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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 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.

  • 3.
    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.

  • 4.
    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.

  • 5.
    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)
  • 6.
    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)
  • 7.
    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.

  • 8.
    Anderzen-Carlsson, Agneta
    et al.
    Örebro University Hospital.
    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.

  • 9.
    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.

  • 10.
    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.))
  • 11.
    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.))
  • 12.
    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.

  • 13.
    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)
    Available from: 2009-02-06 Created: 2009-02-06 Last updated: 2017-12-14Bibliographically 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.pedn2007.03.003 (DOI)
    Available from: 2007-08-31 Created: 2007-08-31 Last updated: 2018-01-13Bibliographically 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)
    Available from: 2007-05-04 Created: 2007-05-04 Last updated: 2018-01-13Bibliographically 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)
    Available from: 2009-02-06 Created: 2009-02-06 Last updated: 2017-12-14Bibliographically approved
  • 14.
    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)
  • 15.
    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)
  • 16.
    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.))
  • 17.
    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.

  • 18.
    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 in journal (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.

  • 19. 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)
  • 20.
    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.

  • 21.
    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

  • 22.
    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.

  • 23.
    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.

  • 24.
    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)
  • 25.
    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.

  • 26.
    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.

  • 27.
    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.

  • 28.
    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.
    Validity and test-retest reliability of the six-spot step test in persons after stroke2018In: Physiotherapy Theory and Practice, ISSN 0959-3985, E-ISSN 1532-5040Article 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.

  • 29.
    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.

  • 30.
    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)
  • 31.
    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)
  • 32.
    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.

  • 33.
    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)
  • 34.
    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.

  • 35.
    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.

  • 36.
    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. 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.

  • 37.
    Eriksson, Mats
    et al.
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Lamy, Zeni C
    Tingall, Maria
    Anderzén-Carlsson, Agneta
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Becoming a parent under unfamiliar circumstances: restorative and energy-draining experiences of skin-to-skin care2015Conference paper (Refereed)
    Abstract [en]

    Aim: The aim was to synthesize and interpret findings from the body of research on parental experiences of SSC.

    Methods: Four databases were searched, without language limitations, up until December 2013. Manual searches were also performed. After a quality-appraisal process, data from the original articles were extracted. The meta-study comprised a meta-analysis, using qualitative content analysis, and subsequently an analysis of meta-method, and meta-theory, and finally the meta-synthesis.

    Results: 29 original qualitative papers from 9 countries, reporting experiences from 401 mothers and 94 fathers were included. 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.

  • 38.
    Funk, Eva
    et al.
    Örebro University, School of Health Sciences.
    Anderzen-Carlsson, Agneta
    Örebro University, School of Health Sciences. Örebro University Hospital.
    Thunberg, Per
    Örebro University, School of Medical Sciences. Örebro University Hospital.
    Patient participation in MRI: patient experiences and image quality addressing breath-hold acquisitions2016In: ECR 2016 Book of Abstracts: B. Scientific Sessions and Clinical Trials in Radiology, Springer, 2016, p. S379-S379Conference paper (Other academic)
    Abstract [en]

    Purpose: To investigate two different breath-hold techniques, in terms of patient experience and image quality, and describe patients' experiences of magnetic resonance imaging.

    Methods and Materials: Thirty patients referred for an MRI of the liver conducted two separate breath-hold acquisitions in a randomised order, radiographer-directed and patient-initiated. Semi-structured interviews were held and analysed, and images were reviewed according to image quality.

    Results: The patients' general experiences of the MRI were that they felt a loss of control, and almost half of the patients seemed to prefer the self-initiated breath-hold. About 20 % of the patients preferred to hand over the responsibility to the radiographer, and for some the technique did not matter.The patients empathized in general the importance of achieving the best image quality. There were no significant differences identified between the two breath-hold techniques, in regards to image quality.

    Conclusion: The results show that self-initiated breath-hold acquisitions can be seen as a new alternative worth considering in clinical MRI since it is appreciated by the patients and give similar image quality compared to conventional breath-hold acquisitions. It also offers a possibility to achieve some control over the situation.

  • 39.
    Funk, Eva
    et al.
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Anderzén-Carlsson, Agneta
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Örebro University Hospital.
    Ingverud, Per
    Department of Diagnostic Radiology, Örebro University Hospital, Örebro, Sweden.
    Leander, Anna
    Department of Diagnostic Radiology, Örebro University Hospital, Örebro, Sweden.
    Thunberg, Per
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Örebro University Hospital.
    Patient-initiated breath-holds in MRI: an alternative for reducing respiratory artifacts and improving image quality2015In: Clinical imaging, ISSN 0899-7071, E-ISSN 1873-4499, Vol. 39, no 4, p. 619-622Article in journal (Refereed)
    Abstract [en]

    Purpose: To investigate MRI image quality using two different breath-hold techniques.

    Materials and methods: Thirty patients remitted for MRI, 2D-dual gradient echo acquisition of the liver conducted two separate breath-hold acquisitions in randomized order, operator-instructed and patient-initiated. The images were reviewed by two radiologists.

    Results: There were no significant differences in image quality between the two breath-hold techniques either in overall image quality or respiratory motion artifacts. This assessment was equal and concordant for both radiologists.

    Conclusion: In terms of image quality, the patient self-initiated breath-hold was shown to be an equal alternative to conventional breath-hold imaging.

  • 40.
    Funk, Eva
    et al.
    Örebro University, School of Health Sciences.
    Thunberg, Per
    Örebro University, School of Medical Sciences. Örebro University Hospital.
    Anderzen-Carlsson, Agneta
    Örebro University, School of Health Sciences. Örebro University Hospital.
    Instructed or patient-initiated breath holds: what do the patients prefer?2013Conference paper (Other academic)
  • 41.
    Funk, Eva
    et al.
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Thunberg, Per
    Örebro University Hospital. Department of Medical Physics, Örebro University Hospital, Örebro, Sweden.
    Anderzen-Carlsson, Agneta
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Örebro University Hospital. Centre for Health Care Sciences, Örebro University Hospital, Örebro, Sweden.
    Patients' experiences in magnetic resonance imaging (MRI) and their experiences of breath holding techniques2014In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 70, no 8, p. 1880-1890Article in journal (Refereed)
    Abstract [en]

    Aims: To describe patients' experiences of magnetic resonance examination of the liver and their experiences of two breath-hold techniques.

    Background: Traditionally, patients are instructed by the radiographer to hold their breath during the examination. Alternatively, the patient can initiate the breath hold and start the image acquisition. Studies have revealed that magnetic resonance examinations can be experienced as challenging.

    Design: Descriptive qualitative.

    Methods: Semi-structured interviews were conducted with 28 patients and analysed using qualitative content analysis. The data collection was carried out from autumn 2010 to spring 2011.

    Results: The patients' main experience was that they felt loss of control. This was described in terms of feeling trapped, being lost in time and lost as a result of uncertainty. They had many questions in their mind that they did not ask. Although their statements often revealed no clear preference regarding the techniques, almost half of the patients seemed to prefer self-initiated breath hold, as it was easier and less stressful. Those who preferred the radiographer-directed technique felt more confident leaving the responsibility to the radiographer. In general, the patients understood the importance of achieving the best quality images possible.

    Conclusion: Magnetic resonance examination can be experienced as being in loss of control. Nevertheless, not all patients wished to actively participate in magnetic resonance examination. Some preferred to hand over the responsibility to the radiographer. These results can form a base for radiographers' reflections of how to individualize and optimize the nursing care of patients undergoing magnetic resonance examinations.

  • 42.
    Gillå, Cristina
    et al.
    Landstiget Värmland, Karlstad, sverige.
    Lind, Maria
    Region Örebro län, Örebro, Sverige.
    Lindgren Fändriks, Anna
    Landstinget Värmland, Karlstad, Sverige.
    Källström, Åsa
    Örebro University, School of Law, Psychology and Social Work.
    Anderzen-Carlsson, Agneta
    Örebro University, School of Health Sciences. Örebro University Hospital.
    Almqvist, Kjerstin
    Karlstad University, Karlstad, Sweden.
    Att inom Barnhälsovården i Landstinget Värmland och Region Örebro län fråga om våld i nära relationer2018Report (Other academic)
  • 43.
    Granrud, Marie Dahlen
    et al.
    Faculty of Social and Health Sciences, Inland Norway University of Applied Sciences, Elverum, Norway; Faculty of Health, Science and Technology, Department of Health Science, 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 Science, Karlstad University, Karlstad, Sweden.
    Bisholt, Birgitta
    Faculty of Health, Science and Technology, Department of Health Science, Karlstad University, Karlstad, Sweden.
    Steffenak, Anne Kjersti Myhrene
    Faculty of Social and Health Sciences, Inland Norway University of Applied Sciences, Elverum, Norway.
    Public Health Nurses' perceptions of interprofessional collaboration related to adolescents' mental health problems in secondary schools: a phenomenographic study2019In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 28, no 15-16, p. 2899-2910Article in journal (Refereed)
    Abstract [en]

    AIMS AND OBJECTIVES: To describe the variation in public health nurses' perceptions of interprofessional collaboration related to adolescents' mental health problems in secondary schools in Norway.

    BACKGROUND: Mental health problems among adolescents account for a large portion of the global burden of disease and affect 10-20% of adolescents worldwide. Public health nurses in school health services play an important role in disease prevention and promotion of physical and mental health. In order to serve adolescents with regard to mental health problems, public health nurses are dependent on collaboration with other professionals in schools.

    DESIGN: Qualitative interviews were conducted with 18 public health nurses working in the school health services.

    METHOD: A phenomenographic approach was used for interviewing and for analysing the qualitative interviews. This study is presented in line with COREQ's checklist.

    RESULT: The analysis resulted in three descriptive categories based on eight identified conceptions. The categories are: 'The formal structure has an impact on interprofessional collaboration'; 'The public health nurse is an important, but not always self-evident, partner in interprofessional collaboration'; and 'The primary players are the teachers in collaboration'.

    CONCLUSION: The public health nurses describe that they had limited impact on collaboration and were dependent on both the school principal and the teachers for achieving good collaboration. Teachers have the power to decide whether to collaborate with the public health nurse, and public health nurses regard teachers as the most important collaborative partners. The public health nurses need to make themselves and their competence visible.

    RELEVANCE TO CLINICAL PRACTICE: The findings demonstrated that public health nurses are important collaborators, but are not always included in interprofessional collaboration. This knowledge is essential to strengthen public health nurses' roles and presence in schools, which could most certainly benefit adolescents with mental health problems in secondary school. This article is protected by copyright. All rights reserved.

  • 44.
    Granrud, Marie Dahlen
    et al.
    Faculty of Social and Health Sciences, Department of Health Studies, Inland Norway University of Applied Science, Elverum, Norway; Faculty of Health, Science and Technology, Department of Health Science, Karlstad University, Karlstad, Sweden.
    Theander, Kersti
    County Council of Värmland, Centre for Clinical Research, Karlstad, Sweden.
    Anderzen-Carlsson, Agneta
    Örebro University, School of Health Sciences. Örebro University Hospital. Faculty of Health, Science and Technology, Department of Health Science, Karlstad University, Karlstad, Sweden; Faculty of Medicine and Health, University Health Care Research Center, Örebro University, Örebro, Sweden.
    Steffenak, Anne Kjersti Myhrene
    Faculty of Social and Health Sciences, Department of Health Studies, Inland Norway University of Applied Science, Elverum, Norway.
    Experiences of interprofessional collaboration in a special school programme for adolescents who struggle with school life: an explorative study2019In: Journal of Interprofessional Care, ISSN 1356-1820, E-ISSN 1469-9567, p. 1-8Article in journal (Refereed)
    Abstract [en]

    A growing proportion of adolescents struggle with school life and could benefit from special school programmes. School could be an arena for supporting such adolescents and, to meet these challenges, interprofessional collaboration (IPC) has been recommended for better health. The aim of the present study was to explore the experience of IPC in a special school programme offered to adolescents who struggle with school life - from the perspective of the professionals involved. Focus group interviews were carried out with four groups and fourteen participants, and the focus groups included two to five participants each. The focus group interviews were analysed using qualitative content analysis. The analyses from this study resulted in a main theme: IPC in the special school programme is unpredictable. Five categories emerged from the data, including: variations in initiative, significance of individual characteristics, informal and formal contact, lack of criteria and goals, and different obligations. The participants described IPC as differing from case to case, with a lack of criteria and goals for adolescents in the special school programme. They experienced the random nature of whoever took the initiative to collaborate, and that confidentiality and the different documentation requirements could affect IPC.

  • 45.
    Hagvall, Monica
    et al.
    Department of Paediatric Care, Örebro University Hospital, Örebro, Sweden; School of Health and Medical Sciences, Örebro University, Örebro, Sweden.
    Ehnfors, Margareta
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Anderzén-Carlsson, Agneta
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Örebro University Hospital. Centre for Health Care Sciences, Region Örebro County, Örebro, Sweden.
    Experiences of parenting a child with medical complexity in need of acute hospital care2016In: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 20, no 1, p. 68-76Article in journal (Refereed)
    Abstract [en]

    Parents of children with medical complexity have described being responsible for providing advanced care for the child. When the child is acutely ill, they must rely on the health-care services during short or long periods of hospitalization. The purpose of this study was to describe parental experiences of caring for their child with medical complexity during hospitalization for acute deterioration, specifically focussing on parental needs and their experiences of the attitudes of staff. Data were gathered through individual interviews and analyzed using qualitative content analysis. The care period can be interpreted as a balancing act between acting as a caregiver and being in need of care. The parents needed skilled staff who could relieve them of medical responsibility, but they wanted to be involved in the care and in the decisions taken. They needed support, including relief, in order to meet their own needs and to be able to take care of their children. It was important that the child was treated with respect in order for the parent to trust the staff. An approach where staff view parents and children as a single unit, as recipients of care, would probably make the situation easier for these parents and children.

  • 46.
    Hua, Håkan
    et al.
    Linnaeus Centre HEAD, Swedish Institute for Disability Research, Linköping University, Linköping, Sweden; Department of Behavioural Sciences and Learning, Linköping University, Linköping, Sweden.
    Anderzén-Carlsson, Agneta
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Linnaeus Centre HEAD, Swedish Institute for Disability Research, Linköping University, Linköping, Sweden; Audiological Research Centre, Örebro University Hospital, Örebro, Sweden.
    Widén, Stephen
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Linnaeus Centre HEAD, Swedish Institute for Disability Research, Linköping University, Linköping, Sweden.
    Möller, Claes
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Linnaeus Centre HEAD, Swedish Institute for Disability Research, Linköping University, Linköping, Sweden; Audiological Research Centre, Örebro University Hospital, Örebro, Sweden.
    Lyxell, Björn
    Linnaeus Centre HEAD, Swedish Institute for Disability Research, Linköping University, Linköping, Sweden; Department of Behavioural Sciences and Learning, Linköping University, Linköping, Sweden.
    Conceptions of working life among employees with mild-moderate aided hearing impairment: A phenomenographic study2015In: International Journal of Audiology, ISSN 1499-2027, E-ISSN 1708-8186, Vol. 54, no 11, p. 874-880Article in journal (Refereed)
    Abstract [en]

    Objectives: The aim was to explore the conceptions of working life among employees with mild-moderate aided hearing impairment (HI).

    Design: This study has a descriptive design, in which data was collected by means of semi-structured interviews. All interviews were audio-recorded and transcribed verbatim. The text was analysed in accordance with the phenomenographic approach.

    Study sample: Fifteen participants with mild-moderate aided HI were recruited to the current study.

    Results: The analysis of the interviews resulted in four main categories describing the participants’ conceptions of working life: (1) diffiiculties in daily work, (2) communication strategies, (3) facilitating factors in work environment, and (4) impact on daily life. The four identified descriptive categories show that the effects of HI on the lives of working adults generate far-reaching psychosocial consequences for the individual.

    Conclusions: This study demonstrates that difficulties and impact of having a HI interact with strategies used by the individual and contextual facilitators made in the work environment. We argue that there is a need for extensive services in aural rehabilitation for this population. This includes identifying the need of assistive listening devices, teaching the individual with HI about communication strategies and informing stakeholders about the consequence of having a HI.

  • 47.
    Hylén, Ulrika
    et al.
    Örebro University, School of Medical Sciences. University Health Care Research Center.
    Engström, Ingemar
    Örebro University, School of Medical Sciences. University Health Care Research Center.
    Engström, Karin
    School of Culture and Education, Södertörn University, Stockholm, Sweden.
    Pelto-Piri, Veikko
    Örebro University, School of Medical 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.
    Providing Good Care in the Shadow of Violence: An Interview Study with Nursing Staff and Ward Managers in Psychiatric Inpatient Care in Sweden2019In: Issues in Mental Health Nursing, ISSN 0161-2840, E-ISSN 1096-4673, Vol. 40, no 2, p. 148-157Article in journal (Refereed)
    Abstract [en]

    The aim was to describe the nursing staff and ward managers' experiences of safety and violence in everyday meetings with the patients. The qualitative content analyses resulted in four themes: the relationship with the patient is the basis of care; the organizational culture affects the care given; knowledge and competence are important for safe care; and the importance of balancing influence and coercion in care. The staff had a varied ability to meet patients in a respectful way. One way of creating a common approach could be to discuss and reflect upon different options in the meeting with the patient.

  • 48.
    Johansson, Anita
    et al.
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Div Psychiat, Skaraborg Hosp, Skövde, Sweden.
    Andershed, Birgitta
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Enheten för forskning i palliativ vård, Ersta Sköndal högskola, Stockholm, Sweden; Ersta Hosp, Stockholm, Sweden; Sektionen för sykepleie, Högskolen, Gjövik, Norge.
    Anderzen-Carlsson, Agneta
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Örebro University Hospital.
    Conceptions of mental health care: from the perspective of parents’ of adult children suffering from mental illness2014In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 28, no 3, p. 496-504Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to describe parents' conceptions of the mental health care provided to adult children suffering from mental illness. Data were collected using qualitative research interviews with a purposive sample of sixteen mothers and ten fathers. Phenomenographic analysis was used to identify conceptions and formulate descriptive categories. The first category, questioning the availability of care, describes mental health care as being unequal in terms of accessibility and lacking in continuity. The second category, disapproval of parental exclusion, illustrates conceptions that mental healthcare professionals disregard parents and do not provide them with adequate information. The third category, questioning the quality of care, encompasses conceptions of lack of trust in the professionals' competence, an unsatisfactory environment as well as inadequate cooperation with other healthcare providers and authorities. Positive aspects, such as being seen and confirmed, were mentioned as valuable by the parents.

  • 49.
    Johansson, Anita
    et al.
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Andershed, Birgitta
    Enheten för forskning i palliativ vård, Ersta Sköndal högskola, Stockholm, Sverige; Sektionen för sykepleie, Högskolen i Gjövik, Gjövik, Norge.
    Anderzen-Carlsson, Agneta
    Vårdvetenskapligt forskningscentrum, Örebro Läns Landsting, Örebro, Sverige.
    Åhlin, Arne
    Margretelunds Ungdomshem, Statens Institutionsstyrelse (National Board of Institutional Care), Lidköping, Sverige.
    Mothers' Everyday Experiences of Having an Adult Child Who Suffers from Long-Term Mental Illness2010In: Issues in Mental Health Nursing, ISSN 0161-2840, E-ISSN 1096-4673, Vol. 31, no 11, p. 692-699Article in journal (Refereed)
    Abstract [en]

    This paper aims to describe everyday life experiences of mothers who have an adult child with a long-term mental illness. Sixteen mothers were interviewed. A content analysis resulted in one main theme: My adult child who is struggling with mental illness is always on my mind, and three subthemes: (1) living a life under constant strain, (2) living with an emotional burden, and (3) seeing light in the darkness despite difficulties. Knowledge of mothers’ everyday life experiences is of great importance in order to support them and thereby increase the possibility of these mothers being a source of strength for their child.

  • 50.
    Johansson, Anita
    et al.
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Division of Psychiatry, Skaraborg Hospital, Skövde, Sweden.
    Anderzen-Carlsson, Agneta
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Vårdvetenskapligt forskningscentrum, Örebro Läns Landsting, Örebro, Sweden.
    Åhlin, Arne
    Margretelunds Ungdomshem, Statens Institutionsstyrelse (National Board of Institutional Care), Lidköping, Sweden.
    Andershed, Birgitta
    Department of Nursing, NTNU (Norges teknisk-naturvetenskapliga universitet), Gjøvik, Norway; Ersta Sköndal University College, Stockholm, Sweden.
    Fathers’ everyday experiences of having an adult child who suffers from long-term mental illness2012In: Issues in Mental Health Nursing, ISSN 0161-2840, E-ISSN 1096-4673, Vol. 3, no 2, p. 109-117Article in journal (Refereed)
    Abstract [en]

    The purpose of this study is to describe the everyday life experiences of fathers of adult children who have various forms of long-term mental illness. Ten fathers were interviewed. Content analysis revealed one main theme: Maintaining a strong façade while balancing on a thin line, and two sub-themes: (1) A constant struggle and (2) A feeling of powerlessness. The fathers demonstrated great engagement and good will to participate in their child's life. A sense of powerlessness and frustration at not having or being allowed freedom of action emerged. Cooperation between children, parents, the care service providers, and the authorities could increase the parents’ abilities to provide adequate support to the child as well as helping them to understand and make the incomprehensible manageable.

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