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  • 1.
    Almqvist, Kjerstin
    et al.
    Department of Social and Psychological Studies, Karlstad University, Karlstad, Sweden.
    Källström, Åsa
    Örebro University, School of Law, Psychology and Social Work.
    Appell, Petra
    Department of Social and Psychological Studies, Karlstad University, Karlstad, Sweden.
    Anderzen-Carlsson, Agneta
    Örebro University, School of Health Sciences. Örebro University Hospital. Faculty of Health, Science, and Technology, Department of Health Sciences, Karlstad University, Karlstad, Sweden.
    Mothers’ opinions on being asked about exposure to intimate partner violence in child healthcare centres in Sweden2018In: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 22, no 2, p. 228-237Article in journal (Refereed)
    Abstract [en]

    Intimate partner violence (IPV) constitutes a hidden health risk for exposed mothers and children. In Sweden, screening for IPV in healthcare has only been routine during pregnancy, despite an increase in IPV following childbirth. The arguments against routine questions postpartum have concerned a lack of evidence of beneficial effects as well as fear of stigmatizing women or placing abused women at further risk. Increased understanding of women’s attitudes to routine questions may allay these fears. In this study, 198 mothers in 12 child healthcare centres (CHCs) filled in a short questionnaire about their exposure and received information on IPV at a regular baby check-up visit. The mothers’ lifetime prevalence of exposure to IPV was 16%. One hundred and twenty-eight mothers participated in a telephone interview, giving their opinion on the screening experience. The intervention was well-received by most of the mothers who reported that questions and information on IPV are essential for parents, considering the health risks for children, and that the CHC is a natural arena for this. Necessary prerequisites were that questioning be routine to avoid stigmatizing and be offered in privacy without the partner being present.

  • 2.
    Andersen, Randi Dovland
    et al.
    Department of Research, Telemark Hospital, Skien, Norway; Research Center for Habilitation and Rehabilitation Services and Models (CHARM), Institute of Health and Society, University of Oslo, Oslo, Norway.
    Genik, Lara
    Department of Psychology, University of Guelph, Guelph, ON, Canada.
    Alriksson-Schmidt, Ann I
    Department of Clinical Sciences Lund, Skåne University Hospital, Orthopedics, Lund University, Lund, Sweden.
    Anderzen-Carlsson, Agneta
    Örebro University, School of Health Sciences. Örebro University Hospital. University Health Care Research Center and Swedish Institute for Disability Research.
    Burkitt, Chantel
    Gillette Children's Specialty Healthcare, Saint Paul, MN, USA; Department of Educational Psychology, University of Minnesota, Minneapolis, MN, USA.
    Bruflot, Sindre K
    Telemark Chapter of the Norwegian Cerebral Palsy Association, Skien, Norway.
    Chambers, Christine T
    Departments of Psychology & Neuroscience and Pediatrics, Dalhousie University, Halifax, NS, Canada; Centre for Pediatric Pain Research, IWK Health Centre, Nova Scotia, Canada.
    Jahnsen, Reidun B
    Research Center for Habilitation and Rehabilitation Services and Models (CHARM), Institute of Health and Society, University of Oslo, Oslo, Norway; Department of Clinical Neurosciences for Children, Oslo University Hospital, Oslo, Norway.
    Jeglinsky-Kankainen, Ira
    Department of Health and Welfare, Arcada University of Applied Sciences, Helsinki, Finland.
    Kildal, Olav Aga
    Research Center for Habilitation and Rehabilitation Services and Models (CHARM), Institute of Health and Society, University of Oslo, Oslo, Norway; Department of Child and Adolescent Health Services, Telemark Hospital Trust, Skien, Norway.
    Ramstad, Kjersti
    Department of Paediatric Neurology, Oslo University Hospital, Oslo, Norway.
    Sheriko, Jordan
    Department of Pediatrics, Dalhousie University, Halifax, NS, Canada; Rehabilitation Services, IWK Health, Halifax, NS, Canada.
    Symons, Frank J
    Department of Educational Psychology, University of Minnesota, Minneapolis, MN, USA.
    Wallin, Lars
    School of Education, Health and Social Studies, Dalarna University, Falun, Sweden.
    Andersen, Guro L
    The Cerebral Palsy Registry of Norway, Vestfold Hospital Trust, Tønsberg, Norway; Department of Clinical and Molecular Medicine, Faculty of Medicine and Health Sciences, Norwegian University of Science and Technology, Trondheim, Norway.
    Pain burden in children with cerebral palsy (CPPain) survey: Study protocol2022In: Paediatric and Neonatal Pain, ISSN 2379-5824, Vol. 4, no 1, p. 11-21Article in journal (Refereed)
    Abstract [en]

    Pain is a significant health concern for children living with cerebral palsy (CP). There are no population-level or large-scale multi-national datasets using common measures characterizing pain experience and interference (ie, pain burden) and management practices for children with CP. The aim of the CPPain survey is to generate a comprehensive understanding of pain burden and current management of pain to change clinical practice in CP. The CPPain survey is a comprehensive cross-sectional study. Researchers plan to recruit approximately 1400 children with CP (primary participants) across several countries over 6-12 months using multimodal recruitment strategies. Data will be collected from parents or guardians of children with CP (0-17 years) and from children with CP (8-17 years) who are able to self-report. Siblings (12-17 years) will be invited to participate as controls. The CPPain survey consists of previously validated and study-specific questionnaires addressing demographic and diagnostic information, pain experience, pain management, pain interference, pain coping, activity and participation in everyday life, nutritional status, mental health, health-related quality of life, and the effect of the COVID-19 pandemic on pain and access to pain care. The survey will be distributed primarily online. Data will be analyzed using appropriate statistical methods for comparing groups. Stratification will be used to investigate subgroups, and analyses will be adjusted for appropriate sociodemographic variables. The Norwegian Regional Committee for Medical and Health Research Ethics and the Research Ethics Board at the University of Minnesota in USA have approved the study. Ethics approval in Canada, Sweden, and Finland is pending. In addition to dissemination through peer-reviewed journals and conferences, findings will be communicated through the CPPain Web site (www.sthf.no/cppain), Web sites directed toward users or clinicians, social media, special interest groups, stakeholder engagement activities, articles in user organization journals, and presentations in public media.

  • 3.
    Andersen, Randi Dovland
    et al.
    Department of Child and Adolescent Health Services, Telemark Hospital, Skien, Norway; Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institute, Stockholm, Sweden.
    Nakstad, Britt
    Department of Pediatric and Adolescent Medicine, Akershus University Hospital, Lørenskog, Norway; Institute of Clinical Medicine, Campus Ahus, University of Oslo, Lørenskog, Norway.
    Jylli, Leena
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institute, Stockholm, Sweden; Department of Anesthesia and Intensive Care, Pain Clinic, Karolinska University Hospital Huddinge, Sweden.
    Campbell-Yeo, Marsha
    School of Nursing, Faculty of Health Professions and Departments of Pediatrics, Psychology & Neuroscience, Dalhousie University, Halifax, Canada; Centre for Pediatric Pain Research, IWK Health Centre, Halifax, Canada.
    Anderzen-Carlsson, Agneta
    Örebro University, School of Health Sciences. Örebro University Hospital. University Health Care Research Center, Faculty of Medicine and Health, Örebro University, Örebro, Sweden; Faculty of Health, Science, and Technology, Department of Health Sciences, Nursing, Karlstad University, Karlstad, Sweden.
    The Complexities of Nurses' Pain Assessment in Hospitalized Preverbal Children2019In: Pain Management Nursing, ISSN 1524-9042, E-ISSN 1532-8635, Vol. 20, no 4, p. 337-344Article in journal (Refereed)
    Abstract [en]

    Background: Preverbal children are at increased risk for underassessment of pain. Pain is a social transaction involving the child in pain and the nurse assessor. However, our understanding of the nurse's part in this transaction is limited.

    Aims: The aim of this study was to explore nurses' assessment of pain in hospitalized preverbal children based on self-selected clinical examples.

    Design: Qualitative, descriptive design.

    Settings: Five different hospital units in Canada and Norway. All units had an observational pain scale for preverbal children available for use.

    Participants/Subjects: Nurses (N = 22) with >= 1 year experience caring for preverbal children.

    Methods: Individual, semistructured interviews. Data were analyzed using inductive thematic analysis.

    Results: Nurses' assessment of pain in hospitalized preverbal children emerged as a nonlinear complex process incorporating different actions and reflections in response to the child's situation and expression of distress. Information from parents was routinely included in the assessment, although further parental involvement varied considerably. Although each assessment was personalized to the individual child, the nurse used previous experiences to interpret observations of and information from the child and the parents. Few nurses described using structured pain scales, but when used, these scales were included as only one aspect of their overall assessment.

    Conclusions: Nurses preferred pain assessment based on clinical judgment and tailored to the individual child. Implementation strategies that aim to integrate structured pain scales with clinical judgment to assess pain may be more likely to succed. Further examination of this approach is warranted.

  • 4.
    Anderzen Carlsson, Agneta
    et al.
    Örebro University, School of Health Sciences. Örebro University Hospital.
    Leibring, Ingela
    Fear and coping during treatment for acute lymphatic leukemia: from the perspective of children 5-9 years old2018Conference paper (Refereed)
    Abstract [en]

    Background: The concept of fear can be defined as ”an unpleasant often strong emotion caused by expectation of danger”. It is reasonable to believe that fear and coping of fear, can vary during the course of treatment for ALL. The aim of the present study was to describe a longitudinal perspective on fear related to having ALL, based on children’s perspective, as well as to describe the strategies these children use when experiencing fear.

    Design: The study has a longitudinal descriptive qualitative design. Three girls and 10 boys, initially aged 5-9 were interviewed once to three times during their treatment period (approximately two months after the diagnosis, after one year and at the end of the 2.5-year long treatment). In total, 35 interviews were conducted. Data were analyzed using a matrix-based qualitative analysis method.

    Results: The children described fear of being subjected to needles and related to having a feeding tube, to remove adhesive tape and taking tablets, as well as fear related to the bodily changes caused by the ALL. Existential fears were most frequently mentioned at end of treatment. The children wanted to participate in their care. They used cognitive strategies, such as ”thinking the right way” and emotional strategies, such as crying out loud and kicking. The fears changed over time, but the fear of being subjected to needles remained for half of the children, but was less intense at the end of treatment. The strategies developed, and became more sophisticated over the treatment period.

    Conclusion: The fear changed throughout the course of treatment, and so did the strategies used. It is reasonable to believe that the need for support also vary, which is a topic for future research.

  • 5.
    Anderzen-Carlsson, Agneta
    Örebro University, School of Health Sciences. Örebro University Hospital. Audiological Research Centre, Örebro University, Örebro, Sweden.
    A qualitative evaluation of the National Expert Team regarding the assessment and diagnosis of deafblindness in Sweden2017In: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011, Vol. 19, no 4, p. 362-374Article in journal (Refereed)
    Abstract [en]

    Deafblindness is a rare condition with multiple causes. Given its rarity, professionals generally have limited knowledge of this condition and insufficient experience managing it. Accordingly, in Sweden, a National Expert Team was established to assess and diagnose deafblindness. The aim of this study was to identify the conceptions of persons with deafblindness, parents of children with deafblindness and professionals involved in their care, rehabilitation and education regarding their participation in the assessment and diagnostic procedures performed by this national team. A phenomenographic design was employed. The main findings were illustrated by five descriptive categories: An opportunity for improvement in daily living, ability to interact with the cream of the crop, personal effort, effects of genetics beyond drawing blood and limited professional interaction.

  • 6.
    Anderzen-Carlsson, Agneta
    Örebro University, School of Health Sciences. Örebro University Hospital. Audiological Research Centre.
    Health care consumption in infants with CHARGE syndrome: a case-study2017Conference paper (Refereed)
  • 7.
    Anderzen-Carlsson, Agneta
    Örebro University, School of Health Sciences. Örebro University Hospital.
    Knowledge, skills and information needs on older residents’ hearing loss and hearing aids: Translation and adaptation of a Norwegian instrument2020Conference paper (Refereed)
  • 8.
    Anderzen-Carlsson, Agneta
    et al.
    Örebro University, School of Health Sciences. Örebro University Hospital.
    Almqvist, Kjerstin
    Källström, Åsa
    Örebro University, School of Law, Psychology and Social Work.
    Appell, Petra
    Gillå, Cristina
    Lind, Maria
    Lindgren Fändriks, Anna
    Child Health Care: A Place for Asking about Domestic Violence2018Conference paper (Other academic)
  • 9.
    Anderzen-Carlsson, Agneta
    et al.
    Örebro University, School of Health Sciences. Örebro University Hospital.
    Bergström, Mattias
    Mäkki-Torkko, Elina
    Carlsson, Per-Inge
    Örebro University, School of Medical Sciences.
    Bjuresäter, Kaisa
    Knowledge, skills and information needs on older residents’ hearing loss and hearing aids: Translation and adaptation of a Norwegian instrument2022Conference paper (Refereed)
    Abstract [en]

    Objective: The objective with the project is to find a valid and culturally appropriate instrument for measuring the professionals' knowledge, skills and information needs on older residents’ hearing loss and hearing aids. Such an instrument could optimally be used in clinical praxis, as well as in research, for cross-sectional studies and for measuring change related to educational interventions.

    Materials: The Norwegian instrument Knowledge, skills and information needs on residents’ hearing loss and hearing aids was identified in the literature. Its content was, by the research group regarded as relevant in a Swedish setting, although some cultural adaptations seemed to be necessary.

    Methods: The translation and cultural adaptations were performed in line with the International Society For Pharmacoeconomics and Outcomes Research (ISPOR) Task Force For Translation and Cultural Adapation, as outlined below:

    1. We first asked one of the original authors for permission to translate the instrument.

    2. Two of the authors (KB and MB) individually translated the content of the instrument. Their first language is Swedish, but both are familiar with the Norwegian language.

    3. The other authors individually and together checked the translations and judged whether the statements were comprehensible in Swedish, and made necessary cultural adaptations. For example, the nursing home settings, and job types within this sector are not identical in the two countries.

    4. An independent person, with knowledge of both Swedish and Norwegian (Norwegian being the first language), but with no previous knowledge of the instrument made a back-translation. This person had good knowledge of the setting, being a professor in geriatrics.

    5. The authors compared the original version of the instrument with the back-translated version and discussed some inconsistences with the first author of the original instrument, before we all agreed on a first preliminary Swedish version.

    6. 12 professionals having audiological competence, experience of nursing older people or teaching in nursing piloted the first preliminary Swedish version. They suggested some reformulations of questions and responses, which were discussed and decided on within the research group.

    7. The next step is to test the preliminary Swedish version of the instrument, which will take place during the winter of 2019-2020. A sample of professionals working in different nursing homes in two Swedish counties will be invited to participate. The plan is to include 400 professionals. The sample size is based on an optimal sample for performing a factor analysis as part of the assessment of the psychometric properties of the preliminary Swedish version. It also allows cross-sectional sub-analyses, based on different groups of professionals and level of nursing home.

    8. The project will be presented in a scientific journal, and used in a future intervention study. The instrument can also be used in clinical improvement work.

    Conclusion: The results are promising. To the best of our knowledge, there is no Swedish instrument available for measuring professionals' knowledge, skills and information needs on older residents’ hearing loss and hearing aids. It seems necessary to have such an instrument, as the number of older people increases in Sweden, as well as worldwide. Impaired hearing, as well as assistive needs increase with age, and thus it is of great importance to ensure that professionals working with older people have sufficient knowledge to assist them.

  • 10.
    Anderzen-Carlsson, Agneta
    et al.
    Örebro University, School of Health Sciences. Örebro University Hospital. University Health Care Research Center, Faculty of Medicine and Health, Örebro University, Örebro, Sweden; Faculty of Health, Science and Technology, Department of Health Sciences, Karlstad University, Karlstad, Sweden.
    Bäccman, Charlotte
    Faculty of Arts and Social Sciences, Department of Social and Psychological Studies, Karlstad University, Karlstad, Sweden; Faculty of Arts and Social Sciences, Center for Service Research, Karlstad University, Karlstad, Sweden.
    Almqvist, Kjerstin
    Faculty of Arts and Social Sciences, Department of Social and Psychological Studies, Karlstad University, Karlstad, Sweden.
    The professional relationship forms the base: Swedish child health care nurses' experiences of encountering mothers exposed to intimate partner violence2021In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 16, no 1, article id 1988043Article in journal (Refereed)
    Abstract [en]

    PURPOSE: This study aimed to explore child health care nurses' clinical experiences from encounters with mothers exposed to intimate partner violence (IPV), as little research has explored this topic.

    METHOD: Nine child health care nurses from two Swedish regions were interviewed. The interviews were analysed using thematic analysis.

    RESULTS: The narratives depicted the nurses' strong commitment to, and professional relationship with, the exposed mothers. The experience of working as a nurse and having encountered IPV in clinical practice made the nurses more confident, which impacted their performance and attitude towards this topic. The ability to uphold the professional relationship was threatened by lack of support and interprofessional collaborations.

    CONCLUSIONS: The professional relationship was central to the encounters, yet could impose an emotional burden on the nurses. While the nurses wanted to improve their knowledge of the process around the mother and child, they were happy to pass the primary responsibility over to other professionals. The findings highlight the challenge in establishing sustainable support for nurses, and building a transparent collaboration process between the health care sector and the social services, serving the well-being and safety of the mother and child.

  • 11.
    Anderzen-Carlsson, Agneta
    et al.
    Örebro University, School of Health Sciences. University Health Care Research Center, Region Örebro County, Örebro, Sweden; Faculty of Health, Science, and Technology, Department of Health Sciences, Nursing, Karlstad University, Karlstad, Sweden.
    Gillå, Cristina
    Central Child Health Unit, County Council of Varmland, Karlstad, Sweden.
    Lind, Maria
    Central Child Health Unit, Örebro County Region, Örebro, Sweden.
    Almqvist, Kjerstin
    Department of Social and Psychological studies, Karlstad University, Karlstad, Sweden.
    Fändriks, Anna Lindgren
    Central Child Health Unit, County Council of Varmland, Karlstad, Sweden.
    Källström, Åsa
    Örebro University, School of Law, Psychology and Social Work.
    Child healthcare nurses' experiences of asking new mothers about intimate partner violence2018In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 27, no 13-14, p. 2752-2762Article in journal (Refereed)
    Abstract [en]

    Aims and objectives: The aim of this study was to investigate child health care nurses' experiences of asking mothers of 8-month-old children about intimate partner violence using a two-step questionnaire.

    Background: Exposure to intimate partner violence is detrimental to women and to their children, and its early detection is vital. Child health care is a promising setting for detecting intimate partner violence.

    Design: The overall project had a quasi-experimental design, and was employed in 2015 at 12 child health care centers in Sweden. The project aimed to test a two-step method for talking about intimate partner violence with mothers (n = 198) at the child health care center. In this paper we disclose the experiences of the intervention from the perspective of the nurses (n = 13) who were educated and involved in the intervention.

    Methods: Data were collected by semi-structured interviews, analyzed by thematic analysis.

    Results: Five categories emerged: Using the two-step questionnaire method, Asking about IPV as an important issue, Being comfortable in the professional role and with asking about IPV, The importance of time and place in asking about IPV, and Spill-over effects.

    Conclusions: Asking mothers visiting the child health clinic about their experiences of intimate partner violence was seen as an important task. Using a questionnaire could facilitate asking, but the questionnaire must be short and easy to use. Furthermore, the time and place for initiating a talk about this sensitive topic must be carefully chosen.

    Relevance to clinical practice: The Violence in Families questionnaire was regarded as a useful tool and could thus be implemented in practice. However, it is important to offer education to the nurses prior to implementing a routine of asking about intimate partner violence in the child healthcare setting.

  • 12.
    Anderzen-Carlsson, Agneta
    et al.
    Örebro University, School of Health Sciences. Örebro University Hospital.
    Huus, Karina
    Wahlqvist, Moa
    Örebro University, School of Health Sciences. Örebro University Hospital.
    Björk, Maria
    Health related quality of life, family climate and sense of coherence in family members in families where a parent has deafblindness2020Conference paper (Refereed)
  • 13.
    Anderzen-Carlsson, Agneta
    et al.
    Örebro University, School of Health Sciences. Örebro University Hospital.
    Huus, Karina
    Wahlqvist, Moa
    Örebro University, School of Health Sciences. Örebro University Hospital.
    Björk, Maria
    The experience of family life when one parent has deafblindness: the partner’s perspective2020Conference paper (Refereed)
  • 14. Anderzen-Carlsson, Agneta
    et al.
    Lamy, Zeny C.
    Tingvall, Maria
    School of Health and Medical Sciences, Örebro University, Örebro, Sweden.
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    The nursing contribution in facilitating health and well-being in parents and infants in neonatal skin-to-skin care2013Conference paper (Refereed)
    Abstract [en]

    Background: Qualitative research about parental experiences of skin-to-skin care (SSC) reveals that the provision of SSC is an important part of becoming a parent. It has, from the perspective of the parent been characterised as a restoring experience as well as an energy-draining activity.

    Aim: The aim of this presentation is to highlight some nursing contributions facilitating a successful SSC.

    Methods: From the results of a meta-study (1) including 24 qualitative papers from 7 countries, a number of energy-draining experiences were identified, related to factors that can be modified in order to achieve a more restoring and less energy-draining experience. Some of these factors will be discussed and nursing actions will be suggested in order to provide families with better support for SSC.

    Results: Nursing actions to support parents providing skin-to-skin care should focus on the following factors:

            - Surveiling a family friendly physical environment of the neonatal unit; provide space and privacy for families and reduce noise and “technology-stress” levels

            - Nurses should encourage and support parents to provide skin-to-skin care, without inflicting pressure or feelings of guilt.

            - Fathers need extra support to be confident in providing SSC.

            - The needs of the whole family, including siblings at home, should be taken into account.

    Conclusion: It is important for nurses to be aware that SSC can be experienced both as restorative and energy consuming and that nurses’ attitudes can influence the parental experience, and alongside with that the wellbeing of the infant. In order to apply a family centrered perspective nurses must evaluate interventions, such as SSC, from the perspective of the individual infant, as well as from the perspective of the family as a whole.

  • 15.
    Anderzen-Carlsson, Agneta
    et al.
    Örebro University, School of Health Sciences. Örebro University Hospital.
    Leibring, I.
    Karlstad University, Faculty of Health- Science and Technology- Department of Health Sciences- Nursing, Karlstad, Sweden.
    Fear and Coping During Treatment for Acute Lymphatic Leukemia - from the Perspective of Children 5-9 Years Old2018In: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 65, no Suppl.2, p. S598-S598Article in journal (Other academic)
    Abstract [en]

    Background/Objectives: The concept of fear can be defined as ”an unpleasant often strong emotion caused by expectation of danger”. It is reasonable to believe that fear and coping of fear, can vary during the course of treatment for ALL. The aim of the present study was to describe a longitudinal perspective on fear related to having ALL, based on children's perspective, as well as to describe the strategies these children use when experiencing fear.

    Design/Methods: The study has a longitudinal descriptive qualitative design. Three girls and 10 boys, initially aged 5-9 were interviewed once to three times during their treatment period (approximately two months after the diagnosis, after one year and at the end of the 2.5-year long treatment). In total, 35 interviews were conducted. Data were analyzed using a matrix-based qualitative analysis method.

    Results: The children described fear of being subjected to needles and related to having a feeding tube, removing adhesive tape and taking tablets, as well as fear related to the bodily changes caused by the ALL. Existential fears were most frequently mentioned at the end of treatment. The children wanted to participate i n their care. They used cognitive strategies, such as ”thinking the right way” and emotional strategies, such as crying out loud and kicking. The fears changed over time, but the fear of being subjected to needles remained for half of the children, but was less intense at the end of treatment. The strategies developed, and became more sophisticated over the treatment period.

    Conclusions: The fear changed throughout the course of treatment, and so did the strategies used. It is reasonable to believe that the need for support also vary, which i s a topic for future research.

  • 16.
    Anderzen-Carlsson, Agneta
    et al.
    Örebro University, School of Health Sciences. Örebro University Hospital. University Health Care Research Center.
    Leibring, Ingela
    Karlstad University, Faculty of Health, Science and Technology, Institution for Health, Karlstad, Sweden.
    CHILDREN'S NARRATIVES OF SUPPORT FROM PARENTS WHEN EXPERIENCING FEAR RELATED TO ACUTE LYMPHOBLASTIC LEUKEMIA2022In: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 69, no Suppl. 5, p. S528-S528, article id P067Article in journal (Other academic)
    Abstract [en]

    Background and Aims: Children diagnosed with Acute Lymphoblastic Leukemia (ALL) typically undergo intense treatment with frequent hospitalizations. Medical, as well as existential fears have been identified. It has also been found that children's coping strategies develop during their illness trajectory. The literature on what children with ALL find to be valuable support from parents when experiencing fear is sparse. Thus, the aim of this presentation is to describe what young children find to be important support from their parents when experiencing fear related to ALL.

    Methods: The study had a longitudinal descriptive qualitative design. Thirteen children (3 girls and 10 boys), initially 5-9 years old were interviewed once to three times during their treatment period (approximately 2 months after the diagnosis, after 1 year, and at end of treatment). Data were analyzed using a matrix-based qualitative analysis method.

    Results: The parents’ physical and emotional closeness was the most frequently reported support. It eased the children's medical and existential fears. The children also found it supportive when the parents facilitated for them to participate in their care and when the parents acted as their advocate. Other supportive measures were offering distraction, talking to the child about their fears, assisting the professionals in alleviating pain and fear, being playful and encouraging. Five children also appreciated when their parents restricted them, during medical procedures. The experiences of support varied between children and between different time points during treatment.

    Conclusions: Although being quite young, the children were able to describe what they found to be supportive when experiencing fear, or for preventing fear. The parental support had an impact on the child's emotional, social and physical wellbeing. Professionals should encourage parents to stay with their child, and offer support to the parents, so that they in turn can support their child.

  • 17.
    Anderzen-Carlsson, Agneta
    et al.
    Örebro University, School of Health Sciences. Örebro University Hospital.
    Leibring, Ingela
    Qualitative matrix based analysis: a useful alternative for analyzing longitudinal data of children’s experiences2020Conference paper (Refereed)
    Abstract [en]

    Background: Previously, researchers have pointed out the importance of giving voice to children’s experiences of health care, as well to follow these experiences over time.

    Objective: To describe experiences of fear in 5-9 year-old children, related to having Acute Lymphoblastic Leukemia (ALL).

    Method: 3 girls and 10 boys participated in one to three interviews during their treatment period. The interviews were performed approximately two months after diagnosis, after one year and at the end of treatment (after 2.5 years). The data comprised 35 interviews in total, with an average length of 35 minutes. To capture the longitudinal perspective, a qualitative matrix methodology was adopted. First, individual matrices for each child was developed, where all narratives about their fears during the entire treatment period were inserted. Next, a cross-case matrix was developed, where all text from all the individual case-matrices were compiled for each time point. The general idea of the matrices was to visualize data, thus enabling the researchers to easier identify common patterns, between cases and over time. In this step, common fears experienced by the children were identified, and finally, summary cross-case matrices were created. These were used to summarize how many children who had experienced various fears at the three time points, during treatment.

    Results: Fear of needles was the most commonly reported fear. This fear was most prominent and most often reported at the start of treatment. For >50% of the children this fear remained at the end of treatment. Fear related to the physical changes caused by the ALL or treatment, on the other hand increased during the treatment period.

    Conclusion: The qualitative matrix based methodology was found to be useful when analyzing qualitative longitudinal interview-data from children with ALL. The analysis was quite manifest, which suited the data derived from young children.

  • 18.
    Anderzén Carlsson, Agneta
    et al.
    Örebro University, School of Health Sciences. Örebro University Hospital. University Health Care Research Center.
    Leibring, Ingela
    Karlstad University, Faculty Of Health, Science And Technology, Institution For Health, Karlstad, Sweden.
    Children’s Narratives of Support From Professionals when Experiencing Fear Related to Acute Lymphoblastic Leukemia2020In: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 67, no S4, p. 120-120, article id 0255Article in journal (Refereed)
    Abstract [en]

    Children diagnosed with Acute Lymphoblastic Leukemia (ALL) typically face 2.5 years treatment, which initially is intense and includes frequent hospitalizations. Previous research has identified various fears during treatment: fear of getting needles, removal of adhesive tapes, having a feeding tube, taking tablets and the physical changes related to ALL itself, as well as to treatments. The children’s coping strategies develop during the course of illness. The literature on what children with ALL find to be supportive when experiencing fear is sparse. The aim of this presentation is thus to describe what children 5-9 years old find to be important support from professionals when experiencing fear related to ALL.

  • 19.
    Anderzén-Carlsson, Agneta
    Örebro University, School of Health and Medical Sciences.
    Aktuell forskare om barn med cancer, deras rädsla och sättet den hanteras på2008In: Barnbladet, ISSN 0349-1994, Vol. 33, no 2, p. 45-46Article in journal (Other (popular science, discussion, etc.))
  • 20.
    Anderzén-Carlsson, Agneta
    Örebro University, School of Health and Medical Sciences.
    Att hantera rädsla hos barn med cancer2008In: Onkologi i Sverige, ISSN 1653-1582, Vol. 4, no 6, p. 14-20Article in journal (Other (popular science, discussion, etc.))
  • 21.
    Anderzén-Carlsson, Agneta
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Örebro University Hospital. Audiological Research Centre, Region Örebro County, Örebro University Hospital, Örebro, Sweden; The Swedish Institute for Disability Research (SIDR), Örebro, Sweden.
    CHARGE syndrome: a five case study of the syndrome characteristics and health care consumption during the first year in life2015In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 30, no 1, p. 6-16Article in journal (Refereed)
    Abstract [en]

    CHARGE syndrome is characterized by impaired vision and hearing, as well as physical malformations. The aim of this study is to describe the characteristics of the malformations and the health care consumption during the first year, in a Swedish sample having CHARGE syndrome. Three of the five individuals fulfilled all the traditional criteria for a clinical diagnosis of CHARGE syndrome. All infants were hospitalized from 26 to 230. days, subjected to 10-34 different diagnostic procedures and prescribed 10-28 different medications during their first year. Coordinated and individually adapted care is urged, as these infants and their families are in of need multiple health care contacts.

  • 22.
    Anderzén-Carlsson, Agneta
    Örebro University, Department of Clinical Medicine.
    Children with cancer: focusing on their fear and on how their fear is handled2007Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Various fears in children with cancer have previously been identified as a result of studying e.g. symptom experiences, distress and uncertainty within this population. Studies of the meaning the children give to their fear, as well as the handling of their fear seem to be sparse, however. Also, fear has not been an exclusive focus in previous studies. Professionals in clinical practice have pointed to the need for such research, which has prompted the present research work. The overall aim of this thesis was therefore twofold; firstly, the aim was to elucidate fear in children and adolescents with cancer in order to gain an understanding from the perspective of adolescents and parents. Secondly, it was to elucidate parents’ and professionals’ handling of the fear. This in order to gain a deeper understanding of what performances and manners the children and adolescents can face when being fearful. A qualitative descriptive design was adopted in the five included studies. The methods used in the data analysis were phenomenological hermeneutical method (studies I–III) and qualitative content analysis (studies IV–V).

    In study I six adolescent girls, aged 14–16 years, with experiences of various cancer diagnoses, but now declared fit, were interviewed. The results reveal that they experience their fear as embodied, which in the comprehensive understanding of the results was interpreted as a threat to their personal self, their whole existence. Their fear was seen as a holistic intertwined experience, including fear related to the physical body and to the social self. Also, existential fear was described. Their described experience was interpreted as suffering.

    Studies II and III share the same data. Fifteen parents of children at various ages with various cancer diagnoses were interviewed in focus groups about their experience of their child’s fear. In study II the result reveals how the parents experienced and understood their child’s fear. The fear was described as a multidimensional phenomenon, which was not always easy to identify. It was contrasted to feelings of unease and to absence of fear. In the comprehensive understanding the fear was interpreted as a suffering, as that was regarded to be what was the common meaning in the narratives. The suffering was interpreted as an ethical demand to the parents to take action. In study III the parents described their actions, i.e. they described how they dealt with the fear. Their actions were described as acting in the best interests of the child, which included striving to make the child feel secure and experience wellbeing, up to a certain point. However, after this point the parents used their parental authority to maintain the child’s physical health rather than trying to prevent or relieve the child’s fear. In the comprehensive understanding the parents’ handling of their child’s fear was interpreted as revealing mercy and as being synonymous with meeting the ethical demand put on them.

    In study IV ten experienced nurses and physicians were individually interviewed about how they handled fear in children with cancer. The result reveals that the existential issues were dealt with within the relationship with the child, on a sliding scale between closeness and distance, and that the fear related to medical procedures occurred on a continuum between support and lack of support. The various actions involved, and the manner in which these actions were performed, was described.

    In the observational study (study V) eleven parents and their children as well as eleven health professionals participated. They were observed at children’s routine visits at the outpatient clinic. The aim was to study the interactions related to fear. The result reveals that when children were fearful they expressed this both verbally and non-verbally. The parents’ and professionals’ actions and interactions in these situations were found to be characterized by recognition of the fear or lack of attention to the fear.

    The findings can contribute to a broadened knowledge on fear in children and adolescents with cancer. Awareness and understanding of the meaning adolescents give to their fear, and furthermore, of the parents’ experience and understanding of their child’s fear can provide tools for interacting with these groups. The findings on how fear is dealt with by the ones children have claimed as important sources for support, can give insights into what the child may face when being fearful. These insights can form the basis for individual, as well as collegial, reflections on what is done when children face fear, how fear is handled on an everyday basis and why it is handled in this way. Such reflections could lead to an ethical awareness of handling fear in children with cancer.

    List of papers
    1. Embodied suffering: experiences of fear in adolescent girls with cancer
    Open this publication in new window or tab >>Embodied suffering: experiences of fear in adolescent girls with cancer
    2008 (English)In: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 12, no 2, p. 129-143Article in journal (Refereed) Published
    Abstract [en]

    Previously, fear in adolescents with cancer has been sparsely described from an emic perspective. The aim of this study was to illuminate fear in adolescents with personal experience of cancer. The participants were six adolescent girls between the age of 14 and 16 years who were no longer under active treatment for cancer but still went for regular check-ups. Open interviews were conducted. Data were analysed according to the phenomenological hermeneutic method. In the result one main theme was identified: `an embodied fear — a threat to the personal self'. This theme was built up by three separate but intertwined themes: `experiencing fear related to the physical body', `experiencing existential fear' and `experiencing fear related to the social self'. In the comprehensive understanding the fear was interpreted from youth cultural aspects as well as a holistic perspective. The importance of professionals taking the whole person and their situation into account when meeting the fear is underlined.

    Place, publisher, year, edition, pages
    London: Sage, 2008
    National Category
    Medical and Health Sciences Surgery Cancer and Oncology
    Research subject
    Oncology
    Identifiers
    urn:nbn:se:oru:diva-5377 (URN)10.1177/1367493508088550 (DOI)000207648000005 ()2-s2.0-50349084497 (Scopus ID)
    Available from: 2009-02-06 Created: 2009-02-06 Last updated: 2023-12-08Bibliographically approved
    2. Children's fear as experienced by the parents of children with cancer
    Open this publication in new window or tab >>Children's fear as experienced by the parents of children with cancer
    2007 (English)In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 22, no 3, p. 233-244Article in journal (Refereed) Published
    Abstract [en]

    It is known that children with cancer experience and express fear, but little is found in the literature about how the parents experience their child's fear. This study aimed to highlight the parents' lived experience and understanding of their child's fear. Focus group interviews with 15 parents were performed. Data were analyzed through a phenomenological hermeneutic method. Fear in children with cancer is described by the parents as a multidimensional phenomenon, which is somehow difficult to identify. It appears in contrast to the absence of fear. The comprehensive understanding of the results reveals that the parents experience their children's fear as both a suffering and an ethical demand for the parents to answer.

    Place, publisher, year, edition, pages
    Amsterdam: Elsevier, 2007
    Keywords
    Cancer, barn, rädsla, upplevelse
    National Category
    Pediatrics Other Social Sciences not elsewhere specified Nursing Medical and Health Sciences Social Sciences Interdisciplinary
    Research subject
    Nursing Science
    Identifiers
    urn:nbn:se:oru:diva-3979 (URN)10.1016/j.pedn.2007.03.003 (DOI)2-s2.0-34248530826 (Scopus ID)
    Available from: 2007-08-31 Created: 2007-08-31 Last updated: 2023-12-08Bibliographically approved
    3. Parental handling of fear in children with cancer: caring in the best interests of the child
    Open this publication in new window or tab >>Parental handling of fear in children with cancer: caring in the best interests of the child
    (English)Manuscript (Other academic)
    National Category
    Nursing
    Research subject
    Nursing Science
    Identifiers
    urn:nbn:se:oru:diva-2837 (URN)
    Available from: 2007-05-04 Created: 2007-05-04 Last updated: 2017-10-18Bibliographically approved
    4. How physicians and nurses handle fear in children with cancer
    Open this publication in new window or tab >>How physicians and nurses handle fear in children with cancer
    2007 (English)In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 22, no 1, p. 71-80Article in journal (Refereed) Published
    Abstract [en]

    Previous research on fear in children with cancer has often focused on interventions to alleviate fear related to medical procedures and less on how to meet the challenges related to existential fear. This study aimed to describe how experienced nurses and physicians handle fear in children with cancer. Ten nurses and physicians with more than 10 years of experience in child oncology from a university hospital in Sweden were interviewed, and a qualitative content analysis was performed on the data. Nurses' and physicians' handling of fear encompasses commitment and closeness and yet also a distancing from fear and its expressions

    National Category
    Social Sciences Interdisciplinary Nursing Other Social Sciences not elsewhere specified Medical and Health Sciences Pediatrics
    Research subject
    Nursing Science
    Identifiers
    urn:nbn:se:oru:diva-2838 (URN)10.1016/j.pedn.2006.05.010 (DOI)2-s2.0-33846211904 (Scopus ID)
    Available from: 2007-05-04 Created: 2007-05-04 Last updated: 2023-12-08Bibliographically approved
    5. Fear in children with cancer: observations at an outpatient visit
    Open this publication in new window or tab >>Fear in children with cancer: observations at an outpatient visit
    Show others...
    2008 (English)In: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 12, no 3, p. 191-208Article in journal (Refereed) Published
    Abstract [en]

    The aim of the study was to describe interactions within the family and between them and professionals on a routine visit at a paediatric oncology outpatient clinic where the visiting child was likely to be fearful. Observations were performed. Data were analysed by qualitative content analysis. The behaviours most frequently observed as expressing fear were being quiet, withdrawn or providing detailed descriptions of experiences. Within the theme `Recognition of the fear', an attentive attitude to the fear was traced; fear was confirmed and cooperation was seen. Although many efforts were made to meet the fear, this was not always successful. Within the theme `Lack of attention to the fear', the fear was not in focus due to parental worries and concerns about the child's health, and organizational disturbances. The results can serve as a basis for collegial reflections of how to handle fear in children with cancer.

    Place, publisher, year, edition, pages
    London: Sage, 2008
    National Category
    Nursing
    Research subject
    Nursing Science
    Identifiers
    urn:nbn:se:oru:diva-5375 (URN)10.1177/1367493508092519 (DOI)000207648100003 ()2-s2.0-55949135870 (Scopus ID)
    Available from: 2009-02-06 Created: 2009-02-06 Last updated: 2023-12-08Bibliographically approved
  • 23.
    Anderzén-Carlsson, Agneta
    Örebro University, Department of Health Sciences.
    Existentiella rädslor hos barn med cancer: föräldrars och vårdpersonals berättelser2007In: Omsorg: Nordisk tidsskrift for Palliativ Medisin, ISSN 0800-7489, Vol. 24, no 4, p. 33-39Article in journal (Other academic)
  • 24.
    Anderzén-Carlsson, Agneta
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Rädsla hos barn med cancer2013In: Palliativ vård: Begrepp och perspektiv i teori och praktik / [ed] Birgitta Andershed, Britt-Marie Ternestedt, Cecilia Håkansson, Lund: Studentlitteratur AB, 2013, p. 299-311Chapter in book (Other academic)
  • 25.
    Anderzén-Carlsson, Agneta
    et al.
    Örebro University Hospital, Örebro.
    Carlsson, P
    Örebro University Hospital, Örebro.
    Så sjuk av så lite1996Book (Other (popular science, discussion, etc.))
  • 26.
    Anderzén-Carlsson, Agneta
    et al.
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Örebro University Hospital. Centre for Health Care Sciences, Örebro University Hospital, Örebro, Sweden.
    Carvalho Lamy, Zeni
    Departamento de Saúde Pública, Universidade Federal do Maranhâo, Hospital Universitário, Sao Luis, Brazil.
    Tingvall, Maria
    Department of Obstetrics and Gynaecology, Örebro University Hospital, Örebro, Sweden.
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Örebro University Hospital. Centre for Health Care Sciences, Örebro University Hospital, Örebro, Sweden.
    Parental experiences of providing skin-to-skin care to their newborn infant: Part 2: A qualitative meta-synthesis2014In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 9, article id 24907Article, review/survey (Refereed)
    Abstract [en]

    Aim: To synthesize and interpret qualitative research findings focusing on parental experiences of skin-to-skin care (SSC) for newborn infants.

    Background: SSC induces many benefits for newborn infants and their parents. Three meta-analyses have been conducted on physiological outcomes, but no previous qualitative meta-synthesis on parental experiences of SSC has been identified.

    Design: The present meta-synthesis was guided by the methodology described by Paterson and co-workers.

    Data sources: Four databases were searched, without year or language limitations, up until December 2013. Manual searches were also performed. The searches and subsequent quality appraisal resulted in the inclusion of 29 original qualitative papers from 9 countries, reporting experiences from 401 mothers and 94 fathers.

    Review methods: The meta-synthesis entails a meta-data analysis, analysis of meta-method, and meta-theory in the included primary studies. Based on the three analyses, the meta-synthesis represents a new interpretation of a phenomenon. The results of the meta-data analysis have been presented as a qualitative systematic review in a separate paper.

    Results: When synthesizing and interpreting the findings from the included analyses, a theoretical model of Becoming a parent under unfamiliar circumstances emerged. Providing SSC seems to be a restorative as well as an energy-draining experience. A supportive environment has been described as facilitating the restorative experience, whereas obstacles in the environment seem to make the provision of SSC energy-draining for parents. When the process is experienced as positive, it facilitates the growth of parental self-esteem and makes the parents ready to assume full responsibility for their child.

    Conclusion: The results show that SSC can be interpreted not only as a family-including and important health care intervention but also in terms of actually becoming a parent. The process of becoming a parent in this specific situation is influenced by external factors in three different levels; family and friends, community, and society at large. The descriptions of providing SSC are similar to what has previously been described as the natural process of becoming a mother or a father.

  • 27.
    Anderzén-Carlsson, Agneta
    et al.
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Örebro University Hospital. Centre for Health Care Sciences, Örebro University Hospital, Örebro, Sweden.
    Carvalho Lamy, Zeny
    Departamento de Saúde Pública, Universidade Federal do Maranhâo, Hospital Universitário, Sao Luis MA, Brazil.
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Örebro University Hospital. Centre for Health Care Sciences, Örebro University Hospital, Örebro, Sweden.
    Parental experiences of providing skin-to-skin care to their newborn infant: Part 1: A qualitative systematic review2014In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 9, article id 24906Article, review/survey (Refereed)
    Abstract [en]

    Aim: To describe parental experiences of providing skin-to-skin care (SSC) to their newborn infants.

    Background: SSC care for newborn infants has been reported to have positive physiological and psychological benefits to the infants and their parents. No systematic review regarding parental experiences has been identified.

    Design: In this first part of a meta-study, the findings of a systematic literature review on parental experience of SSC care are presented.

    Data sources: Four databases were searched, without year or language limitations, up until December 2013. Manual searches were performed in reference lists and in a bibliography of the topic.

    Review methods: After a quality-appraisal process, data from the original articles were extracted and analysed using qualitative content analysis.

    Results: The systematic and manual searches led to the inclusion of 29 original qualitative papers from nine countries, reporting experiences from 401 mothers and 94 fathers. Two themes that characterized the provision of SSC emerged: a restoring experience and an energy-draining experience.

    Conclusion: This review has added scientific and systematic knowledge about parental experiences of providing SSC. Further research about fathers’ experiences is recommended.

  • 28. Anderzén-Carlsson, Agneta
    et al.
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Hud-mot-hudvård2013In: Familjecentrerad neonatalvård / [ed] Karin Jackson, Helena Wigert, Lund: Studentlitteratur AB, 2013, 1, p. 97-110Chapter in book (Other academic)
  • 29.
    Anderzén-Carlsson, Agneta
    et al.
    Örebro University, School of Health and Medical Sciences.
    Kihlgren, Annica
    Örebro University, School of Health and Medical Sciences.
    Sörlie, Venke
    Högskolan i Bodö.
    Embodied suffering: experiences of fear in adolescent girls with cancer2008In: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 12, no 2, p. 129-143Article in journal (Refereed)
    Abstract [en]

    Previously, fear in adolescents with cancer has been sparsely described from an emic perspective. The aim of this study was to illuminate fear in adolescents with personal experience of cancer. The participants were six adolescent girls between the age of 14 and 16 years who were no longer under active treatment for cancer but still went for regular check-ups. Open interviews were conducted. Data were analysed according to the phenomenological hermeneutic method. In the result one main theme was identified: `an embodied fear — a threat to the personal self'. This theme was built up by three separate but intertwined themes: `experiencing fear related to the physical body', `experiencing existential fear' and `experiencing fear related to the social self'. In the comprehensive understanding the fear was interpreted from youth cultural aspects as well as a holistic perspective. The importance of professionals taking the whole person and their situation into account when meeting the fear is underlined.

  • 30.
    Anderzén-Carlsson, Agneta
    et al.
    Örebro University, Department of Clinical Medicine.
    Kihlgren, Mona
    Skeppner, Gunnar
    Sörlie, Venke
    How physicians and nurses handle fear in children with cancer2007In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 22, no 1, p. 71-80Article in journal (Refereed)
    Abstract [en]

    Previous research on fear in children with cancer has often focused on interventions to alleviate fear related to medical procedures and less on how to meet the challenges related to existential fear. This study aimed to describe how experienced nurses and physicians handle fear in children with cancer. Ten nurses and physicians with more than 10 years of experience in child oncology from a university hospital in Sweden were interviewed, and a qualitative content analysis was performed on the data. Nurses' and physicians' handling of fear encompasses commitment and closeness and yet also a distancing from fear and its expressions

  • 31.
    Anderzén-Carlsson, Agneta
    et al.
    Örebro University, Department of Clinical Medicine. Örebro University Hospital, Örebro, Sweden.
    Kihlgren, Mona
    Örebro University Hospital, Örebro, Sweden.
    Svantesson, Mia
    Örebro University, Örebro, Sweden; Örebro University Hospital, Örebro, Sweden.
    Sorlie, Venke
    Örebro university Hospital, Örebro, Sweden; Dept Social Sci, Bodo Univ, Bodo, Norway.
    Parental handling of fear in children with cancer: caring in the best interests of the child2010In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 25, no 5, p. 317-326Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to gain a deeper understanding of how parents of children with cancer handle the fear in their children. Fifteen parents of 11 children participated in focus-group interviews. Data were analyzed by a phenomenological hermeneutical method. The results suggest that the parents' handling was equivalent with caring in the best interests of the child. This included striving for the security and well-being of the child up to a certain point where the parents instead used their authority to maintain the child's physical health rather than trying to prevent or relieve the child's fear.

  • 32.
    Anderzén-Carlsson, Agneta
    et al.
    Örebro University, Department of Clinical Medicine.
    Kihlgren, Mona
    Svantesson, Mia
    Örebro University, Department of Clinical Medicine.
    Sörlie, Venke
    Children's fear as experienced by the parents of children with cancer2007In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 22, no 3, p. 233-244Article in journal (Refereed)
    Abstract [en]

    It is known that children with cancer experience and express fear, but little is found in the literature about how the parents experience their child's fear. This study aimed to highlight the parents' lived experience and understanding of their child's fear. Focus group interviews with 15 parents were performed. Data were analyzed through a phenomenological hermeneutic method. Fear in children with cancer is described by the parents as a multidimensional phenomenon, which is somehow difficult to identify. It appears in contrast to the absence of fear. The comprehensive understanding of the results reveals that the parents experience their children's fear as both a suffering and an ethical demand for the parents to answer.

  • 33.
    Anderzén-Carlsson, Agneta
    et al.
    Örebro University, Department of Clinical Medicine.
    Kihlgren, Mona
    Svantesson, Mia
    Sörlie, Venke
    Parental handling of fear in children with cancer: caring in the best interests of the childManuscript (Other academic)
  • 34.
    Anderzén-Carlsson, Agneta
    et al.
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Örebro University Hospital. Centre for Health Care Sciences, Örebro University, Örebro, Sweden.
    Lundholm, Ulla Persson
    Nora Health Care Centre, Örebro County Council, Nora, Sweden.
    Kohn, Monica
    Nora Health Care Centre, Örebro County Council, Nora, Sweden.
    Westerdahl, Elisabeth
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Örebro University Hospital. Centre for Health Care Sciences, Örebro University, Örebro, Sweden.
    Medical yoga: another way of being in the world-A phenomenological study from the perspective of persons suffering from stress-related symptoms2014In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 9, article id 23033Article in journal (Refereed)
    Abstract [en]

    The prevalence of stress-related illness has grown in recent years. Many of these patients seek help in primary health care. Yoga can reduce stress and thus complements pharmacological therapy in medical practice. To our knowledge, no studies have investigated patients' experiences of yoga treatment in a primary health care setting or, specifically, the experiences of yoga when suffering from stress-related illness. Thus, the aim of the present study was to explore the meaning of participating in medical yoga as a complementary treatment for stress-related symptoms and diagnosis in a primary health care setting. This study has a descriptive phenomenological design and took place at a primary health care centre in Sweden during 2011. Five women and one man (43-51 years) participated. They were recruited from the intervention group (n = 18) in a randomized control trial, in which they had participated in a medical yoga group in addition to standard care for 12 weeks. Data were collected by means of qualitative interviews, and a phenomenological data analysis was conducted. The essential meaning of the medical yoga experience was that the medical yoga was not an endpoint of recovery but the start of a process towards an increased sense of wholeness. It was described as a way of alleviating suffering, and it provided the participants with a tool for dealing with their stress and current situation on a practical level. It led to greater self-awareness and self-esteem, which in turn had an implicit impact on their lifeworld. In phenomenological terms, this can be summarized as Another way of being in the world, encompassing a perception of deepened identity. From a philosophical perspective, due to using the body in a new way (yoga), the participants had learnt to see things differently, which enriched and recast their perception of themselves and their lives.

  • 35.
    Anderzén-Carlsson, Agneta
    et al.
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Centre for Health Care Sciences, Örebro University Hospital, Örebro, Sweden.
    Sörlie, Venke
    Lovisenberg Deaconal University College, Oslo, Norway.
    Kihlgren, Annica
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Dealing with fear: from the perspective of adolescent girls with cancer2012In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 16, no 3, p. 286-292Article in journal (Refereed)
    Abstract [en]

    Background: Previously fears in adolescents with cancer has been identified in relation to medical procedures, death, altered appearance and as having an overall influence on life, but to our knowledge young people's perspectives on dealing with fear have not been previously investigated.

    Purpose: To examine adolescents' perspectives on dealing with cancer related fear.

    Methods and sample: Six girls participated in qualitative interviews focussing on their fear and and how they dealt with it. Data were analysed by means of qualitative content analysis.

    Results: The results revealed two perspectives. First, the adolescents' own personal battle with fear. Second, they reported that they were not alone with their fear, as they shared it with significant others. An environment characterized by emotional presence helped them to deal with their fear, as well as prevented it from occurring.

    Conclusions: There is a need for staff and parents to be vigilant to the adolescents' need to feel cared for and allow them the opportunity to deal with their own fear, as at times they want to manage in their own way. Young patients have resources to cope with their fears and therefore should not be viewed as victims, but as young people with a great amount of competence, who benefit from a supportive environment.

  • 36.
    Anderzén-Carlsson, Agneta
    et al.
    Örebro University, School of Health and Medical Sciences.
    Sørlie, Venke
    Högskolan i Bodö.
    Gustafsson, Karin
    Olsson, Maria
    Kihlgren, Mona
    Fear in children with cancer: observations at an outpatient visit2008In: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 12, no 3, p. 191-208Article in journal (Refereed)
    Abstract [en]

    The aim of the study was to describe interactions within the family and between them and professionals on a routine visit at a paediatric oncology outpatient clinic where the visiting child was likely to be fearful. Observations were performed. Data were analysed by qualitative content analysis. The behaviours most frequently observed as expressing fear were being quiet, withdrawn or providing detailed descriptions of experiences. Within the theme `Recognition of the fear', an attentive attitude to the fear was traced; fear was confirmed and cooperation was seen. Although many efforts were made to meet the fear, this was not always successful. Within the theme `Lack of attention to the fear', the fear was not in focus due to parental worries and concerns about the child's health, and organizational disturbances. The results can serve as a basis for collegial reflections of how to handle fear in children with cancer.

  • 37.
    Arvidsson Lindvall, Mialinn
    et al.
    Örebro University, School of Health Sciences. University Health Care Research Centre, Region Örebro County, Örebro, Sweden.
    Anderzen-Carlsson, Agneta
    Örebro University, School of Health Sciences. Örebro University Hospital. University Health Care Research Centre, Region Örebro County, Örebro, Sweden; Faculty of Health, Science, and Technology, Department of Health Sciences, Nursing, Karlstad University, Karlstad, Sweden.
    Appelros, Peter
    Faculty of Health, Science, and Technology, Department of Health Sciences, Nursing, Karlstad University, Karlstad, Sweden.
    Forsberg, Anette
    Örebro University, School of Health Sciences. Örebro University Hospital. Department of Physiotherapy.
    Validity and test-retest reliability of the six-spot step test in persons after stroke2020In: Physiotherapy Theory and Practice, ISSN 0959-3985, E-ISSN 1532-5040, Vol. 36, no 1, p. 211-218Article in journal (Refereed)
    Abstract [en]

    BACKGROUND AND PURPOSE: After stroke, asymmetric weight distribution is common with decreased balance control in standing and walking. The six-spot step test (SSST) includes a 5-m walk during which one leg shoves wooden blocks out of circles marked on the floor, thus assessing the ability to take load on each leg. The aim of the present study was to investigate the convergent and discriminant validity and test-retest reliability of the SSST in persons with stroke.

    METHODS: Eighty-one participants were included. A cross-sectional study was performed, in which the SSST was conducted twice, 3-7 days apart. Validity was investigated using measures of dynamic balance and walking. Reliability was assessed using intraclass correlation coefficient, standard error of the measurement (SEM), and smallest real difference (SRD).

    RESULTS: The convergent validity was strong to moderate, and the test-retest reliability was good. The SEM% was 14.7%, and the SRD% was 40.8% based on the mean of four walks shoving twice with the paretic and twice with the non-paretic leg.

    CONCLUSION: Values on random measurement error were high affecting the use of the SSST for follow-up evaluations but the SSST can be a complementary measure of gait and balance.

  • 38.
    Arvidsson Lindvall, Mialinn
    et al.
    Örebro University, School of Health Sciences. Örebro University Hospital. University Health Care Research Center.
    Anderzen-Carlsson, Agneta
    Örebro University, School of Health Sciences. Örebro University Hospital. University Health Care Research Center.
    Forsberg, Anette
    Örebro University, School of Health Sciences. Örebro University Hospital. University Health Care Research Center.
    Basic Body Awareness Therapy for patients with stroke: Experiences among participating patients and physiotherapists2016In: Journal of Bodywork & Movement Therapies, ISSN 1360-8592, E-ISSN 1532-9283, Vol. 20, no 1, p. 83-89Article in journal (Refereed)
    Abstract [en]

    Background: After a stroke many patients have muscle weakness, spasticity and compromised sensation leading to decreased postural stability. Basic Body Awareness Therapy includes slow movements that challenge postural control.

    Aim: The aim was to describe experiences of 8 weeks of Basic Body Awareness Therapy from the perspective of both patients with stroke and physiotherapists.

    Method: This study had a qualitative design. Twenty-one patients and four physiotherapists were interviewed. The interviews were analysed using manifest and latent content analysis.

    Results: One overall theme emerged "Simple yet challenging" which was based on six categories: "Facing one's limitations", "Individualized movements", "A feeling of harmony", "Improved balance", "Integrated knowledge" and "Frustration and doubt". The patients described improvement in balance and stability, as well as increased wellbeing.

    Conclusion: The patients and physiotherapists related that Basic Body Awareness Therapy challenges balance but also provides an opportunity to reflect on the body.

  • 39.
    Arvidsson Lindvall, Mialinn
    et al.
    Örebro University, School of Health Sciences.
    Anderzén-Carlsson, Agneta
    Örebro University, School of Health Sciences. Örebro University Hospital. Karlstad University, Karlstad, Sweden.
    Appelros, Peter
    Department of University Health Care Research Centre, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.
    Forsberg, Anette
    Örebro University, School of Health Sciences. Örebro University Hospital.
    Validity and test-retest reliability of the Six-Spot Step Test in persons after strokeManuscript (preprint) (Other academic)
  • 40.
    Arvidsson Lindvall, Mialinn
    et al.
    Örebro University, School of Health Sciences. Örebro University Hospital.
    Appelros, Peter
    Örebro University, Faculty of Medicine and Health, Örebro, Sweden.
    Forsberg, Anette
    Örebro University, School of Health Sciences. Örebro University Hospital.
    Anderzen-Carlsson, Agneta
    Örebro University, School of Health Sciences. Örebro University Hospital.
    Experiences of living with balance limitations after first-ever stroke2023Conference paper (Refereed)
    Abstract [en]

    Background:  

    Stroke is the leading cause of serious, long-term disability among adults. Balance control after stroke may be affected due to motor impairment such as muscle weakness, spasticity and impaired sensory function and also cognitive deficits may affect balance control. The balance limitations affect walking and independence in activities of daily living. Having good balance has been described as an important factor in outdoor walking and for participation in exercises. Studies in which persons with stroke describe their experience of balance in everyday life are scarce.

    Purpose:  

    The aim of the present presentation is to describe experiences of living with balance limitations in everyday life after first-ever stroke.

    Methods:  

    Twenty persons initially agreed to participate; however, one person later declined further participation, thus giving a sample size of 19 participants (10 females and 9 men), aged between 42-92 years. The inclusion criteria were: having had a first-ever stroke and having self-reported impaired balance, unaffected speech, independence in toileting and dressing, and walking ability indoors and outdoors with or without a walking aid. A qualitative data collection through individual interviews was conducted. Data was analysed by means of an inductive content analysis covering both the manifest and the latent content of the transcribed interviews.

    Results:  

    The participants' experiences of balance and its influence in everyday life, are presented in two themes. The first theme “Feeling dizzy and unstable is a continuous challenge”, revolves around participants' descriptions of balance as a constant feeling of dizziness and unsteadiness. The second theme “Feeling trust and confidence despite dizziness and unsteadiness” is about perceived abilities and feelings of confidence about still being able to do things oneself, despite the dizziness and unsteadiness.

    Conclusion(s):  

    All participants experienced the balance limitations as a continuous challenge in everyday life, yet they also felt trust and confidence and experienced that they still managed their everyday life. In future research it would be of interest to establish which strategies can make persons with stroke feel in balance in relation to fear of falling.

    Implications:

    In physical therapy practice, the experiences of balance limitations after stroke from the person with stroke add valuable information to various assessments. By asking the person about their abilities and challenges in daily living, rehabilitation interventions can be more individualized and based on the person's actual condition and their wishes and needs.

  • 41.
    Arvidsson Lindvall, Mialinn
    et al.
    Örebro University, School of Health Sciences. Örebro University Hospital.
    Appelros, Peter
    University Health Care Research Center, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.
    Forsberg, Anette
    Örebro University, School of Health Sciences. Örebro University Hospital.
    Anderzen-Carlsson, Agneta
    Örebro University, School of Health Sciences. Örebro University Hospital.
    LIVING WITH BALANCE LIMITATIONS AFTER FIRST-EVER STROKE2020In: International Journal of Stroke, ISSN 1747-4930, E-ISSN 1747-4949, Vol. 15, no Suppl. 1, p. 257-257Article in journal (Other academic)
    Abstract [en]

    Background: Stroke is the leading cause of serious, long-term disability among adults. Balance can be limited after stroke and the limitations affect walking and independence in activities of daily living. Having good balance has been described as an important factor in outdoor walking and for participation in exercises. Studies in which persons with stroke describe their experience of balance in everyday life are scarce.

    Aim: To describe experiences of living with balance limitations after first-ever stroke.

    Methods: A qualitative design, comprising interviews with 19 persons with first-ever stroke, ten women and nine men, aged between 42–92 years. Inclusion criteria were: having had a first-ever stroke and self-reported impaired balance, unaffected speech, independence in toileting and dressing, and walking ability indoors and outdoors with or without a walking aid. Data was analysed by means of an inductive content analysis covering both the manifest and the latent content of the transcribed interviews.

    Results: The results are presented in two themes illustrating the latent content of the data. “Feeling dizzy and unstable is a continuous challenge” revolves around participants’ descriptions of balance as a constant feeling of dizziness and unsteadiness. “Feeling trust and confidence despite dizziness and unsteadiness” is about perceived abilities and feelings of confidence about still being able to do things oneself, despite the dizziness and unsteadiness.

    Conclusion: All participants experienced the balance limitations as a continuous challenge in everyday life, yet they also felt trust and confidence and experienced that they still managed their everyday life.

  • 42.
    Arvidsson Lindvall, Mialinn
    et al.
    Örebro University, School of Health Sciences. Örebro University Hospital. Department of University Health Care Research Center.
    Forsberg, Anette
    Örebro University, School of Health Sciences. Örebro University Hospital. Department of Physiotherapy.
    Appelros, Peter
    Department of University Health Care Research Center, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.
    Anderzen-Carlsson, Agneta
    Örebro University, School of Health Sciences. Örebro University Hospital. Department of University Health Care Research Center.
    "I can manage the challenge": a qualitative study describing experiences of living with balance limitations after first-ever stroke2021In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 16, no 1, article id 1857044Article in journal (Refereed)
    Abstract [en]

    Purpose: To describe experiences of living with balance limitations after first-ever stroke.

    Materials and methods: This study has a qualitative design, comprising interviews with 19 persons with first-ever stroke, ten women and nine men. Their mean age was 77 years and the mean time since stroke was 15 months. Stroke survivors who were able to walk outdoors with or without a walking aid and who were independent in toileting and dressing were invited to participate. Semi-structured individual interviews were performed. An inductive qualitative content analysis of the manifest and latent content was conducted.

    Results: The results are presented in two themes illustrating the latent content of the data, "Feeling dizzy and unstable is a continuous challenge" and "Feeling confidence despite dizziness and unsteadiness", and seven categories illustrating the manifest content: Limitations in daily life; Being emotionally affected; The need for physical support; Everything takes time; I can still manage; Feelings of acceptance; and Finding individual solutions.

    Conclusions: All participants experienced the balance limitations as a continuous challenge in their everyday life, yet they also felt confidence. They had to some degree adapted their activities and were able to manage their daily life. 

  • 43.
    Arvidsson Lindvall, Mialinn
    et al.
    Örebro University, School of Health Sciences.
    Forsberg, Anette
    Örebro University, School of Health Sciences. Örebro University Hospital.
    Appelros, Peter
    Department of University Health Care Research Centre, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.
    Anderzén-Carlsson, Agneta
    Örebro University, School of Health Sciences. Örebro University Hospital.
    "I can still manage": a mixed-method study of balance after strokeManuscript (preprint) (Other academic)
  • 44.
    Axelin, Anna
    et al.
    Department of Nursing Science, University of Turku, Turku, Finland; Department of Family Health Care Nursing, University of California, San Francisco CA, USA.
    Anderzén-Carlsson, Agneta
    Department of Nursing Science, University of Turku, Turku, Finland .
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Centre for Health Care Sciences, Region Örebro County, Örebro, Sweden.
    Pölkki, Tarja
    Institute of Health Sciences, University of Oulu, Oulu, Finland.
    Korhonen, Anne R.N.
    Department of Pediatrics, Oulu University Hospital, Oulu, Finland .
    Franck, Linda
    Department of Family Health Care Nursing, University of California, San Francisco CA, USA.
    Neonatal intensive care nurses' perceptions of parental participation in infant pain management: a comparative focus group study2015In: Journal of Perinatal & Neonatal Nursing, ISSN 0893-2190, E-ISSN 1550-5073, Vol. 29, no 4, p. 363-374Article in journal (Refereed)
    Abstract [en]

    This comparative focus group study explored nurses' experiences and perceptions regarding parental participation in infant pain management in the neonatal intensive care unit (NICU). A total of 87 nurses from 7 NICUs in Finland, Sweden, and the United States participated in focus-group interviews (n = 25). Data were analyzed using deductive and inductive thematic analysis. Nurses' experiences and perceptions varied considerably, from nurses being in control, to nurses sharing some control with parents, to nurse-parent collaboration in infant pain management. When nurses controlled pain management, parents were absent or passive. In these cases, the nurses believed this led to better pain control for infants and protected parents from emotional distress caused by infant pain. When nurses shared control with parents, they provided information and opportunities for participation. They believed parent participation was beneficial, even if it caused nurses or parents anxiety. When nurses collaborated with parents, they negotiated the optimal pain management approach for an individual infant. The collaborative approach was most evident for the nurses in the Swedish NICUs and somewhat evident in the NICUs in Finland and the United States. Further research is needed to address some nurses' perceptions and concerns and to facilitate greater consistency in the application of evidence-based best practices.

  • 45.
    Axelin, Anna
    et al.
    University of Turku, Turku, Finland.
    Anderzén-Carlsson, Agneta
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Pöllki, Tarja
    University of Oulu, Oulu, Finland.
    Korhonen, Anne
    Oulu University Hospital, Oulu, Finland.
    Franck, Linda S
    University of California, San Francisco, USA.
    NICU Nurses’ Perceptions of Parental Participation in Infant Pain Management: a Comparative Focus Group Study2015Conference paper (Refereed)
  • 46.
    Axelin, Anna
    et al.
    University of Turku, Turku, Finland.
    Franck, Linda S
    University of California, San Francisco, USA.
    Anderzén-Carlsson, Agneta
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Korhonen, Anne
    University of Oulo, Oulo, Finland.
    Pölkki, Tarja
    University of Oulo, Oulo, Finland.
    NICU Nurses’perceptions regarding parental involvement in infant pain management2013Conference paper (Refereed)
    Abstract [en]

    Nurses play a key but varied role in enabling (or impeding) parents’ access to information and support needed for parental participation, influenced by individual, institutional and regional factors. We know very little about parental involvement from the perspective of nurses. The aim of this study was to explore views of nurses in 3 countries regarding the role of parents in infant pain management.

    Methods: A qualitative semi-structured interview study involving NICU nurses was conducted in Finland (n=47), Sweden (n=14), and the US (n=26). The interviews were analyzed with a deductive framework of a range of potential parent roles in infant pain management: none, being informed, being present, providing comfort, an informant for NICU staff, an active decision maker, or advocate for infant (Franck et al. 2012).

    Results: In all three countries, the nurses described two common parental roles: being informed and providing comfort. Parents were rarely described as informants, active decision makers, or advocates in relation to infant pain management. A new role of ‘parent as assistant’ emerged as some nurses described how parents provided infant comfort while the nurses concentrated on the technical performance of the painful procedure. Interviews also revealed that parents were sometimes actively excluded from infant pain management because their presence made nurses anxious when performing painful procedures. In the Finnish and Swedish samples, collaborative relations with parents were    emphasized. The Swedish nurses highlighted the mutual dialogue between nurses and parents. In the US sample, some nurses reported that an active parent role in pain management was not necessary or desirable, since they considered good pain management to be the responsibility of nurses.

    Discussion and Conclusion: Nurses’ support for parental involvement in infant pain management varies considerably. In some cases, they actively oppose or prevent parental involvement. In other instances, they facilitate parental involvement and encourage partnerships in all aspects of pain management. The transition to a more family-centered approach to infant pain management requires further examination of areas of alignment and dissonance between nurses and parents’ values, needs, perceptions and roles in caring for infants at high risk for pain.

    Franck LS, Oulton K, Bruce E. Parental involvement in neonatal pain management: an empirical and conceptual update. J Nurs Scholarsh, 2012;44(1):45-54.

  • 47.
    Björk, Maria
    et al.
    CHILD research group, Swedish Institute for Disability Research (SIDR), Department of Nursing Science, School of Health and Welfare, Jönköping University, Jönköping, Sweden.
    Wahlqvist, Moa
    Örebro University, School of Health Sciences. Örebro University Hospital. Audiological Research Centre and SIDR, Faculty of Medicine and Health, Örebro University, Örebro, Sweden; The Swedish National Resource Centre for Deafblindness, Lund, Sweden.
    Huus, Karina
    CHILD research group, SIDR, Department of Nursing Science, School of Health and Welfare, Jönköping University, Jönköping, Sweden.
    Anderzen-Carlsson, Agneta
    Örebro University, School of Health Sciences. Örebro University Hospital. University Health Care Research Centre and SIDR.
    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.

  • 48.
    Carlsson, Eva
    et al.
    Örebro University, School of Health Sciences.
    Anderzén Carlsson, Agneta
    Örebro University, School of Health Sciences.
    Prenkert, Malin
    Örebro University, School of Health Sciences.
    Svantesson, Mia
    Örebro University, School of Health Sciences.
    Ways of understanding being a healthcare professional in the role of family member of a patient admitted to hospital: A phenomenographic study2016In: International Journal of Nursing Studies, ISSN 0020-7489, E-ISSN 1873-491X, Vol. 53, p. 50-60Article in journal (Refereed)
    Abstract [en]

    Healthcare professionals' experience of being family member of a patient can contribute to knowledge development and organizational learning in further ways than the experiences of general family members. However, there is little research on healthcare professionals' experience being on 'the other side of the bed'.

    Objective: To describe how healthcare professionals understand the role of being a healthcare professional and a family member of a patient admitted to hospital.

    Design: Qualitative with a phenomenographic approach.

    Setting: Three Swedish hospitals.

    Participants: All healthcare professionals in three hospitals were invited. Twenty-one volunteered for the study and 18 met the inclusion criteria; to have one year of professional experience and to have visited the family member in hospital daily during hospitalization. Family members in maternity or psychiatric care were excluded.

    Methods: Semi-structured interviews were used for data collection. Transcripts were analyzed with a phenomenographic method to describe variation and commonality in the ways of understanding the phenomenon under study.

    Results: Four dominant ways of understanding the phenomenon were identified; the informed bystander, the supervisor, the advocate and the carer. The four ways of understanding were hierarchically related with "The informed bystander" being least involved in the care of the family member and "The carer" more or less taking over the patient's care because of inappropriate, unsafe or omitted care. Common for all ways of understanding the phenomenon, except "The informed bystander", was the difficult balance between their loyalty toward the family member and their colleagues among the staff. "The informed bystander" and "The supervisor" are ways of understanding the phenomenon under study that, to our knowledge, has not been described before.

    Conclusions: This study describes how being a family member of a patient can be understood in four different ways when the family member is a healthcare professional. The findings show similarities to previous studies on general family members as well as nurse-family members of patients in critical care. The need for professional communication, support and coordination will be substantially different if the family member understands his/her role as an informed bystander compared to if they perceive themselves as a carer. The role conflict and ambivalence toward building relationships described are aspects that need further exploration, as does the experience of being forced to care for a family member. Our findings contribute with new knowledge developing patient- and family-centered care.

  • 49.
    Ehn, Mattias
    et al.
    Örebro University, School of Health Sciences. The Swedish Institute for Disability Research, Örebro University, Örebro, Sweden; Audiological research centre, University hospital, Örebro, Sweden.
    Anderzen-Carlsson, Agneta
    Örebro University, School of Health Sciences. Örebro University Hospital. The Swedish Institute for Disability Research, Örebro University, Örebro, Sweden; University Health Care Research Centre, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.
    Möller, Claes
    Örebro University, School of Medical Sciences. The Swedish Institute for Disability Research, Örebro University, Örebro, Sweden; Audiological research centre, University hospital, Örebro, Sweden.
    Wahlqvist, Moa
    Örebro University, School of Health Sciences. Örebro University Hospital. The Swedish Institute for Disability Research, Örebro University, Örebro, Sweden; Audiological research centre, University hospital, Faculty of Medicine and Health, Örebro University, Örebro, Sweden; The Swedish National Resource Centre for Deafblindness, Lund, Sweden .
    Life strategies of people with deafblindness due to Usher syndrome type 2a-a qualitative study2019In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 14, no 1, article id 1656790Article in journal (Refereed)
    Abstract [en]

    Purpose: To explore life strategies in people with Usher syndrome type 2a.

    Background: There are no studies on life strategies in people with Usher syndrome. People with deafblindness are often described in terms of poor health and low quality of life, or as being vulnerable. From a clinical point of view, it is of importance to balance this picture, with an increased knowledge of life strategies.

    Methods: The study had a qualitative explorative design. Fourteen people aged 20-64 years (4 women, 10 men) with USH2a in Sweden participated in focus group interviews, which were transcribed and analysed by qualitative content analysis.

    Results: The content analysis resulted in seven categories; remaining active, using devices, using support, sharing knowledge, appreciating the present, maintaining a positive image and alleviating emotional pain. Two sub-themes: resolve or prevent challenges and comforting oneself was abstracted forming a theme "being at the helm".

    Conclusion: The findings show that people with USH2a have a variety of life strategies that can be interpreted as highlighting different aspects of psychological flexibility in a life adjustment process. The study demonstrates that people with USH2a manage in many ways, and metaphorically, by "taking the helm", they strive to actively navigate towards their own chosen values.

  • 50.
    Ehn, Mattias
    et al.
    Audiological Research Center, Örebro University hospital, Örebro, Sweden.
    Möller, Claes
    Audiological Research Center, Örebro University hospital, Örebro, Sweden.
    Wahlqvist, Moa
    Örebro University, School of Health Sciences. Örebro University Hospital. Audiological Research Center, Örebro University hospital; Swedish National Resource Center for Deafblindness, Sweden.
    Anderzen-Carlsson, Agneta
    Audiological Research Center, Örebro University hospital, Örebro, Sweden.
    Life Strategies And Facilitating Factors When Having Deafblindness Due To Usher Syndrome Type 2a2019In: Deafblind International World Conference: Abstract summaries for Concurrent presentations August 12-16, 2019, 2019Conference paper (Refereed)
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