Change search
Refine search result
1 - 20 of 20
CiteExportLink to result list
Permanent link
Cite
Citation style
  • apa
  • harvard1
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Rows per page
  • 5
  • 10
  • 20
  • 50
  • 100
  • 250
Sort
  • Standard (Relevance)
  • Author A-Ö
  • Author Ö-A
  • Title A-Ö
  • Title Ö-A
  • Publication type A-Ö
  • Publication type Ö-A
  • Issued (Oldest first)
  • Issued (Newest first)
  • Created (Oldest first)
  • Created (Newest first)
  • Last updated (Oldest first)
  • Last updated (Newest first)
  • Disputation date (earliest first)
  • Disputation date (latest first)
  • Standard (Relevance)
  • Author A-Ö
  • Author Ö-A
  • Title A-Ö
  • Title Ö-A
  • Publication type A-Ö
  • Publication type Ö-A
  • Issued (Oldest first)
  • Issued (Newest first)
  • Created (Oldest first)
  • Created (Newest first)
  • Last updated (Oldest first)
  • Last updated (Newest first)
  • Disputation date (earliest first)
  • Disputation date (latest first)
Select
The maximal number of hits you can export is 250. When you want to export more records please use the Create feeds function.
  • 1. Björk, Maria
    et al.
    Darcy, Laura
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    Jenholt Nolbris, Margaretha
    Hedman Ahlström, Britt
    Att vara barn och möta sjukdom.2017In: Att möta familjer i vård och omsorg: / [ed] Eva Benzein, Lund: Studentlitteratur AB, 2017Chapter in book (Refereed)
  • 2.
    Darcy, Laura
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    Meeting the social needs of young children with cancer: – a transdisciplinary implementation of research results.2018Conference paper (Refereed)
    Abstract [en]

    Background

    Young children are increasingly surviving their cancer and their experiences of living with cancer are crucial to providing evidence based care. Their own experiences of everyday life with cancer were elicitated by interview shortly after diagnosis and six, 12, 18 and 36 months later (2011-2015). Qualitative analyses of the results described the child living with cancer over a three year period as a child apart, striving to live an everyday life. A strong sense of loneliness, isolation, feeling left out and feeling different persisted throughout the study. Emerging issues of survivorship, such as the child’s social needs, were revealed that need to be addressed as young children learn to live an everyday life with cancer and the effects of its treatment.

    Methods

    The present paper aims to describe the actions taken by the Child Life Specialist Department at a paediatric hospital in the West of Sweden based on these results.

    Results

    Child Life Specialists (CLS) play an integral role on the oncology team. Guidelines and working practise were developed to meet the child’s social needs. CLS are now present at visits made to preschool/schools together with the consultant oncology nurses and maintain contact with preschool/school personnel over time. Through brochures and meetings the CLS spreads information on the child’s social needs to surrounding municipalities and other CLS teams in Sweden.

     

    Conclusions

    The results of studies with young children with cancer need to be implemented and evaluated in clinical care. Traditionally, studies within nursing are disseminated to and implemented by nursing staff. The present study shows how other disciplines can be involved in the dissemination and implementation of nursing study results- with the child and the child’s needs as the guiding point.

  • 3.
    Darcy, Laura
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare. Högskolan i Jönköping, HHJ. CHILD.
    The everyday life of young children through their cancer trajectory2015Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The young child’s experiences of living with cancer are crucial to providing evidence based care. The overall aim of this thesis was to explore and describe experiences of health and functioning in the everyday life of young children with cancer, over a three year period from diagnosis, to provide insights and suggestions to improve evidence based care.

    The first and second papers in the series of four for this thesis used a qualitative content analysis to describe the child’s experiences shortly after diagnosis and six and 12 months later. The third paper used mixed methods to identify a comprehensive set of ICF-CY codes describing everyday health and functioning in the life of the young child with cancer. The fourth paper used the identified comprehensive set of ICF-CY codes to follow changes in everyday health and functioning over the study’s entire three year period from diagnosis.

    Entry into the health-illness transition was characterised by trauma and isolation. Health and functioning in everyday life was utterly changed and physical difficulties were at their peak. The passage through transition was characterised by an active striving on the part of the child to make a normal everyday life of the cancer experience. Difficulties affecting health and functioning in everyday life decreased and changed during the trajectory, though feelings of loneliness prevailed. A new period of stability in the child’s post treatment life was seen from two years after diagnosis and onwards, with (re)-entry to preschool/school and other social activities. However, an increase in difficulties with personal interactions with others and access to, and support from healthcare professionals was seen. Variances were seen within individual children’s’ trajectories.

    In summary it can be stated that the everyday life of young children with cancer changes over time and health care services are not always in phase with these changes. Young children living with cancer want to be participatory in their care and to have access to their parents as protectors.

    They need access to and ongoing contact with peers and preschool. Although physical difficulties in living an everyday life with cancer reduce over time, new difficulties emerge as the child post cancer treatment re-enters society. A structured follow-up throughout the cancer trajectory and not just during active treatment is necessary. A child-centered philosophy of care would guide the child towards attainment of health and well-being.

    Both the child’s own perspective and a child’s perspective as described by adults caring for them should be seen on a continuum, rather than as opposites. This view could help ensure that young children become visible and are listened to as valuable contributors to care planning. Knowledge of health-illness transition can be useful in illustrating everyday health and functioning through long term illness trajectories.

  • 4.
    Darcy, Laura
    et al.
    University of Borås, School of Health Science. University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    Björk, M
    Enkär, K
    Knutsson, Susanne
    University of Borås, School of Health Science.
    The process of striving for an ordinary, everyday life, in young children living with cancer, at six months and one year post diagnosis2014In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 18, no 6, p. 605-612Article in journal (Refereed)
    Abstract [en]

    Purpose Health care focus is shifting from solely looking at surviving cancer to elements of attention relating to living with it on a daily basis.The young child's experiences are crucial to providing evidence based care. The aim of this study was to explore the everyday life of young children as expressed by the child and parents at six months and one year post diagnosis. Methods Interviews were conducted with children and their parents connected to a paediatric oncology unit in Southern Sweden. A qualitative content analysis of interview data from two time points, six months and one year post diagnosis, was carried out. Results The process of living with cancer at six months and at one year post diagnosis revealed the child's striving for an ordinary, everyday life. Experiences over time of gaining control, making a normality of the illness and treatment and feeling lonely were described. Conclusion Nurses have a major role to play in the process of striving for a new normal in the world post-diagnosis, and provide essential roles by giving the young child information, making them participatory in their care and encouraging access to both parents and peers. Understanding this role and addressing these issues regularly can assist the young child in the transition to living with cancer. Longitudinal studies with young children are vital in capturing their experiences through the cancer trajectory and necessary to ensure quality care.

  • 5.
    Darcy, Laura
    et al.
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare. Högskolan i Jönköping, HHJ. CHILD.
    Björk, Maria
    Högskolan i Jönköping, HHJ, Avd. för omvårdnad.
    Granlund, Mats
    Högskolan i Jönköping, HHJ, Avd. för socialt arbete.
    Enskär, Karin
    Högskolan i Jönköping, HHJ, Avd. för omvårdnad.
    ICF applications in health care for children with cancer in Sweden2017In: An emerging approach for education and care: Implementing a worldwide classification of functioning and disability / [ed] S. Castro & O. Palikara, London: Routledge , 2017, p. 178-186Chapter in book (Refereed)
    Abstract [en]

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

  • 6.
    Darcy, Laura
    et al.
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare. Högskolan i Jönköping, HHJ. CHILD.
    Björk, Maria
    Högskolan i Jönköping, HHJ, Avd. för omvårdnad.
    Knutsson, Susanne
    Högskolan i Jönköping, HHJ, Avd. för omvårdnad.
    Granlund, Mats
    Högskolan i Jönköping, HHJ. CHILD.
    Enskär, Karin
    Högskolan i Jönköping, HHJ, Avd. för omvårdnad.
    Following young children's health and functioning in everyday life through their cancer trajectory2016In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 33, no 3, p. 173-189Article in journal (Refereed)
    Abstract [en]

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

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

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

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

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

  • 7.
    Darcy, Laura
    et al.
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    Björk, Maria
    Jönköping University.
    Person, Christina
    Jönköping University.
    Enskär, Karin
    Jönköping University.
    It’s not just about making them talk: Some thoughts and experiences on interviewing children in research2016In: Nordic Conference on Nursing Research 2016: Methods and Networks for the future, 2016Conference paper (Other academic)
    Abstract [en]

    It’s not just about making them talk - thoughts and experiences on interviewing children in research

    Historically, children’s views have not been valued in medical care.  In research, children have been seen as a vulnerable group, difficult to access and unable to tell their story. Many proxy studies have been performed where health care staff and parents have given their views about what they think the child experiences. However,it is difficult to draw valid conclusions about the child´s experience using proxy valuations. Children have the right and the ability to contribute unique information about their own experiences. These views are valuable in providing evidence based care.

    The aim of this paper is to share experiences and thoughts gained from interviewing children with cancer aged 3-13 years of age.

    Young children (from 3 years of age) have sufficient mental ability, cognition and concepts to describe experiences– just not in the same way as adults. They are able to articulate their experiences, providing the interview context feels safe, questions and props are developmentally appropriate and the interviewer follows the child’s leads. Special considerations need to be taken such as how to best inform them about the study, ethical issues, where and when to undertake the interview, how long the interview should be, how to make the child talk in the interview and which elucidating devices/props  can  be used during the interview as facilitators.  Parental contributions to child interviews can be useful as long as focus is kept on the child’s experiences. Interviewing over several time points gives new insights.

  • 8.
    Darcy, Laura
    et al.
    University of Borås, School of Health Science.
    Enkär, K
    Granlund, M
    Someonsson, R J
    Peterson, C
    Björk, M
    Health and functioning in the everyday lives of young children with cancer: documenting with the International Classification of Functioning, Disability & Health – Children & Youth (ICF-CY)2014In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 41, no 3, p. 475-482Article in journal (Refereed)
    Abstract [en]

    Background Health care focus is shifting for children from surviving childhood cancer to living with it on a daily basis. There is a need to document health and function in the everyday lives of young children with cancer using the multidimensional framework and language of the International Classification of Functioning, Disability and Health – Children and Youth (ICF-CY). Aims The aims of this study were (1) to document health and functioning in the everyday lives of young children with cancer using ICF-CY codes and (2) to identify a comprehensive code set that can aid clinical assessment. Method Interviews with children diagnosed with cancer and their parents, were transcribed, reviewed for content and coded to the ICF-CY using linking procedures. Results A comprehensive code set (n = 70) for childhood cancer was identified. The majority of content identified to codes was related to activity and participation describing social relations with family, peers and professionals, preschool attendance and play, as well as issues related to support and independence.

  • 9.
    Darcy, Laura
    et al.
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    Enskär, Karin
    Jönköping University.
    Björk, Maria
    Jönköping University.
    The everyday life of young children through their cancer trajectory2016In: The 48th congress of the international society of paediatric oncology: SIOP, 2016Conference paper (Other academic)
    Abstract [en]

    Background

    The young child’s experiences of living with cancer are crucial to providing evidence based care. The aim of this study was to explore and describe experiences of health and functioning in the everyday life of young children with cancer, over a three year period from diagnosis.

    Methods

    Children and parents were interviewed at four time points and questionnaire data collected at five time points over a three year period from diagnosis. A qualitative content analysis to describe the child’s experiences shortly after diagnosis and six and 12 months later. Mixed methods were used to identify a comprehensive set of ICF-CY codes describing everyday health and functioning in the life of the young child with cancer. These codes were then used to follow changes in everyday health and functioning over the study’s entire three year period from diagnosis.

    Results

    The everyday life of young children with cancer changes over time and health care services are not always in phase with these changes. Children living with cancer want to be participatory in their care and to have access to their parents as protectors. They need access to and ongoing contact with peers and preschool. Although physical difficulties in living an everyday life with cancer reduce over time, new difficulties emerge as the child post cancer treatment re-enters society.

    Conclusions

    The results of this study reveal emerging issues of survivorship that need to be addressed as young children learn to live an everyday life with cancer and the effects of its treatment. A structured follow-up throughout the cancer trajectory and not just during active treatment is necessary. A child-centered philosophy of care would guide the child towards attainment of health and wellbeing.

  • 10.
    Darcy, Laura
    et al.
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare. Faculty of Caring Science, Work Life and Social Welfare, University of Borås, Borås, Sweden.
    Enskär, Karin
    Högskolan i Jönköping, HHJ, Avd. för omvårdnad.
    Björk, Maria
    Högskolan i Jönköping, HHJ, Avd. för omvårdnad.
    Young children's experiences of living an everyday life with cancer – A three year interview study2018In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122Article in journal (Refereed)
    Abstract [en]

    Purpose

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

    Method

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

    Results

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

    Conclusions

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

  • 11.
    Darcy, Laura
    et al.
    University of Borås, School of Health Science.
    Enskär, Karin
    Granlind, Mats
    Simeonsson, Rune J
    Peterson, Christina
    Björk, Maria
    Health and functioning in the everyday lives of young children with cancer: documenting with the International Classification of Functioning, Disability and Health – Children and Youth (ICF-CY)2014In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214Article in journal (Refereed)
    Abstract [en]

    Background Health care focus is shifting for children from surviving childhood cancer to living with it on a daily basis. There is a need to document health and function in the everyday lives of young children with cancer using the multidimensional framework and language of the International Classification of Functioning, Disability and Health – Children and Youth (ICF-CY). Aims The aims of this study were (1) to document health and functioning in the everyday lives of young children with cancer using ICF-CY codes and (2) to identify a comprehensive code set that can aid clinical assessment. Method Interviews with children diagnosed with cancer and their parents, were transcribed, reviewed for content and coded to the ICF-CY using linking procedures. Results A comprehensive code set (n = 70) for childhood cancer was identified. The majority of content identified to codes was related to activity and participation describing social relations with family, peers and professionals, preschool attendance and play, as well as issues related to support and independence. Conclusions The ICF-CY can be used to document the nature and range of characteristics and consequences of cancer experienced by children. The identified comprehensive code set could be helpful to health care professionals, parents and teachers in assessing and supporting young children’s health and everyday life through the cancer trajectory. The comprehensive code set could be developed as a clinical assessment tool for those caring for young children with cancer. The universal language of the ICF-CY means that the utility of a clinical assessment tool based on identified codes can have wide reaching effects for the care of young children with cancer.

  • 12.
    Darcy, Laura
    et al.
    University of Borås, School of Health Science.
    Karlsson, Katarina
    University of Borås, School of Health Science.
    How do we best analyze the meaning of the child’s experience and not just the content?2011Conference paper (Other academic)
  • 13.
    Darcy, Laura
    et al.
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    Karlsson, Katarina
    Humanising Care for Sick Children in Hospital: – are we ready to meet the demands of The Convention on Human Rights of the Child (CHRC)?2018Conference paper (Refereed)
    Abstract [en]

    Background

    Nursing Care of children is complex and nurses need specific knowledge in meeting children to ensure high quality care. Caring for children based on their age, developmental stage and maturity can be a challenge for nurses and sets demands on care. When the CRC becomes law in Sweden 2020 children’s rights will be strengthened and we can expect repercussions in the quality of care delivered to children in need

     

    Aim

    The aim of this study was to investigate the degree to which nurses in paediatric hospital services work in compliance with the CRC.

     

    Method

    Nurses in paediatric services in Western Sweden answered a survey on if their work situation allowed them to give care to children in accordance with the CRC. Survey responses (n=69) were analysed with descriptive analysis. Personal interviews were performed with paediatric nurses (n=9) and analysed with a qualitative content analysis.

     

    Results

    Nurses working in paediatric services are well aware of children’s rights in health care and strive to meet children’s needs. However, a stressed working situation with lack of time and/or an environment that is not child friendly means that their caring is not always optimal. Children are not participatory to the degree nurses would wish then to be and the CRC stipulates they should.

     

    Conclusions

    Nurses working with children show competence in and knowledge of children’s needs. However thay are limited by their working environments. Clear guidelines and working tools such as time for reflection are suggestions of measures that need to be taken to ensure compliance with the upcoming demands of the CRC.

  • 14.
    Darcy, Laura
    et al.
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    Karlsson, Katarina
    Enskär, Karin
    CHILD, Jönköping University.
    The use of restraint with young children during painful medical procedures2016In: Nordic Conference in Nursing Research 2016: Methods and Networks for the future, 2016Conference paper (Other academic)
    Abstract [en]

    Children’s need for support is tied to their experiences of fear during times of trauma and uncertainty. Two recent studies gave insight to the experiences of young children (3-7 years of age) undergoing painful medical procedures. Children and parents described trauma related to the suddenly changed caring role parents’ play: from caring parent to health care assistant. Parents helped restrain children and took part in painful and unpleasant procedures and treatments. Nurses described the use of restraint as sometimes necessary due to logistical constraints but also as supportive to the child. Lack of access to parents as protectors was experienced as traumatic by the child. The child felt ashamed, humiliated and powerless, having lost the right to control his/her own body.

    The aim of this paper is to review the use of restraint with young children during painful medical procedures

    From the young child’s perspective, restraint is never supportive. Children require a sense of security to overcome fear. When the child seeks security in an adult, the adult’s response becomes extremely important. Children need to guide and be guided by adults, until they think: “I can manage this”. Adequate support enables a caring situation characterised by mutual trust. Parents ought to be involved to help alleviate fear, but strategies for collaboration and role definition for parents and health care professionals need to be reassessed.

  • 15.
    darcy, laura
    et al.
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    Karlsson, Katarina
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    Galvin, Kathleen
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    Humanising children's suffering during medical procedures2017In: European Conference in Nursing  and Nursing Research 2017, 2017, Vol. 16, p. 32-, article id suppl1Conference paper (Other academic)
    Abstract [en]

    Humanising children’s suffering during medical procedures

    Laura Darcy, Katarina Karlsson, Kate Galvin

    Background: The views of children have historically been seen as unimportant – they have been viewed as unintelligent and unable to tell of their experiences or participate in care, resulting in dehumanisation. Recent research has given young vulnerable children a voice and highlighted the importance of caring humanly for sick children (Darcy, 2015 & Karlsson, 2015). A conceptual framework consisting of eight dimensions of humanisation has been proposed by Todres, Galvin and Holloway (2009)which can highlight the need for young children to be cared for as human beings: Insiderness, Agency, Uniqueness, Togetherness, Meaning – making, Personal journey, Sense of Place and Embodiment. The aim of this study is to demonstrate the value of a humanising theoretical framework in paediatric care illustrated by examples of young children’s suffering when undergoing medical procedures.

    Materials and Methods: In two separate Swedish studies 20 children (3-7 years of age) with a variety of diagnosis were interviewed about their experiences of everyday life with cancer or their experiences of undergoing painful medical procedures. Parents and nurses views were welcomed as complimentary to child data. Interviews had been analysed qualitatively by either content analyses or by phenomenological and life world herme­neutic approaches. In the present study, a secondary inductive qualitative content analysis of the results has been made based on the proposed dimensions of humanisation/dehumanistion.

    Results: The eight dimensional framework Illustrated several forms of dehumanisation: Objectification –children’s opinions and experiences are seldom requested; Passivity – the use of restraint still happens and negatively affects the child; Homogenisation – children are viewed as their diagnosis; Isolation – children sense separation from parents, siblings and friends; Loss of meaning –appropriate information and preparation for the child is lacking; Loss of personal journey - everyday life functioning is affected making it difficult to see meaning; Dislocation – a sense of homelessness  is experienced at home, at the hospital and at preschool/school; Reductionist view – medical procedures becomes the professional focus of care, not the child.

    Conclusion: Dehumanisation occurs when humanising dimensions are obscured to a significant degree. Children’s own voices in care and research are required to correct the present power imbalance. Children require assistance in making sense of healthcare situations through play and preparation. Access to family and friends, being treated with dignity and encouragement to participate in care, will encourage humanising the dehumanisation illustrated in this study.

    References:

    Darcy, L. (2015). The everyday life of young children through their cancer trajectory. Jönköping: School of Health Sciences.

    Karlsson, K. (2015). ”I´m afraid, I want my mommy”: Younger children´s, parents’ and nurses´ lived experiences of needle procedures in health care. Jönköping: Jönköping University, School of Health and Welfare

    Todres, L., Galvin, K. T., & Holloway, I. (2009). The humanization of healthcare: A value framework for qualitative research. International Journal of Qualitative Studies on Health and Well-being, 4(2), 68-77.

  • 16.
    Darcy, Laura
    et al.
    University of Borås, School of Health Science.
    Knutsson, S
    Huus, K
    Enskar, K
    The everyday life of the young child shortly after receiving a cancer diagnosis2014In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 37, no 6, p. 445-456Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:: Providing qualified, evidence-based healthcare to children requires increased knowledge of how cancer affects the young child's life. There is a dearth of research focusing on the young child's experience of everyday life. OBJECTIVE:: The purpose of this study was to explore young children's and their parents' perceptions of how cancer affects the child's health and everyday life shortly after diagnosis. METHODS:: Thirteen children with newly diagnosed cancer aged 1 to 6 years and their parents, connected to a pediatric oncology unit in Southern Sweden, participated in this study through semistructured interviews. Child and parent data were analyzed as a family unit, using qualitative content analysis. RESULTS:: Everyday life was spent at hospital or at home waiting to go back to hospital. Analysis led to the following categories: feeling like a stranger, feeling powerless, and feeling isolated. CONCLUSIONS:: The child wants to be seen as a competent individual requiring information and participation in care. Parents need to be a safe haven for their child and not feel forced to legitimize painful and traumatic procedures by assisting with them. Nurses play a major role in the lives of children. Research with and on the young child is necessary and a way of making them visible and promoting their health and well-being. IMPLICATIONS FOR PRACTICE:: Nurses need to reevaluate the newly diagnosed child's care routines so as to shift focus from the illness to the child. This requires competent nurses, secure in their caring role.

  • 17.
    Enskär, Karin
    et al.
    Jönköping University.
    Björk, Maria
    Jönköping University.
    Knutsson, Susanne
    Jönköping University.
    Granlund, Mats
    Jönköping University.
    Darcy, Laura
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    Huus, Karina
    Jönköping University.
    A Swedish perspective on nursing and psychosocial research in paediatric oncology: A literature review.2015In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 19, no 3, p. 310-7, article id S1462-3889(14)00176-8Article in journal (Refereed)
    Abstract [en]

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

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

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

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

  • 18.
    Enskär, Karin
    et al.
    Högskolan i Jönköping, HHJ. CHILD.
    Huus, Karina
    Högskolan i Jönköping, HHJ. CHILD.
    Björk, Maria
    Högskolan i Jönköping, HHJ, Avd. för omvårdnad.
    Granlund, Mats
    Högskolan i Jönköping, HHJ, Avd. för socialt arbete.
    Darcy, Laura
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare. Institution of Health Science, University College of Borås, Borås, Sweden.
    Knutsson, Susanne
    Högskolan i Jönköping, HHJ, Avd. för omvårdnad.
    An analytic review of clinical implications from nursing and psychosocial research within Swedish pediatric oncology2015In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 30, no 4, p. 550-559Article in journal (Refereed)
  • 19.
    Karlsson, Katarina
    et al.
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    Darcy, Laura
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    Enskär, Karin
    CHILD, Jönköping University.
    Powerless and afriad: What using restaint means to young children with cancer during painful medical procedures2016In: 48th congress of the international society of paediatric oncology: SIOP, 2016Conference paper (Other academic)
    Abstract [en]

    Background

    Children’s need for support is tied to their experiences of fear during times of trauma and uncertainty. The aim of this paper was to review the use of restraint with young children with cancer, from the child’s perspective, during painful medical procedures.

    Method

    In two separate Swedish doctoral theses, 20 children (3-7 years of age) with a variety of cancer diagnosis were interviewed about their experiences of everyday life with cancer and experiences of undergoing painful medical procedures. Parents and nurses views were welcomed as complimentary to child data. Interviews were analysed qualitatively by content analyses and phenomenological and life world hermeneutic approaches.

    Result

    Children and parents described trauma related to the suddenly changed caring role parents’ play: from caring parent to health care assistant. Parents helped restrain children and took part in painful and unpleasant procedures and treatments. Nurses described the use of restraint as sometimes necessary due to logistical constraints but also as supportive to the child. Lack of access to parents as protectors was experienced as traumatic by the child. The child felt ashamed, humiliated and powerless, having lost the right to control his/her own body.

    Conclusion

    From the young child’s perspective, restraint is never supportive. Children require a sense of security to overcome fear. When the child seeks security in an adult, the adult’s response becomes extremely important. Children need be guide and be guided by adults, until they think: “I can manage this”. Adequate support enables a caring situation characterised by mutual trust. Parents ought to be involved to help alleviate fear, but strategies for collaboration and role definition for parents and health care professionals need to be reassessed.

  • 20.
    Karlsson, Katarina
    et al.
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    Darcy, Laura
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    Enskär, Karin
    CHILD, Jönköping University.
    The use of restraint when undergoing medical procedures is never supportive from the child’s perspective2016In: Nordic Society of pediatric oncology nurses 2016, 2016Conference paper (Other academic)
    Abstract [en]

    During times of trauma and uncertainty such as when undergoing medical procedures, children’s need for support is tied to their experiences of fear. Two recent Swedish PhD dissertations gave insight to the experiences of young children (3-7 years of age) with cancer.

    The aim of this paper was to review the use of restraint with young children with cancer during painful medical procedures, as described in several recent Swedish studies.

    Results showed that children felt ashamed, humiliated and powerless, having lost the right to control his/her own body. Nurses described the use of restraint as sometimes necessary due to logistical constraints but also as supportive to children. Parents helped restrain children and took part in painful and unpleasant procedures and treatments.  Lack of access to parents as protectors was experienced as traumatic by the child.

    Restraint is never supportive from the young child’s perspective. Children require a sense of security to overcome fear. When the child seeks security in an adult, the adult’s response becomes extremely important. Children need to guide and be guided by adults, until they think: “I can manage this”. Adequate support enables a caring situation characterised by mutual trust. Parents ought to be involved to help alleviate fear, but strategies for collaboration and role definition for parents and health care professionals need to be reassessed.

1 - 20 of 20
CiteExportLink to result list
Permanent link
Cite
Citation style
  • apa
  • harvard1
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf