups of children and parents participated. Data collection with questionnaires focusing on responsibility was performed. In conclusion, our study revealed additional evidence of unevenly divided parental responsibility for care of a child with a chronic condition. The mothers in this study were shown to be the primary caregiver.

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