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  • 1.
    Darcy, Laura
    et al.
    Jönköping University, Sweden;University of Borås, Sweden.
    Björk, Maria
    Jönköping University, Sweden;University of Skövde, Sweden.
    Enskär, Karin
    Jönköping University, Sweden.
    Knutsson, Susanne
    Jönköping University, Sweden;University of Borås, Sweden.
    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.

  • 2.
    Darcy, Laura
    et al.
    Jönköping University, Sweden;University of Borås, Sweden.
    Björk, Maria
    Jönköping University, Sweden;University of Skövde, Sweden.
    Knutsson, Susanne
    Jönköping University, Sweden;University of Borås, Sweden.
    Granlund, Mats
    Jönköping University, Sweden.
    Enskär, Karin
    Jönköping University, Sweden.
    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.

  • 3.
    Darcy, Laura
    et al.
    Jönköping University, Sweden.
    Knutsson, Susanne
    University of Borås, Sweden.
    Huus, Karina
    Jönköping University, Sweden.
    Enskär, Karin
    Jönköping University, Sweden.
    The everyday life of the young child shortly after receiving a cancer diagnosis, from both children's and parent's perspectives2014In: 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.

  • 4.
    Enskär, Karin
    et al.
    Jönköping University, Sweden.
    Björk, Maria
    Jönköping University, Sweden.
    Knutsson, Susanne
    Jönköping University, Sweden;University of Borås, Sweden.
    Granlund, Mats
    Jönköping University, Sweden.
    Darcy, Laura
    Jönköping University, Sweden;University of Borås, Sweden.
    Huus, Karina
    Jönköping University, Sweden.
    A Swedish perspective on nursing and psychosocial research in paediatric oncology: A literature review2015In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 19, no 3, p. 310-317Article, review/survey (Refereed)
    Abstract [en]

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

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

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

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

  • 5.
    Enskär, Karin
    et al.
    Jönköping University, Sweden.
    Huus, Karina
    Jönköping University, Sweden.
    Björk, Maria
    Jönköping University, Sweden;University of Skövde, Sweden.
    Granlund, Mats
    Jönköping University, Sweden.
    Darcy, Laura
    Jönköping University, Sweden;University of Borås, Sweden.
    Knutsson, Susanne
    Jönköping University, Sweden;University of Borås, Sweden.
    An analytic review of clinical implications from nursing and psychosocial research within Swedish pediatric oncology2015In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 30, no 4, p. 550-559Article in journal (Refereed)
    Abstract [en]

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

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

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

  • 7.
    Golsäter, Marie
    et al.
    Högskolan i Jönköping, HHJ, Avd. för omvårdnad.
    Enskär, Karin
    Högskolan i Jönköping, HHJ, Avd. för omvårdnad.
    Knutsson, Susanne
    Högskolan i Jönköping, HHJ, Avd. för omvårdnad.
    Contributing to making the school a safe place for the child: School nurses’ perceptions of their assignment when caring for children having parents with serious physical illness2017In: Nursing Open, E-ISSN 2054-1058, Vol. 4, no 4, p. 267-273Article in journal (Refereed)
    Abstract [en]

    Aim: To explore how school nurses perceive their assignment when caring for children having parents with serious physical illness.

    Design: An explorative inductive qualitative design.

    Method: The study is based on interviews with 16 school nurses. The interviews were subjected to qualitative content analysis.

    Results: The main category, “Contribute in making the school a safe place for the child”, reveals how the school nurses try to contribute to making the school a safe place for a child when his/her parent has a serious physical illness. They support children through individual support, as well as at an overall level in the school health team to make the school, as an organization, a safe place. Routines and collaboration to recognize the child when his/her parent has become ill is described as crucial to accomplishing this assignment

  • 8.
    Golsäter, Marie
    et al.
    Jönköping University, Sweden;Region Jönköping County, Sweden.
    Enskär, Karin
    Jönköping University, Sweden.
    Knutsson, Susanne
    Jönköping University, Sweden.
    Parents’ perceptions of how nurses care for children as relatives of an ill patient: Experiences from an oncological outpatient department2019In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 39, p. 35-40Article in journal (Refereed)
    Abstract [en]

    Purpose:

    Research has shown that a child's knowledge about what is happening to a parent when he/she has a cancer disease is crucial to the child's health and wellbeing. Therefore the purpose of this study was to explore parents’ perceptions of how nurses in clinical practice care for children as relatives when one parent in the family has a cancer disease.

    Method:

    A qualitative explorative design with interviews was used. Altogether 28 parents (17 patients and 11 partners) were interviewed. The transcripts from the interviews were subjected to qualitative content analysis.

    Results:

    The parents perceive that the nurses make efforts to support the child as well as them as parents, but feel that the care needs to be more tailored to the specific child and his/her situation. The children are initially invited, generally informed and seen by the nurses, but the parents perceive that they themselves need repeated support and advice over time to uphold their parental responsibility for caring for their children during the illness trajectory.

    Conclusion:

    The parents argue for the importance of receiving repeated advice and support for how to talk to their children about the disease and treatment. The parents describe how the nurses were helpful by asking after the children and explaining the value of their visiting the hospital.

  • 9.
    Golsäter, Marie
    et al.
    Jönköping University, Sweden;Region Jönköping County, Sweden.
    Henricson, Maria
    Jönköping University, Sweden.
    Enskär, Karin
    Jönköping University, Sweden.
    Knutsson, Susanne
    Jönköping University, Sweden.
    Are children as relatives our responsibility?: How nurses perceive their role in caring for children as relatives of seriously ill patients2016In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 25, p. 33-39Article in journal (Refereed)
    Abstract [en]

    Purpose: The purpose of this study was to elucidate how nurses perceive their role in caring for children as relatives to a parent with a serious physical illness.

    Method: A qualitative explorative design with focus group interviews was used. In total, 22 nurses working at one neurological, one haematological and two oncological wards were interviewed. The transcripts from the interviews were analysed in steps in accordance with inductive qualitative content analysis.

    Results: This study revealed six variations in how nurses perceived their role in the encounter with child relatives, ranging from being convinced that it is not their responsibility to being aware of the children's situation and working systematically to support them.

    Conclusion: Nurses should consider whether their patients have children who might be affected by their parent's illness. The nurses' self-confidence when meeting these children must be increased by education in order to strengthen their professional role. Furthermore, guidelines on how to encounter child relatives are required.

  • 10.
    Knutsson, Susanne
    et al.
    Jönköping University, Sweden.
    Enskär, Karin
    Jönköping University, Sweden.
    Andersson-Gäre, Boel
    Region Jönköping County, Sweden;Jönköping University, Sweden.
    Golsäter, Marie
    Jönköping University, Sweden;Region Jönköping County, Sweden.
    Children as relatives to a sick parent: Healthcare professionals’ approaches2017In: Nordic journal of nursing research, ISSN 2057-1585, E-ISSN 2057-1593, Vol. 37, no 2, p. 61-69Article in journal (Refereed)
    Abstract [en]

    An illness or injury sustained by a family member affects all family members. It is consequently important that a child’s need to be involved in a family member’s care is clearly recognized by healthcare professionals. The aim of this study was to describe healthcare professionals’ approaches to children as relatives of a parent being cared for in a clinical setting. A web-based study-specific questionnaire was sent and responded to by 1052 healthcare professionals in Sweden. Data were analysed using descriptive statistics and qualitative analysis. The results show that guidelines and routines are often lacking regarding involving children in the care of a parent. Compared to other areas, psychiatric units seem to have enacted routines and guidelines to a greater extent than other units. The results indicate that structured approaches based on an awareness of the children’s needs as well as a child-friendly environment are vital in family-focused care. These aspects need to be prioritized by managers in order to support children’s needs and promote health and wellbeing for the whole family.

  • 11.
    Knutsson, Susanne
    et al.
    Jönköping University, Sweden.
    Enskär, Karin
    Jönköping University, Sweden.
    Golsäter, Marie
    Jönköping University, Sweden;Jönköping Region, Sweden.
    Nurses' experiences of what constitutes the encounter with children visiting a sick parent at an adult ICU2017In: Intensive & Critical Care Nursing, ISSN 0964-3397, E-ISSN 1532-4036, Vol. 39, p. 9-17Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:

    Despite a cultural change in visitation policies for children (0-17 years) in the intensive care unit (ICU) to a more open approach, children are still restricted from visiting for various reasons. To overcome these obstacles, it is vital to determine what is needed while encountering a child.

    AIM:

    To elucidate nurses' experiences of what constitutes the encounter with children visiting a sick parent in an adult ICU.

    METHOD:

    An explorative inductive qualitative design was used, entailing focus group interviews with 23 nurses working at a general ICU. The interviews were analysed according to inductive content analysis.

    RESULTS:

    The findings show components that constitute the encounter with children as relatives at the ICU, as experienced by ICU nurses: nurses need to be engaged and motivated; parents need to be motivated; the child needs individual guidance; and a structured follow-up is needed. This reflects a child-focused encounter.

    CONCLUSIONS:

    Nurses need to adopt a holistic view, learn to see and care for the child individually, and be able to engage parents in supporting their children. To accomplish this the nurses need engagement and motivation, and must have knowledge about what constitutes a caring encounter, in order to achieve a caring child-focused encounter.

1 - 11 of 11
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