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1.
  • Alvariza, Anette, et al. (författare)
  • A person-centred approach in nursing: Validity and reliability of the Carer Support Needs Assessment Tool
  • 2018
  • Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 35, s. 1-8
  • Tidskriftsartikel (refereegranskat)abstract
    • Purpose: The Carer Support Needs Assessment Tool (CSNAT) was developed for use among family caregivers in palliative care for assessment of their support needs. The purpose of this study was to translate and evaluate the validity and reliability of the CSNAT in a sample of Swedish family caregivers and nurses in a palliative care context. Methods: Data for this validation study was collected during 2016 in the context of palliative home care in two larger Swedish cities. The study was conducted in three stages to reach conceptual, semantic, operational and measurement equivalence between the original UK version and the Swedish version. Stage I consisted of translation to Swedish. In Stage II, cognitive interviews were performed with 8 family caregivers and 10 nurses. Data were analyzed based on relevance, clarity and sensitivity. In Stage III, the CSNAT and related self-rating measures (caregiver burden, preparedness for caregiving and quality of life) were completed by 118 family caregivers. Data quality, construct validity and test-retest reliability were evaluated. Results: The CSNAT items were considered relevant and useful to identify areas of support needs. The Swedish CSNAT showed sound psychometric properties with satisfactory data quality and few problems with missing data across items (1.8%-6.1%). All items except one correlated as expected (rho>0.3) with caregiver burden, supporting construct validity. All items had satisfactory test-retest reliability (κw=0.45-0.75). Conclusions: This study further adds to the validity of the CSNAT and shows in addition that it is reliable and stable for use among family caregivers in palliative care. © 2018 Elsevier Ltd
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2.
  • Andersson, Camilla, et al. (författare)
  • It's a question of endurance : patients with head and neck cancer experiences of 18F-FDG PET/CT in a fixation mask
  • 2017
  • Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 29, s. 85-90
  • Tidskriftsartikel (refereegranskat)abstract
    • PURPOSE: This study aimed to explore how patients with head and neck cancer experienced undergoing an (18)F-fluoro-deoxy-glucose positrons emissions tomography/computed tomography ((18)F-FDG PET/CT) examination in a fixation mask.METHOD: Interviews were conducted with nine patients with known or suspected head and neck cancer who were scheduled for the examination for the first time. The phenomenological method according to van Manen and his four lifeworld existentials; lived space, lived body, lived time, and lived relation was used to analyse the interviews.RESULTS: The thoughts and feelings of the patients during the PET/CT examination varied, some found it very difficult, while others did not. However, for all the patients, it was an experience that required some form of coping to maintain composure for example distraction.CONCLUSIONS: PET/CT examnation in a fixation mask may be strenuous for some patients. Patients need more detailed information, including suggestions for coping behaviours, prior to the examination, as well as higher level of support during and after the examination. The results of this study may be used to improve patient care and optimize the procedure of PET/CT examination in a fixation mask.
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3.
  • Backman, Malin, et al. (författare)
  • Experiencing health - Physical activity during adjuvant chemotherapy treatment for women with breast cancer
  • 2016
  • Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 21, s. 160-167
  • Tidskriftsartikel (refereegranskat)abstract
    • 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.
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6.
  • Björk, Maria, et al. (författare)
  • Like being covered in a wet and dark blanket : Parents' lived experiences of losing a child to cancer
  • 2016
  • Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 25, s. 40-45
  • Tidskriftsartikel (refereegranskat)abstract
    • 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. 
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7.
  • Björklund, Margereth, 1950-, et al. (författare)
  • Experiences of psychological flow as described by people diagnosed with and treated for head and neck cancer
  • 2019
  • Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 43, s. 1-8
  • Tidskriftsartikel (refereegranskat)abstract
    • Purpose: To describe flow as experienced by people diagnosed with and treated for head and neck cancer. Method: A descriptive design based on a deductive qualitative content analysis was used to explain Csikszentmihalyi's flow theory from the perspective of people living with head and neck cancer. Interviews were conducted with seven participants diagnosed with and treated for different forms and stages of head and neck cancer. Results: Experiences of flow were associated with people's interests, skill levels and actions involving and creating both happiness and the feeling of something worth living for. Optimal flow was a state of consciousness in which mind and body work together, and the people were completely absorbed in an activity related to nature, hobbies or family. Microflow occurred as part of everyday life, relieving stress and anxiety and helping them to focus on their daily routines. This included humming, listening to the radio or watching TV. Conclusions: The peoples inner strength and desire to feel better made flow possible, and they used unknown skills that enhanced self-satisfaction. Managing self-care activities increased feelings of control, participation and enjoyment. This calls for person-centred care with a salutogenic approach based on the peoples own interests, skill levels and actions; what makes the person feel happy.
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8.
  • Blomberg, Karin, 1970-, et al. (författare)
  • Symptoms and self-care strategies during and six months after radiotherapy for prostate cancer : Scoping the perspectives of patients, professionals and literature
  • 2016
  • Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 21, s. 139-145
  • Tidskriftsartikel (refereegranskat)abstract
    • 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 ¼ 8) and health care professionals (n ¼ 10) and a scoping review of the literature (n ¼ 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.
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  • Bränström, Richard, et al. (författare)
  • Physical activity following a breast cancer diagnosis : Implications for self-rated health and cancer-related symptoms
  • 2015
  • Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 19:6, s. 680-5
  • Tidskriftsartikel (refereegranskat)abstract
    • PURPOSE: Studies have consistently shown an association between physical activity and increased health and well-being after a cancer diagnosis. Nevertheless, large proportions of breast cancer survivors do not meet recommended levels of physical activity. The aim of this study was to describe physical activity levels during the first two years after being diagnosed with breast cancer, and to explore the predictive ability of physical inactivity on longer-term self-rated health, physical symptoms, and psychological distress.METHOD: Study participants were women recently having had a first breast cancer surgery at one of the three main hospitals in Stockholm between 2007 and 2009. A total of 726 women were included and responded to six questionnaire assessments during the 24 months following diagnosis.RESULTS: Less than one third of the participants were sufficiently physically active at baseline. Physical activity decreased after surgery, increased at 8 month follow-up, and subsequently decreased slightly during the subsequent follow-up period. Physical inactivity was related to reduced health, increased symptoms such as pain, depression, and anxiety.CONCLUSION: This study provides additional support for the beneficial consequences of being physically active after a breast cancer diagnosis and highlights a potential target for intervention. This study provides additional support showing that being physically active even at a very low level seems to result in health benefits. Physical activity should be encouraged among patients treated for breast cancer.
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11.
  • Carlsson, Eva, 1959, et al. (författare)
  • Development and validation of the preparedness for Colorectal Cancer Surgery Questionnaire: PCSQ-pre 24
  • 2016
  • Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 25, s. 24-32
  • Tidskriftsartikel (refereegranskat)abstract
    • Purpose The aims of the study were to develop and psychometrically evaluate a patient-reported outcome instrument for the measurement of preoperative preparedness in patients undergoing surgery for colorectal cancer. Methods This study was conducted in two stages: a) instrument development (item generation, construction of items and domains), empirical verification and b) instrument evaluation. A questionnaire with 28 items measuring preparedness for surgery was developed covering four domains and was tested for content validity with an expert panel and with patients. Psychometric testing of the questionnaire was conducted on 240 patients undergoing elective surgery for colorectal cancer. Results The scale content validity index of the preparedness items was 0.97. The final version consisted of 24 items measuring 4 subscales: Searching for and making use of information, Understanding and involvement in the care process, Making sense of the recovery process and Support and access to medical care. Confirmatory factor analysis revealed good model fit with standardized factor loadings ranging from 0.58 to 0.97. A well-fitting second-order factor model provided support for a total preparedness score with second-order factor loadings ranging from 0.75 to 0.93. The ordinal alpha values of the four latent factors ranged from 0.92 to 0.96, indicating good internal consistency. The polyserial correlations with the total score were 0.64 (p<0.01) for the overall preparedness question and 0.37 (p<0.01) for overall well-being. Conclusion The Swedish Preparedness for Colorectal Cancer Surgery Questionnaire for use in the preoperative phase demonstrated good psychometric properties based on a sound conceptualization of preparedness. © 2016 Elsevier Ltd
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  • Darcy, Laura, et al. (författare)
  • Young children's experiences of living an everyday life with cancer – A three year interview study
  • 2019
  • Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 39, s. 1-9
  • Tidskriftsartikel (refereegranskat)abstract
    • PurposeThe 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.
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13.
  • Enskär, Karin, et al. (författare)
  • A Swedish perspective on nursing and psychosocial research in paediatric oncology : A literature review
  • 2015
  • Ingår i: European Journal of Oncology Nursing. - Amsterdam : Elsevier. - 1462-3889 .- 1532-2122. ; 19:3, s. 310-317
  • Tidskriftsartikel (refereegranskat)abstract
    • 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. (C) 2014 Elsevier Ltd. All rights reserved.
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14.
  • Golsäter, Marie, et al. (författare)
  • Are children as relatives our responsibility? : How nurses perceive their role in caring for children as relatives of seriously ill patients
  • 2016
  • Ingår i: European Journal of Oncology Nursing. - Amsterdam : Elsevier. - 1462-3889 .- 1532-2122. ; 25, s. 33-39
  • Tidskriftsartikel (refereegranskat)abstract
    • 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.
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  • Golsäter, Marie, 1962-, et al. (författare)
  • Parents’ perceptions of how nurses care for children as relatives of an ill patient : Experiences from an oncological outpatient department
  • 2019
  • Ingår i: European Journal of Oncology Nursing. - Amsterdam : Elsevier. - 1462-3889 .- 1532-2122. ; 39, s. 35-40
  • Tidskriftsartikel (refereegranskat)abstract
    • 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.
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16.
  • Gustavell, Tina, et al. (författare)
  • Symptoms and self-care following pancreaticoduodenectomy : Perspectives from patients and healthcare professionals - Foundation for an interactive ICT application
  • 2017
  • Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 26, s. 36-41
  • Tidskriftsartikel (refereegranskat)abstract
    • PurposePoor 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.MethodData 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.ResultsCommon 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.ConclusionsThe 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.
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  • Holm, Maja, et al. (författare)
  • Recruiting participants to a randomized controlled trial testing an intervention in palliative cancer care - The perspectives of health care professionals
  • 2017
  • Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 31, s. 6-11
  • Tidskriftsartikel (refereegranskat)abstract
    • Purpose: The recruitment of participants to randomized controlled trials (RCTs) in palliative cancer care by health care professionals is often unsuccessful, which could result in failure to achieve study power. The purpose of this paper is to describe how health care professionals experienced recruiting patients and family caregivers to an RCT in palliative cancer care. Methods: The study had a qualitative explorative design. Ten palliative home care settings were involved in the RCT and data were generated through focus group discussions and interviews with health care professionals who were responsible for the recruitment. The transcripts were analyzed with interpretive descriptive principles. Results: The experiences of the health care professionals reveal that communicating the RCT-design to patients and family caregivers was a challenging part of the recruitment but was considered a process of learning over time. The delicate situation that participants were living under added to the challenge and health care professionals believed that the randomized design was contrary to their normal approach to always offer the best possible support. Conclusions: The results contribute valuable knowledge for future trials in palliative cancer care. To promote successful recruitment, health care professionals may be in need of more training to improve their communication skills and it may be necessary to consider other research designs than the RCT. (C) 2017 Elsevier Ltd. All rights reserved.
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18.
  • Holst-Hansson, Annette, et al. (författare)
  • Hoping to reach a safe haven :Swedish families' lived experience when a family member is diagnosed with breast cancer
  • 2017
  • Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 31, s. 52-58
  • Tidskriftsartikel (refereegranskat)abstract
    • Purpose: When a woman is diagnosed with breast cancer, it affects all family members. Therefore, the aim of this study was to elucidate family members lived experience when a family member is diagnosed with breast cancer. Method: The study had a hermeneutic phenomenological design including individual conversational interviews conducted face-to-face with six women with breast cancer and their family members at two different points of time, in order to elucidate families' lived experience, both as individuals and as a unit, from each family member's perspective. Results: Living as a family in the presence of breast cancer is a challenging endeavour to regain an ordinary, safe life, hoping to reach a safe haven. The families felt that life as they knew it had disappeared and they were fumbling in the dark, trying to find support and guidance on their path to ordinary life. The family members were pursuing balance by attempting to keep the family together and maintaining a positive attitude while battling against fear and treatment-related side effects. Finally, the families were struggling with guilt and inadequacy, due to their difficulties in communicating the emotional distress that the illness brought upon them, at the same time as they felt abandoned by the healthcare professionals. Conclusions: Families experience an unmet need of information and support, which implies that healthcare professionals may want to acknowledge and include the family already at the time of diagnosis in order to help them endure and cope with the distressing experience and thus increase their wellbeing.
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  • Jakobsson, Sofie, 1968, et al. (författare)
  • Living through pelvic radiotherapy:A mixed method study of self-care activities and distressful symptoms.
  • 2015
  • Ingår i: European journal of oncology nursing : the official journal of European Oncology Nursing Society. - : Elsevier BV. - 1532-2122. ; 19:3, s. 301-309
  • Tidskriftsartikel (refereegranskat)abstract
    • To explore patients' experience of their illness when undergoing pelvic radiotherapy by describing the presence and severity of distressful symptoms and to explore initiated self-care activities in response to illness and symptoms.
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21.
  • Jervaeus, Anna, et al. (författare)
  • Exploring childhood cancer survivors' views about sex and sexual experiences -findings from online focus group discussions.
  • 2016
  • Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 20, s. 165-172
  • Tidskriftsartikel (refereegranskat)abstract
    • PURPOSE: To explore childhood cancer survivors' views about sex and sexual experiences and, as an additional aim, their possible needs for care and support from health care professionals regarding sexual life.METHODS: Written online focus group discussions were performed with survivors of childhood cancer, identified through the Swedish Childhood Cancer Registry; 133 (36%; aged 16-25) participated. Written text was analysed using qualitative content analysis.RESULTS: The analysis resulted in one main category: Could my cancer experience have an impact on my sexual life? with four generic categories: Sex considered to be good, Feeling insecure and falling behind, Relating sex to a stable relationship and Concerns related to the physical body. In general, participants had not reflected on the possibility that their cancer experience could impact on sexual life. Sex was often considered to be something natural, important and taken for granted. However, thoughts and worries were expressed including being shy, feeling insecure and falling behind peers. Physical concerns included vaginal dryness and difficulties related to erection and reaching orgasm. Many participants stated that sexual issues had not been discussed with health care professionals, however, the need for such support differed.CONCLUSIONS: Many of the childhood cancer survivors' did not relate their sexual experiences to previous cancer treatment. However, problems were expressed, both of emotional and physical nature. Many participants stated that they had not received any information or support regarding sexual issues from health care professionals, why it is recommended to be regularly addressed in follow-up care.
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  • Kisch, Annika, et al. (författare)
  • Being a haematopoietic stem cell donor for a sick sibling : Adult donors' experiences prior to donation
  • 2015
  • Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 19:5, s. 529-535
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: There is a lack of knowledge about sibling stem cell donors' experiences pre-donation and the waiting period before the donation might have been long. The donors and their corresponding sibling recipients were simultaneously included in two different interview studies. The results from the recipient study have been presented in a separate paper. PURPOSE: The aim was to explore the experiences of being a stem cell donor for a sibling, prior to donation. METHOD: Ten adult sibling donors were interviewed prior to stem cell donation. The interviews were digitally recorded, transcribed verbatim and subjected to qualitative content analysis. RESULTS: The main theme Being a cog in a big wheel describes the complex process of being a sibling donor prior to donation, covering a mixture of emotions and thoughts. The four subthemes Being available, Being anxious, Being concerned and Being obliged cover the various experiences. The sibling donors' experiences are influenced by the quality of the relationship with the sick sibling. CONCLUSIONS: Sibling stem cell donors go through a complex process once they have accidentally got involved in. They have been asked to become a donor; it was not a voluntary choice. In caring for sibling stem cell donors the nurses should be aware of the complexity of the process they experience and take into consideration their personal situation and needs. Providing optimal care for both sibling donors and their corresponding recipients is a challenge, and further improvement and exploration are needed.
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  • Lundberg, Tina, et al. (författare)
  • Bereavement stressors and psychosocial well-being of young adults following the loss of a parent – A cross-sectional survey
  • 2018
  • Ingår i: European Journal of Oncology Nursing. - : Churchill Livingstone. - 1462-3889 .- 1532-2122. ; 35, s. 33-38
  • Tidskriftsartikel (refereegranskat)abstract
    • Purpose: The knowledge about young adults who have lost a parent to cancer is limited, and to reach a broader understanding about this group, this study used the Dual Process Model of Coping with Bereavement (Stroebe and Schut, 1999) as a theoretical framework. The purpose of this study was to describe loss- and restoration-oriented bereavement stressors and psychosocial wellbeing of young adults following the loss of a parent to cancer. Method: This survey used baseline data from a longitudinal study. Young adults, aged 16–28 years, who lost a parent to cancer more than two months earlier and agreed to participate in support groups held at three palliative care services in Sweden, responded to a comprehensive theory-based study-specific questionnaire. Results: Altogether, 77 young adults (64 women and 13 men) answered the questionnaire an average of five-to-eight months after the loss. Twenty percent (n = 15) had not been aware of their parent's impending death at all or only knew a few hours before the death, and 65% (n = 50) did not expect the death when it occurred. The young adults reported low self-esteem (n = 58, 76%), mild to severe anxiety (n = 55, 74%), mild to severe depression (n = 23, 31%) and low life satisfaction. Conclusion: Young adults reported overall poor psychosocial wellbeing following bereavement. The unexpectedness and unawareness of the parent's imminent death, i.e., loss-oriented bereavement stressors, might influence psychosocial wellbeing. Despite these reports, restoration-oriented stressors, such as support from family and friends, helped them to cope with the loss.
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