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  • 1.
    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.

  • 2. Fritzell, Kaisa
    et al.
    Persson, Carina
    Karolinska Inst, Div Nursing, Dept Neurobiol Care Sci & Soc, S-14183 Huddinge, Sweden.
    Björk, Jan
    Hultcrantz, Rolf
    Wettergren, Lena
    Patients' views of surgery and surveillance for familial adenomatous polyposis.2010In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 33, no 2, p. E17-23Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Familial adenomatous polyposis (FAP) is an inherited condition that requires prophylactic surgery (colectomy) followed by a lifetime program of endoscopic surveillance to prevent colorectal cancer. Patients are normally free of symptoms before surgery but a majority report problems related to bowel function postoperatively.

    OBJECTIVE: The aim of the study was to gain a deeper understanding of how FAP affects life by exploring patients' view of what it is like living with the illness and being committed to a lifelong screening program.

    METHODS: Three focus group interviews were conducted, and data were analyzed using descriptive qualitative content analysis.

    RESULTS: The analysis resulted in two categories related to the participants' view of living with FAP. The first category was associated with concerns related to the hereditary and lifelong nature of the disease as well as to the prophylactic surgery and the second category was related to patients' ways of managing life.

    CONCLUSION: Most participants expressed unmet needs, such as lack of healthcare providers with good knowledge about FAP, practical and psychosocial support, FAP educational programs, and organized meetings with other persons with the condition.

    IMPLICATIONS FOR PRACTICE: One important aspect of living with FAP shared by the participants concerned ways of managing life concerns, something that healthcare providers caring for patients with FAP should identify and support. Furthermore, continuity of care by health care providers with good knowledge about FAP can be an important way of reducing patient concerns.

  • 3.
    Holm, Maja
    et al.
    Karolinska Institutet ; Ersta Sköndal Bräcke University College.
    Årestedt, Kristofer
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Linköping University.
    Carlander, Ida
    Ersta Sköndal Bräcke University College ; Karolinska Institutet.
    Wengström, Yvonne
    Karolinska Institutet ; Örebro University.
    Ohlen, Joakim
    Ersta Sköndal Bräcke University College ; University of Gothenburg.
    Alvariza, Anette
    Karolinska Institutet ; Ersta Sköndal Bräcke University College ; Dalen Hosp, Stockholm.
    Characteristics of the Family Caregivers Who Did Not Benefit From a Successful Psychoeducational Group Intervention During Palliative Cancer Care A Prospective Correlational Study2017In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 40, no 1, p. 76-83Article in journal (Refereed)
    Abstract [en]

    Background: Although there has been a steady increase in intervention studies aimed toward supporting family caregivers in palliative cancer care, they often report modest effect sizes and there is a lack of knowledge about possible barriers to intervention effectiveness. Objective: The aim of this study is to explore the characteristics of family caregivers who did not benefit from a successful psychoeducational group intervention compared with the characteristics of those who did. Intervention/Methods: A psychoeducational intervention for family caregivers was delivered at 10 palliative settings in Sweden. Questionnaires were used to collect data at baseline and following the intervention. The Preparedness for Caregiving Scale was the main outcome for the study and was used to decide whether or not the family caregiver had benefited from the intervention (Preparedness for Caregiving Scale difference score <= 0 vs >= 1). Results: A total of 82 family caregivers completed the intervention and follow-up. Caregivers who did not benefit from the intervention had significantly higher ratings of their preparedness and competence for caregiving and their health at baseline compared with the group who benefited. They also experienced lower levels of environmental burden and a trend toward fewer symptoms of depression. Conclusions: Family caregivers who did not benefit from the intervention tended to be less vulnerable at baseline. Hence, the potential to improve their ratings was smaller than for the group who did benefit. Implications for Practice: Determining family caregivers in cancer and palliative care who are more likely to benefit from an intervention needs to be explored further in research.

  • 4.
    Oksholm, Trine
    et al.
    VID Specialized University, Norway;Oslo University Hospital, Norway.
    Rustoen, Tone
    Oslo University Hospital, Norway;University of Oslo, Norway.
    Ekstedt, Mirjam
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Oslo University Hospital, Norway;Karolinska Institutet.
    Transfer Between Hospitals Is a Risk Situation for Patients After Lung Cancer Surgery2018In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 41, no 3, p. E49-E55Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Patients with lung cancer often undergo surgery shortly after diagnosis. Despite undergoing extensive operation, many patients are transferred to a local hospital a few days after surgery. Transitions between different levels of care are risky due to common medication and follow-up errors.

    OBJECTIVE: The study purpose was to explore patients' experiences of transfer between hospitals after lung cancer surgery. The study aim was to improve the quality of transitional care.

    METHODS: In-depth interviews with 14 patients with lung cancer (6 men, 8 women) were conducted in the patients' homes. Interviews were audiotaped, transcribed, and analyzed using the hermeneutic analysis method.

    RESULTS: Patients' experience of transfer between hospitals after lung cancer surgery is one of being in a caregiver gap characterized by feeling unprepared and uncertain, feeling unprotected and not being cared for, and suffering because of inadequate organization. Patients are vulnerable and at risk of injury before and during transfer, as well as after arrival at local hospitals.

    CONCLUSIONS: Study findings highlight a rarely considered risk of inadequate care before, during, and after hospital transfer of vulnerable patients. Transition between hospitals after lung cancer surgery is a part of patient care for which there are no policies or care plans and a time during which the borders of responsibility between caregivers are unclear.

    IMPLICATIONS FOR PRACTICE: It is important to develop guidelines for clearly defined responsibilities during transfer between hospitals. Healthcare providers need to plan transfers with the same rigor as they do hospital care.

  • 5.
    Persson, Carina
    et al.
    Neurobiologi, vårdvetenskap och samhälle.
    Sundin, Karin
    Being in the situation of a significant other to a person with inoperable lung cancer.2008In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 31, no 5, p. 380-8Article in journal (Refereed)
    Abstract [en]

    Little is known about how significant others experience their own situation when a family member becomes seriously ill. To illuminate the meanings of significant others' experiences of their situation after a family member had been diagnosed with inoperable lung cancer, we analyzed narratives from 12 significant others, using a phenomenological hermeneutic approach. Findings revealed 4 themes: feeling dislocated in life, being in an altered relationship, being in a struggle, and feeling secure. When reflecting on these findings, we considered the transition theories and works of Ricoeur and Lögstrup. The significant others' experiences indicated a transition process because of the changes brought about by the diagnosis of lung cancer and a struggle to endure and overcome difficulties and distress on the way to regaining a smooth functioning life. Furthermore, the diagnosis of lung cancer had altered the relationship toward the next of kin and meant not only feelings of increased closeness but also loss of intimacy and reciprocity. The significant others suffered in this process of transition, and healthcare professionals, who recognize the World Health Organization's definition of palliative care, may consider the findings of this study useful when reflecting on their care of families.

  • 6.
    Schildmeijer, Kristina
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Frykholm, Oscar
    Karolinska Institutet.
    Kneck, Åsa
    Karolinska Institutet;Ersta Sköndal Bräcke University College.
    Ekstedt, Mirjam
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Karolinska institutet.
    Not a straight line: patient's experiences of prostate cancer and their journey through the healthcare system2019In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 42, no 1, p. E36-E43Article in journal (Refereed)
    Abstract [en]

    Background

    Cancer and its treatment can severely impact quality of life, giving rise to complex needs with respect to follow-up care. To support patient needs and increase efficiency of care with limited resources, the Swedish government has launched national reforms to redesign cancer care pathways.

    Objective

    The aim of this study was to explore how prostate cancer patients experience their journey through the healthcare system when their care is provided according to the standardized care pathway, as described in healthcare policy documents.

    Methods

    A qualitative, descriptive approach with individual interviews was used. A template of a standardized prostate cancer pathway, created together with healthcare professionals, was used during interviews. Fourteen interviews were conducted with prostate cancer patients all operated on at a midsized hospital in southeast Sweden between October 2015 and April 2016. The interviews were analyzed with qualitative content analysis and illustrated in a patient journey map.

    Results

    We identified an overall theme, “walking a tightrope,” consisting of 4 categories: “waiting,” “becoming familiar with a troublesome body,” “adjusting to a different life,” and “information challenges.”

    Conclusions

    The clinical implementation of the standardized care pathway is described as a straight path through care, but patients described their experiences as walking a tightrope. Lack of information, especially about cancer treatment and its adverse effects, was the most common experience.

    Implications for Practice

    Our findings indicate areas where further healthcare tools could improve patient experiences of cancer treatment. This could include offering individualized information and tools to increase patient empowerment, as well as patient/caregiver collaboration (co-care).

1 - 6 of 6
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