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  • 1.
    Appelin, Gunilla
    et al.
    Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science.
    Brobäck, Gunilla
    Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science.
    Berterö, Carina
    Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science.
    A comprehensive picture of palliative care at home from the people involved.2005In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 9, no 4, p. 315-324Article in journal (Refereed)
  • 2.
    Backman, Malin
    et al.
    Department of Neurobiology, Care Science and Society, Division of Nursing, Karolinska Institutet, Stockholm, Sweden.
    Browall, Maria
    Högskolan i Skövde, Institutionen för hälsa och lärande.
    Sundberg, Carl Johan
    Department of Physiology & Pharmacology and Unit for Bioentrepreneurship, Karolinska Institutet, Sweden / Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Sweden.
    Wengström, Yvonne
    Department of Neurobiology, Care Science and Society, Division of Nursing, Karolinska Institutet, Stockholm, Sweden.
    Experiencing health - Physical activity during adjuvant chemotherapy treatment for women with breast cancer2016In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 21, p. 160-167Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The aim of this study was to explore how women with breast cancer experience physical activity (PA) during adjuvant chemotherapy treatment.

    METHODS: This study included sixteen women diagnosed with breast cancer who had participated in a supervised 16-week PA intervention during adjuvant chemotherapy treatment. The qualitative approach included semi-structured individual and focus group interviews. Data were analyzed inductively with content analysis.

    RESULT: The content analysis resulted in a description of experiencing health during chemotherapy treatment covered by five categories: Solidarity with others and being good to oneself; Experiencing functional improvement and social support; Empowerment and motivation to focus on health; Barriers to adherence to PA during illness and treatment; and Enabling health and independence. A core category was identified; PA a tool for maintenance and recovery of physical, mental and social health. The women reported that PA had a positive impact on both physical function and mental wellbeing. Participating in the PA intervention also increased their feeling of social support, which was reported to be important to motivate adherence to PA when the side effects became more severe. Symptom burden, time and lack of motivation were reported as barriers to continue PA during treatment.

    CONCLUSION: The women in this study reported that PA had a positive impact on their perceived health and that it was possible to exercise despite increasing symptom burden from treatment. PA was perceived as a tool that supported health processes and gave the women a feeling of getting respite from the illness.

  • 3.
    Björk, Maria
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Division of Nursing, Department of Health and Learning, University of Skövde, Sweden.
    Sundler, Annelie J.
    Division of Nursing, Department of Health and Learning, University of Skövde, Sweden.
    Hallström, Inger
    Department of Health Sciences, Faculty of Medicine, Lund University, Sweden.
    Hammarlund, Kina
    Division of Nursing, Department of Health and Learning, University of Skövde, Sweden.
    Like being covered in a wet and dark blanket – Parents' lived experiences of losing a child to cancer2016In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 25, p. 40-45Article in journal (Refereed)
    Abstract [en]

    Purpose The aim of this study was to illuminate parents' lived experiences of losing a child to cancer.

    Method Interviews and a narrative about parents' experiences of losing a child to cancer were gathered from six parents of children whom had participated in a longitudinal study across the child's illness trajectory. The analysis of the data was inspired by van Manen's hermeneutic phenomenological approach.

    Results One essential theme emerged: Like being covered in a wet and dark blanket, as well as six related themes: Feeling conflicting emotions, Preparing for the moment of death, Continuing parenting after death, Recollecting and sharing memories, Working through the sorrow and New perspectives in life.

    Conclusion There is a need for good palliative care. If not, there is a risk that the parent will perseverate and blame themselves for not being a good parent during the suffering child's last time in life. Meetings with the parents six months and two years after the child's death might facilitate healing through the grief process.

  • 4.
    Björklund, Margereth
    et al.
    Nordiska ministerrådet, Nordic School of Public Health NHV.
    Sarvimäki, Anneli
    Nordiska ministerrådet, Nordic School of Public Health NHV.
    Berg, Agneta
    Kristianstad University College, Kristianstad, Sweden.
    Health promotion and empowerment from the perspective of individuals living with head and neck cancer2008In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 12, no 1, p. 26-34Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to shed light on health promotion from the perspective of individuals living with head and neck cancer. Eight informants were interviewed and latent content analysis was used. Individuals living with head and neck cancer experienced many problems that had a negative impact on their health. One overarching main theme was demonstrated; the ability to regain control and empower oneself. Three themes emerged: (1) Being enabled by dialogue with one's inner self, including three sub-themes: transformed and improved self-esteem, recognising and embracing existentiality, and increased self-determination. (2) Being enabled by means of contact with a social network, including two sub-themes: emotional support and practical support. (3) Being enabled by means of contact with and a passion for the environment, including two sub-themes: nature, hobbies and activities. Empowerment, the goal of health promotion, was understood as an ongoing process, and the ability to promote health varied and was dependent on internal and external enabling of acting and doing. The interpretation of this ongoing process demonstrates interplay assisted by a dialogue with one's inner self, contact with a social network and a passion for the environment. Altogether, these findings may inspire nurses and other health care professionals to support the individual's empowerment process and pose non-pathology-oriented questions such as "what improves your health?" or "what makes you feel good?"

  • 5.
    Blomberg, Karin
    et al.
    Faculty of Medicine and Health, School of Health and Medical Sciences, Örebro University, Örebro, Sweden.
    Wengström, Yvonne
    Faculty of Medicine and Health, School of Health and Medical Sciences, Örebro University, Örebro, Sweden / Department NVS, Section for Nursing, Karolinska Institutet, Stockholm, Sweden.
    Sundberg, Kay
    Department NVS, Section for Nursing, Karolinska Institutet, Stockholm, Sweden.
    Browall, Maria
    Högskolan i Skövde, Institutionen för hälsa och lärande.
    Isaksson, Ann-Kristin
    Faculty of Medicine and Health, School of Health and Medical Sciences, Örebro University, Örebro, Sweden.
    Nyman, Maria Hälleberg
    Faculty of Medicine and Health, School of Health and Medical Sciences, Örebro University, Örebro, Sweden.
    Langius-Eklöf, Ann
    Department NVS, Section for Nursing, Karolinska Institutet, Stockholm, Sweden.
    Symptoms and self-care strategies during and six months after radiotherapy for prostate cancer - Scoping the perspectives of patients, professionals and literature2016In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 21, p. 139-145Article in journal (Refereed)
    Abstract [en]

    PURPOSE: Under-diagnosed and uncontrolled symptoms in patients with prostate cancer during radiotherapy can have a negative impact on the individual's quality of life. An opportunity for patients to report their symptoms systematically, communicate these symptoms to cancer nurses and to receive self-care advice via an application in an Information and Communication Technology-platform could overcome this risk. The content in the application must precisely capture symptoms that are significant to both patients and health care professionals. Therefore, the aim of the study was to map and describe symptoms and self-care strategies identified by patients with prostate cancer undergoing radiotherapy, by health care professionals caring for these patients, and in the literature.

    METHODS: The study combines data from interviews with patients (n = 8) and health care professionals (n = 10) and a scoping review of the literature (n = 26) focusing on the period during and up to 6 months after radiotherapy.

    RESULTS: There was a concordance between the patients, health care professionals, and the literature on symptoms during and after radiotherapy. Urinary symptoms, bowel problems, pain, sexual problems, fatigue, anxiety, depression, cognitive impairment and irregular symptoms were commonly described during the initial treatment period. Self-care strategies were rarely described in all three of the sources.

    CONCLUSIONS: The results show which symptoms to regularly assess using an Information and Communication Technology-platform for patients with newly-diagnosed prostate cancer during radiotherapy. The next step is to evaluate the efficacy of using the platform and the accuracy of the selected symptoms and self-care advice included in a smartphone application.

  • 6.
    Browall, Maria
    et al.
    The Sahlgrenska Academy at Göteborg University, Institute of Health and Care Sciences, Göteborg, Sweden / Department of Oncology, Division of Selected Clinical Specialties, Sahlgrenska University Hospital, Göteborg, Sweden.
    Ahlberg, Karin
    The Sahlgrenska Academy at Göteborg University, Institute of Health and Care Sciences, Göteborg, Sweden.
    Karlsson, Per
    The Sahlgrenska Academy at Göteborg University, Institute of Health and Care Sciences, Göteborg, Sweden / Department of Oncology, Southern Älvsborg Hospital, Borås, Sweden.
    Danielson, Ella
    The Sahlgrenska Academy at Göteborg University, Institute of Health and Care Sciences, Göteborg, Sweden / Department of Health Science, Mid Sweden University, Östersund, Sweden.
    Persson, Lars-Olof
    The Sahlgrenska Academy at Göteborg University, Institute of Health and Care Sciences, Göteborg, Sweden.
    Gaston-Johansson, Fannie
    School of Nursing, Johns Hopkins University, Baltimore, MD, USA.
    Health-related quality of life during adjuvant treatment for breast cancer among postmenopausal women2008In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 12, no 3, p. 180-189Article in journal (Refereed)
    Abstract [en]

    The purpose of the present study was twofold: first, to describe changes of Health-Related Quality of Life (HRQoL) during the adjuvant treatment among postmenopausal women with breast cancer; second, in the same population to identify the best predictors of Overall Quality of Life (QoL) after treatment, from perceived functioning, symptoms, emotional distress and clinical/demographic variables measured at baseline. The study group was 150 women (>= 55 years of age) scheduled for adjuvant chemotherapy (CT, n=75) or radiotherapy (RT, n=75). They were examined before (baseline), during and after completing the treatment. Data about QoL, perceived functioning, symptoms and emotional distress were collected with the European Organisation for Research and Treatment of Cancer (EORTC)-QLQ-C30, BR23 and Hospital Anxiety and Depression Scale (HADS) questionnaires. The general finding was that the adjuvant treatments were associated with decrease in overall QoL, physical and role functioning, anxiety and body image, as well as with increase in fatigue, dyspnoea, pain, nausea/vomiting, constipation and systemic therapy side effects measured over time. For women receiving CT, better emotional functioning and less pain at baseline predicted better overall QoL at the end of the treatment. For women receiving RT, better physical and emotional functioning, less breast symptoms and lower tumour stage at baseline predicted better overall QoL at the end of the treatment.

  • 7.
    Browall, Maria
    et al.
    Department of Oncology, Sahlgrenska University Hospital, Gothenburg 413 45, Sweden.
    Carlsson, Maria
    Department of Public Health and Caring Sciences, Döbelnsgatan 2, Uppsala 752 37, Sweden.
    Horvath, György
    Department of Oncology, Sahlgrenska University Hospital, Gothenburg 413 45, Sweden.
    Information needs of women with recently diagnosed ovarian cancer - A longitudinal study2004In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 8, no 3, p. 200-207Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to investigate the information needs among patients with ovarian cancer and whether these information needs change over time. The information needs were evaluated three times, through structured interviews, and were based on the paired comparison approach developed by Degner and colleagues. A consecutive sample of patients (n=82) with recently diagnosed ovarian cancer was asked to participate.Sixty-four patients (78%) chose to participate. The three different measurements of participants' information needs revealed only small changes in these needs. The three most important information needs, in all measurements, were information about the likelihood of cure, information about the stage and spreading of the disease, and information about different treatment options. Information regarding sexual attractiveness was the lowest ranked item in all measurements. Regarding subgroups (age, education) the only significant difference throughout all measurements was that younger patients rated issues of sexual attractiveness higher than older patients (p=0.005).In this longitudinal study patients with ovarian cancer ranked information about the disease and its treatment (i.e. likelihood of cure, stage of disease, and treatment options) highest, and information about psychosocial aspects and self-care lowest. These findings are in accordance with the results from studies of women diagnosed with other types of cancer, which used the same methodology. © 2004 Elsevier Ltd. All rights reserved.

  • 8.
    Browall, Maria
    et al.
    Högskolan i Skövde, Institutionen för hälsa och lärande.
    Henoch, Ingela
    University of Gothenburg, The Sahlgrenska Academy, Institute of Health and Care Sciences, Göteborg, Sweden / University of Gothenburg Centre for Person-Centred Care (GPCC), Sahlgrenska Academy, University of Gothenburg, Sweden.
    Melin-Johansson, Christina
    Mid Sweden University, Department of Nursing, Östersund, Sweden.
    Strang, Susann
    University of Gothenburg, The Sahlgrenska Academy, Institute of Health and Care Sciences, Göteborg, Sweden.
    Danielson, Ella
    University of Gothenburg, The Sahlgrenska Academy, Institute of Health and Care Sciences, Göteborg, Sweden / Mid Sweden University, Department of Nursing, Östersund, Sweden.
    Existential encounters: Nurses' descriptions of critical incidents in end-of-life cancer care2014In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 18, no 6, p. 636-644Article in journal (Refereed)
    Abstract [en]

    Nurses working with cancer patients in end of life care need to be prepared to encounter patients' psychosocial and spiritual distress.

    Aim: The aim of this study was to describe nurses' experiences of existential situations when caring for patients severely affected by cancer.

    Methods and sample: Nurses (registered and enrolled) from three urban in-patient hospices, an oncology clinic and a surgery clinic and a palliative homecare team were, prior to the start of a training program, invited to write down their experiences of a critical incident (CI), in which existential issues were featured.

    Results: Eighty-eight CIs were written by 83 nurses. The CIs were analyzed with qualitative content analysis. Two main themes were found: Encounters with existential pain experiences, which concerned facing death and facing losses; and Encountering experiences of hope, which concerned balancing honesty, and desire to live.

    Conclusions: This study points out that health care professionals need to be aware of patients' feelings of abandonment in exposed situations such as patients' feelings of existential loneliness. That there are some patients that express a desire to die and this makes the nurses feel uncomfortable and difficult to confront these occurrences and its therefore important to listen to patients' stories, regardless of care organization, in order to gain access to patients' inner existential needs.

  • 9.
    Darcy, Laura
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ. CHILD. School of Life Sciences, University of Skövde, Skövde, Sweden.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Knutsson, Susanne
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    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.

  • 10.
    Darcy, Laura
    et al.
    Faculty of Caring Science, Work Life and Social Welfare, University of Borås, Borås, Sweden.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Young children's experiences of living an everyday life with cancer – A three year interview study2019In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 39, p. 1-9Article 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.
    Enskär, Karin
    Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science. Jönköping University, School of Health Science, HHJ. CHILD.
    Commentary1999In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 3, no 1, p. 13-Article in journal (Other academic)
  • 12.
    Enskär, Karin
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ. CHILD. School of Life Science, University of Skövde, Sweden.
    Knutsson, Susanne
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Darcy, Laura
    Department of Health Science, University College Borås, Sweden.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    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.

  • 13.
    Enskär, Karin
    et al.
    Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science. Jönköping University, School of Health Science, HHJ. CHILD.
    von Essen, Louise
    Prevalence of aspects of distress, coping, support and care among adolescents and young adults undergoing and being off cancer treatment2007In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 11, no 5, p. 400-408Article in journal (Refereed)
  • 14.
    Golsäter, Marie
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Child Health Services and Futurum Academy for Health and Care, Region Jönköping County, Jönköping, Sweden.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Knutsson, Susanne
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    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.

  • 15.
    Golsäter, Marie
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Futurum Academy for Health and Care Region Jönköping County, Jönköping, Sweden.
    Henricson, Maria
    Jönköping University, School of Health and Welfare, HHJ. ADULT. Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science.
    Knutsson, Susanne
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science.
    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.

  • 16.
    Gustavell, Tina
    et al.
    Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Division of Nursing, Stockholm, Sweden / Karolinska University Hospital, Gastrocentrum, Stockholm, Sweden.
    Sundberg, Kay
    Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Division of Nursing, Stockholm, Sweden.
    Frank, Catharina
    Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Division of Nursing, Stockholm, Sweden.
    Wengström, Yvonne
    Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Division of Nursing, Stockholm, Sweden / Karolinska University Hospital, Breast and Sarcoma Unit, Radiumhemmet, Stockholm, Sweden.
    Browall, Maria
    Högskolan i Skövde, Institutionen för hälsa och lärande.
    Segersvärd, Ralf
    Karolinska University Hospital, Gastrocentrum, Stockholm, Sweden / Karolinska Institutet, Department of Clinical Science, Intervention and Technology, Division of Surgery, Stockholm, Sweden.
    Langius-Eklöf, Ann
    Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Division of Nursing, Stockholm, Sweden.
    Symptoms and self-care following pancreaticoduodenectomy: Perspectives from patients and healthcare professionals - Foundation for an interactive ICT application2017In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 26, p. 36-41Article in journal (Refereed)
    Abstract [en]

    Purpose

    Poor prognosis and a problematic recovery period after pancreaticoduodenectomy means that patients may benefit from early detection of symptoms and support for self-management. Interactive Information and Communication Technology tools can be used for this purpose, but the content needs to be relevant to patients as well as healthcare professionals. To facilitate development of the content of an application for this purpose, the aim of this study was to explore common symptoms and self-care in the first six months after pancreaticoduodenectomy, as identified by patients and healthcare professionals.

    Method

    Data were collected through individual interviews with patients (n = 14), along with two focus group interviews and one individual interview with healthcare professionals (n = 10). Data were analysed using qualitative content analysis.

    Results

    Common symptoms after surgery were those related to eating, bowel function and emotional wellbeing, along with fatigue and pain. Some self-care activities and advice were mentioned in the interviews. The patients often experienced a lack of advice on self-care at discharge.

    Conclusions

    The results render knowledge of the symptoms it is important to be aware of and to assess regularly after pancreaticoduodenectomy. The results also contribute to knowledge about specific self-care related to these symptoms, even though it was not extensively described, and further research is needed to define evidence-based self-care advice.

  • 17.
    Högberg, Karin
    et al.
    Jönköping University, School of Health Science, HHJ. ADULT.
    Sandman, Lars
    School of Health Sciences, University of Borås.
    Broström, Anders
    Jönköping University, School of Health Science, HHJ. ADULT.
    Nyström, Maria
    School of Health Sciences, University of Borås.
    Caring through web-based counselling — A nursing intervention2015In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122Article in journal (Other academic)
  • 18.
    Högberg, Karin
    et al.
    Jönköping University, School of Health and Welfare, HHJ. ADULT.
    Sandman, Lars
    School of Health Science, University of Borås.
    Nyström, Maria
    School of Health Sciences, University of Borås.
    Stockelberg, Dick
    Section for Hematology and Coagulation, Dept of Internal Medicine, Sahlgrenska University Hospital, Göteborg, Sweden.
    Broström, Anders
    Jönköping University, School of Health and Welfare, HHJ. ADULT.
    Prerequisites required for the provision and use of web-based communication for psychosocial support in haematologic care2013In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 17, no 5, p. 596-602Article in journal (Refereed)
    Abstract [en]

    Purpose

    The purpose of this study was to describe the prerequisites required for the provision and use of web-based communication for psychosocial support within a haematology clinic, from a patient and family perspective.

    Method

    A qualitative design using content analysis was used. A strategically selected sample of patients (n = 11) and family members (n = 6) were offered access to a web-based communication capability with a nurse. After four months, individual interviews were conducted with all participants, in order to identify necessary prerequisites.

    Results

    Preferences and characteristics of the individual patient or family member are crucial as to whether web-based communication for support is perceived as useful. To feel comfortable with writing and to self-identify the need for support are fundamental in getting motivated to use web-based communication. An effective organization around psychosocial support in general is another prerequisite. Goals and responsibilities must be clearly defined for patients and family members to understand their rights and enable the transformation of opportunities into practice. The use of web-based communication must also be a convenient and naturally incorporated part of both individual and organizational use of the web in general.

    Conclusions

    Prerequisites of taking into account caretakers' different preferences and needs, providing highly structured psychosocial support activities and providing a congruent range of web services, are necessary for successful provision and use of web-based communication for psychosocial support.

  • 19. Koinberg, I
    et al.
    Langius-Eklöf, A
    Holmberg, L
    Fridlund, Bengt
    Växjö universitet.
    The usefulness of a multidisciplinary educational programme after breast cancer surgery: a prospective and comparative study2006In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 10, no 4, p. 273-282Article in journal (Refereed)
  • 20. Koinberg, I-L
    et al.
    Fridlund, Bengt
    Lunds universitet.
    Engholm, G-B
    Holmberg, L
    Nurse-led follow-up on demand or by a physician after breast cancer surgery: a rondomised study2004In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 8, no 2, p. 109-117Article in journal (Refereed)
  • 21. Kästel, Anne
    et al.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Björk, Olle
    Parents' views on information in childhood cancer care.2011In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 15, no 4, p. 290-295Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The aim of the study is to highlight parents' views on information in childhood cancer care. METHOD: A qualitative design, appropriate to gain a holistic view, has been chosen. Eight families with children diagnosed with cancer, of various ages and gender and from various backgrounds, participated in five interviews each during the first year of the child's illness. RESULTS: If the parents' needs were fulfilled, they were better equipped to handle the illness of their child, which is totally dependant on how the matter of information is dealt with. Information is a complex and demanding issue for the persons involved and the families' views were divergent in this area. Sometimes they seemed to obtain the information successfully and sometimes there were great problems in this respect. Therefore their preferences must be considered. CONCLUSION: There has to be an improvement from the aspects of what, when and how information is provided. The major findings of this study indicate that the families need better support and more distinct instructions to be able to cope with the situation.

  • 22.
    Nilsson, Stefan
    et al.
    Jönköping University, School of Health Science, HHJ. CHILD.
    Finnström, Berit
    Kokinsky, Eva
    Enskär, Karin
    Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science. Jönköping University, School of Health Science, HHJ. CHILD.
    The use of Virtual Reality for needle-related procedural pain and distress in children and adolescents in a paediatric oncology unit2009In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 13, no 2, p. 102-109Article in journal (Refereed)
    Abstract [en]

    Aim: It is essential to minimize pain and distress during painful procedures in children. This study examined the effect of using non-immersive Virtual Reality (VR) during a needle-related procedure on reported pain or distress of children and adolescents in a paediatric oncology unit and surveyed their response to the use of VR-equipment during the procedure.

    Method: Twenty-one children and adolescents were included in an intervention group with non-immersive VR and another 21 children and adolescents in a control group where they underwent either venous punctures or subcutaneous venous port devices. Self-reported pain and distress, heart rate and observational pain scores were collected before, during and after the procedures. Semi-structured qualitative interviews were conducted in conjunction with the completed intervention.

    Results: Self-reported and observed pain and distress scores were low and few significant differences of quantitative data between the groups were found. Two themes emerged in the analysis of the interviews; the VR game should correspond to the child and the medical procedure and children enjoyed the VR game and found that it did distract them during the procedure.

    Conclusion: The interviews showed that non-immersive VR is a positive experience for children undergoing a minor procedure such as venous puncture or a subcutaneous venous port access.

  • 23. Nolbris, Margaretha
    et al.
    Enskär, Karin
    Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science. Jönköping University, School of Health Science, HHJ. CHILD.
    Hellström, Anna-Lena
    Experience of siblings of children treated for cancer2007In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 11, no 2, p. 106-112Article in journal (Refereed)
  • 24.
    Olsson, Maria
    et al.
    Department of Pediatrics, Institute of Clinical Sciences, University of Gothenburg, Sahlgrenska Academy, Sweden.
    Jarfelt, Marianne
    Department of Pediatrics, Institute of Clinical Sciences, University of Gothenburg, Sahlgrenska Academy, Sweden.
    Pergert, Pernilla
    Childhood Cancer Research Unit, Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Experiences of teenagers and young adults treated for cancer in Sweden2015In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 19, no 5, p. 575-581Article in journal (Refereed)
    Abstract [en]

    PURPOSE: Approximately 600 teenagers and young adults, TYAs (ages 15-29), are newly diagnosed with cancer in Sweden every year and treated in many different units. The knowledge about TYAs is limited and there might be a need for a new approach in the care for this particular age group. The purpose of this study was to identify requirements TYAs in Sweden acknowledge as important to them.

    METHODS: 44 participants aged 15-29 who were treated at either pediatric or adult cancer units in Sweden, participated in focus group interviews. They were interviewed in groups based on whether they were treated in pediatric (14-18 years old) or adult units (18-29). The focus group interviews were recorded, transcribed, and analyzed using qualitative content analysis.

    RESULTS: Results of the study can be summarized into four categories: personal professional interaction, knowledge and participation, age-appropriate environment, and support. Important TYA care needs vary over time due to individual situations. The time line of the cancer experience can be described as a continuum; at diagnosis, during treatment, and in life-after cancer treatment.

    CONCLUSIONS: TYAs treated in Sweden have special needs that are not being satisfied, whether at pediatric or adult units. Areas that need closer attention are: close relatives' participation in the care, information on sex and fertility, age-appropriate social physical environments during treatment, and psychosocial support after treatment. In Sweden, there is a demand for increased knowledge on the special needs for TYAs in clinical practice.

  • 25.
    Olsson, Maria
    et al.
    Institute of Clinical Sciences, Department of Paediatrics, Sahlgrenska Academy, University of Gothenburg, Sweden.
    Steineck, Gunnar
    Department of Oncology, Division of Clinical Cancer Epidemiology, Sahlgrenska Academy, University of Gothenburg, Sweden.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Wilderäng, Ulrica
    Department of Oncology, Division of Clinical Cancer Epidemiology, Sahlgrenska Academy, University of Gothenburg, Sweden.
    Jarfelt, Marianne
    Institute of Clinical Sciences, Department of Paediatrics, Sahlgrenska Academy, University of Gothenburg, Sweden.
    Adolescent and young adult cancer survivors' perceptions of participating in a survey - Ethical and methodological considerations2019In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 39, p. 55-61Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The aim of this study was to understand patient-reported perception of participation in a population-based web-survey focusing on sensitive issues for adolescent and young adult cancer survivors.

    METHOD: A population-based web survey for adolescent and young adult cancer survivors including a matched control group. Adolescent and young adult cancer survivors from the population-based Swedish National Cancer Registry from four of the six register holders at Regional Cancer Centers in Sweden. Controls were randomly identified from the Swedish National Population registry, from the same register holders.

    RESULT: Of 729 eligible participants, 540 completed the survey i.e. 74% participation rate. The study population included 285 adolescent and young adult cancer survivors and 255 matched controls. None of the participants answered that the survey had a very negative impact on them and a minority of 43 (7.9%) of the 540 responded that they were mildly negatively affected by their participation in the study. There was a no significant difference between patients and controls regarding the negative effect of the participation (p = 0.29). Positive experiences of participating in the study were widely expressed and most participants (95%) found the study valuable.

    CONCLUSIONS: These findings suggest that the benefits clearly outweigh the risks when adolescent and young adult cancer survivors participate in surveys including sensitive and trauma-related aspects, given that the study design is ethically sound and participants are approached carefully. We also present a modified ethical protocol for epidemiological surveys on adolescents and young adult cancer survivors.

  • 26.
    Pergert, Pernilla
    et al.
    Karolinska Institutet.
    Ekblad, Solvig
    Karolinska Institutet.
    Björk, Olle
    Karolinska Institutet.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Andrews, Tom
    University College Cork, Ireland.
    Resourcing: An approach used by foreign-born parents struggling on in childhood cancer care2016In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 23, p. 1-7Article in journal (Refereed)
    Abstract [en]

    PURPOSE: To gain knowledge about foreign-born parents' experiences of dealing with their child's illness and treatment in the context of pediatric cancer care.

    METHOD: Data from 11 individual interviews with foreign-born parents were analyzed using qualitative inductive constant comparative analysis.

    RESULTS: To struggle on in childhood cancer care, foreign-born parents engaged in resourcing using various strategies including: information-monitoring, staying strong, support-seeking and concern-focusing. Parents experienced obstacles to information-monitoring and support-seeking related to their foreign background.

    CONCLUSIONS: The results provide a framework for understanding how foreign-born parents try to deal with childhood cancer care and can be used by health care staff to support their resourcing. Even though preconditions might differ, the strategies presented might also be used by native-born parents however further studied are needed.

  • 27.
    Pergert, Pernilla
    et al.
    Jönköping University.
    Ekblad, Solvig
    Enskär, Karin
    Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science. Jönköping University, School of Health Science, HHJ. CHILD.
    Björk, Olle
    Bridging obstacles to transcultural caring relationships: Tools discovered through interviews with staff in pediatric oncology care.2008In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 12, no 1, p. 35-43Article in journal (Refereed)
    Abstract [en]

    In this qualitative study we explored how health-care staff continuously resolve ‘‘obstacles to transcultural caring relationships’’ as they care for families with an immigrant background within the context of pediatric oncology care. A constant comparative method was used and data collection included 5 focus group interviews and 5 complementary individual interviews with health-care staff within pediatric oncology care. Bridging emerged as the way that health-care staff deal with obstacles to transcultural caring relationships. Bridging is a process in which various tools may be used and combined, including communicational tools, transcultural tools and organizational tools. Failure to use tools, or to use and combine them insufficiently, can bring the caring relationship to a halt, which leads to inequity in care. In order to ensure the provision of high-quality care despite differences in religion, culture, language and social situation, health-care staff need to bridge obstacles to transcultural caring relationships. & 2007 Elsevier Ltd. All rights reserved.

  • 28.
    Svedberg, Petra
    et al.
    School of Health and Welfare, Halmstad University, Halmstad, Sweden.
    Einberg, Eva-Lena
    Jönköping University, School of Health and Welfare, HHJ. CHILD. School of Health and Welfare, Halmstad University, Halmstad, Sweden.
    Wärnestål, Pontus
    School of Information Technology, Halmstad University, Halmstad, Sweden.
    Stigmar, Jennie
    Department of Pediatrics, Skåne University Hospital, Lund, Sweden.
    Castor, Anders
    Department of Pediatrics, Skåne University Hospital, Lund, Sweden.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Nygren, Jens M.
    School of Health and Welfare, Halmstad University, Halmstad, Sweden.
    Support from healthcare services during transition to adulthood – Experiences of young adult survivors of pediatric cancer2016In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 21, p. 105-112Article in journal (Other academic)
    Abstract [en]

    PURPOSE:

    Improved survival rates of pediatric cancer have drawn attention on how to best facilitate long-term follow up and transition from pediatric to adult care. The transition process is multifactorial and necessitates the joint involvement of the patient, the family and the healthcare providers. The purpose of this study was to explore the experiences of support from healthcare services during the transition from adolescence to adulthood described by young adult survivors of pediatric cancer.

    METHODS:

    A mixed method with a convergent parallel design was used to evaluate the experiences of receiving support from healthcare services (eg pediatric oncology and pediatric clinic) during transition from adolescence to adulthood described by young adult survivors of pediatric cancer (n = 213) in a nation wide cross-sectional survey.

    RESULTS:

    A quantitative assessment of the experienced extent and satisfaction of support from healthcare services to handle physical, mental and social changes to continue life after the disease showed that a majority of the participants had received insufficient support. The qualitative analysis indicated a need for equal roles in healthcare to promote participation, a need to manage and process consequences of the disease, and a need for continuous support.

    CONCLUSIONS:

    During transition to adulthood, there's a need for a personalized care plan that takes a holistic approach towards supporting the young cancer survivor in managing life in the best way. Identifying and handling the individual needs of pediatric cancer survivors is important for providing the resources and support required to increase the likelihood of successful transition to adulthood.

  • 29. von Essen, L
    et al.
    Enskär, Karin
    Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science. Jönköping University, School of Health Science, HHJ. CHILD.
    Skolin, I
    Important aspects of care and assistance for parents of children, 0-18 years of age, on or off treatment for cancer: Parent and nurse perceptions.2001In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 5, no 4, p. 254-264Article in journal (Refereed)
    Abstract [en]

    Important aspects of care and assistance for parents of children (0–18 years) diagnosed with cancer were investigated. Parents (N=114) and nurses (N=121) were asked the following questions: ‘What caring aspects are important for you/the parent to feel cared for?’ and ‘What help, if any, do you/the parent need outside the hospital?’ Nurses were asked to answer for a certain parent. Data were analyzed by content analysis. The following aspects of care were identified: accessible care, clinical competence, continuity, emotional support, information, participation in care, participation in decision making, physical ambience, shift in parenting roles, social competence, temporary assistance, own child is well cared for, and time. Most parents mentioned the importance of social competence and information, most nurses mentioned the importance of information and emotional support. The following aspects of assistance were identified: accessible care, emotional support, financial support, instrumental support, and support to live a normal family/social life. A third of the parents and a fourth of the nurses were of the opinion that the parent did not need any assistance. Most parents who mentioned a need of assistance mentioned a need for emotional and instrumental support. Most nurses mentioned a parental need for emotional support and accessible care.

1 - 29 of 29
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