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  • 1. Alenius, Lisa Smeds
    et al.
    Lindqvist, Rikard
    Ball, Jane E.
    Sharp, Lena
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Tishelman, Carol
    Between a rock and a hard place: Registered nurses' accounts of their work situation in cancer care in Swedish acute care hospitals2020Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 47, artikel-id 101778Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: Hospital organizational features related to registered nurses' (RNs') practice environment are often studied using quantitative measures. These are however unable to capture nuances of experiences of the practice environment from the perspective of individual RNs. The aim of this study is therefore to investigate individual RNs' experiences of their work situation in cancer care in Swedish acute care hospitals.

    Methods: This study is based on a qualitative framework analysis of data derived from an open-ended question by 200 RNs working in specialized or general cancer care hospital units, who responded to the Swedish RN4CAST survey on nurse work environment. Antonovsky's salutogenic concepts "meaningfulness", "comprehensibility", and "manageability" were applied post-analysis to support interpretation of results.

    Results: RNs describe a tension between expectations to uphold safe, high quality care, and working in an environment where they are unable to influence conditions for care delivery. A lacking sense of agency, on individual and collective levels, points to organizational factors impeding RNs' use of their competence in clinical decision-making and in governing practice within their professional scope.

    Conclusions: RNs in this study appear to experience work situations which, while often described as meaningful, generally appear neither comprehensible nor manageable. The lack of an individual and collective sense of agency found here could potentially erode RNs' sense of meaningfulness and readiness to invest in their work.

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  • 2. Doveson, Sandra
    et al.
    Holm, Maja
    Axelsson, Lena
    Fransson, Per
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Cancercentrum, Norrlands University Hospital, Umeå, Sweden.
    Wennman-Larsen, Agneta
    Facing life-prolonging treatment: The perspectives of men with advanced metastatic prostate cancer: an interview study2020Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 49, artikel-id 101859Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: Several life-prolonging treatment options have recently become available for metastatic castration resistant prostate cancer. However, research regarding patient experiences while undergoing these treatments is scarce. The aim was to explore the perspectives of men when facing life-prolonging treatment of metastatic castration-resistant prostate cancer.

    Method: Qualitative interviews were conducted with 16 men as they were starting, undergoing or had completed their first life-prolonging treatment. Interpretive description was used for analysis.

    Results: The results illuminate the complexity of facing life-prolonging treatment, with interlaced dimensions beyond just the outcome, and where the men described other dimensions of their lives in relation to the treatment. The results are presented as 4 themes; Considering treatment when the remainder of life is at stake, Preparing for the life-prolonging treatment after deciding to go through with it, Considering the prospect of the life-prolonging treatment not being successful and Reflecting on death and dying in the light of a life-limiting illness.

    Conclusions: The quality and content of the remainder of life are central for men when facing life-prolonging treatment of metastatic castration-resistant prostate cancer. This is important when weighing desired treatment outcomes against side effects, and when reflecting upon whether going through with treatment would be worth it or not. The results illuminate the importance of encouraging men at this stage to express expectations, hopes and fears regarding the treatment and the future when considering life-prolonging treatments. Nurses working with these patients are important in the decision-making process and in evaluating treatments, to detect needs for interventions.

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  • 3.
    Drury, Amanda
    et al.
    School of Nursing, Psychotherapy and Community Health, Dublin City University, Glasnevin, Dublin 9, Ireland.
    Sulosaari, Virpi
    Turku University of Applied Sciences, Turku, Finland; University of Turku, Turku, Finland.
    Sharp, Lena
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Regional Cancer Center Stockholm- Gotland, Stockholm, Sweden.
    Ullgren, Helena
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Department of Oncology and Pathology, Karolinska Institute, Stockholm, Sweden; ME Head & Neck, Lung & Skin Cancer, Karolinska Comprehensive Cancer Center, Stockholm, Sweden.
    de Munter, Johan
    Cancer Centre University Hospital Ghent, Ghent, Belgium.
    Oldenmenger, Wendy
    Department of Medical Oncology, Erasmus MC Cancer Institute, University Medical Center Rotterdam, Netherlands.
    The future of cancer nursing in Europe: Addressing professional issues in education, research, policy and practice2023Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 63, artikel-id 102271Artikel, forskningsöversikt (Refereegranskat)
    Abstract [en]

    Cancer nursing has evolved to meet the demands of rising cancer incidence, newer and more complex treatment options, and the emergence of specialist roles supporting patients from pre-diagnosis, through treatment, survivorship and end of life care. Nurses are involved in direct and in-direct care of people at risk of, and living with and after cancer in diverse contexts. As a result, nurses are positioned to have a significant influence on the processes and outcomes of cancer care, through education, research, policy, practice and leadership. However, nursing and cancer care face challenges, arising from workforce shortages, under-investment in services and under-representation in decision-making. This paper discusses the evolution of cancer nursing across education, policy, research, profession and practice, and sets an agenda for innovation and disruption across these domains to ensure sustainability of cancer care services and care for people living with and after cancer. We argue for the continued advancement of cancer nursing with critical focus on identifying and addressing inequities in role recognition and access to specialist cancer nursing education throughout Europe. Partnership, exchange of learning, and co-design will be central to progressing education, evidence and policy to support future growth in the cancer nursing workforce and embed cancer nurses in research and policy setting at local, national and international levels.

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  • 4.
    Ekwall, Eva
    et al.
    School of Health and Medical Sciences, Örebro University, Örebro, Sweden.
    Ternestedt, Britt-Marie
    Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden.
    Sorbe, Bengt
    School of Health and Medical Sciences, Örebro University, Örebro, Sweden.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Patients' perceptions of communication with the health care team during chemotherapy for the first recurrence of ovarian cancer2011Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 15, nr 1, s. 53-58Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    AIM: The aim of this study was to explore what women with recurrent ovarian cancer perceived as important in their communication with the health care team.

    METHOD: Interviews were conducted with 12 women at the end of chemotherapy treatment at a department of gynecological oncology in central Sweden. The interviews were subjected to qualitative content analysis.

    RESULTS: The findings stress the importance for the health care team to offer each woman the opportunity for support in becoming familiar with the disease. This theme of becoming familiar with the disease is underpinned by four sub-themes: being acknowledged as a unique person, getting help to make sense of information regarding the disease and its treatment, having the opportunity to be involved and to share responsibility, and feeling confident that medical expertise was adequate. Becoming familiar with the disease was expressed as a process of understanding and assimilating the whole new situation. To achieve familiarity, the women needed help from the health care team to make sense of the information they received. They stressed the importance of being able to influence encounters with health professionals, in accordance with their own perspectives. Being acknowledged as a unique person was a prerequisite to achieve familiarity. Also important to the women was having the opportunity to share responsibility for their care and lives with someone from the health care team.

    CONCLUSION: Helping women with recurrence of ovarian cancer attain a sense of familiarity with the disease should be an important priority for health care providers.

  • 5.
    Fallbjörk, Ulrika
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Frejeus, Elin
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Rasmussen, Birgit
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    A preliminary study into women's experiences of undergoing reconstructive surgery after breast cancer2012Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 16, nr 3, s. 220-226Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Breast cancer is the most common type of cancer among women. In Sweden, about 40% of women diagnosed with breast cancer undergo a mastectomy; breast reconstruction (BR) may be an option for these women. However, the experience of undergoing reconstructive surgery appears to be only very scarcely researched, despite its importance in clinical nursing.

    Aim: The purpose of this study was to explore women's experiences of undergoing breast reconstructive surgery after mastectomy due to breast cancer.

    Methods: Six women participated in narrative interviews about their experiences of reconstructive surgery, and the interview data were analysed using thematic narrative analysis.

    Results: All six women were unprepared for the strenuous experience of undergoing a BR. They described the process as difficult and painful, entailing several operations and an unexpectedly long recovery period. They were also unprepared for how arduous it would be, both physically and emotionally. However, getting a BR had been important to all the women. The BR process was captured in four themes: (1) uninformed care; (2) arduous experiences; (3) body alterations; and (4) moving on.

    Conclusions: Obtaining adequate information and being involved in the decision-making process along the pathway of a BR could help the women to prepare physically and emotionally for the strenuous experiences related to reconstructive surgery.

  • 6.
    Fallbjörk, Ulrika
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Rasmussen, Birgit H
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Karlsson, Stig
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Salander, Pär
    Umeå universitet, Samhällsvetenskapliga fakulteten, Institutionen för socialt arbete.
    Aspects of body image after mastectomy due to breast cancer: a two-year follow up study2013Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 17, nr 3, s. 340-345Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: This 2-year follow-up study explores aspects of body image after mastectomy due to breast cancer.

    Materials and Methods: This population-based study included 76 women living in northern Sweden who, during November 2006 to October 2007, underwent mastectomy due to breast cancer. The women completed a questionnaire entitled “Life After Mastectomy (LAM)” 10 months after the mastectomy and again 2 years later. We used SPSS version 18.0 for data processing and analysis.

    Results:The findings indicate that few significant changes in body image had taken place during the 2-year interval between the first and second completion of the questionnaire. An exception was a significant decrease in feelings of sexual attractiveness and comfort during sexual intimacy. At follow-up, 21% of the women had undergone breast reconstruction (BR). They were significantly younger than the women who had not had BR (53 v. 63 years). Besides being younger, no other significant differences could be found between those women who had undergone BR and those who had not. The fact that the decrease in sexual attractiveness and feelings of comfort during sexual intimacy also applied to the subgroup of women who had had BR may therefore be surprising. A better understanding of issues related to breast cancer treatment and sexual function is vital.

    Conclusion: It is important for health care professionals to be aware of problems related to sexual intimacy and to be prepared not just to provide information about these, but also to reflect on expectations v. reality together with the women.

  • 7.
    Granström, Brith
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för klinisk vetenskap, Öron- näs- och halssjukdomar.
    Isaksson, Joakim
    Department of Social Work, Stockholm University, Stockholm, Sweden.
    Westöö, Nilla
    Ear, Nose, and Throat Clinic, Uppsala University Hospital, Uppsala, Sweden.
    Holmlund, Thorbjörn
    Umeå universitet, Medicinska fakulteten, Institutionen för klinisk vetenskap, Öron- näs- och halssjukdomar.
    Tano, Krister
    Umeå universitet, Medicinska fakulteten, Institutionen för klinisk vetenskap, Öron- näs- och halssjukdomar.
    Laurell, Göran
    Department of Surgical Sciences, Section of Otorhinolaryngology and Head & Neck Surgery, Uppsala University, Uppsala, Sweden.
    Tiblom Ehrsson, Ylva
    Department of Surgical Sciences, Section of Otorhinolaryngology and Head & Neck Surgery, Uppsala University, Uppsala, Sweden.
    Perceptions of life and experiences of health care support among individuals one year after head and neck cancer treatment – An interview study2023Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 66, artikel-id 102383Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: To examine how individuals treated for head and neck cancer perceive life one year after the end of treatment and how they experience supportive efforts from health care.

    Methods: A semi-structured interview study of 21 patients was performed one year after the end of treatment. The patients gave their views concerning physical, psychological, and return-to-work issues, and their experiences concerning rehabilitative efforts from health care and particularly the contact nurse were captured. A thematic analysis was conducted.

    Results: One year after treatment the patients were still suffering from side effects and from fear of recurrence, but they strived to live as they did before the cancer diagnosis, such as having returned to work and resuming leisure activities. Moreover, the rehabilitative efforts from health care had ended. Having access to a contact nurse, also known as a clinical nurse specialist, was positive, however, the participants lacked regular long-term follow-ups with the contact nurse regarding rehabilitation needs. Improvement possibilities were seen in clarifying the role of the contact nurse and that the contact nurse should show engagement and make the initial contact with the patients.

    Conclusion: Despite the sequelae from treatment, the patients strived to live as before their diagnosis. By regular, engaged, and long-term follow-ups by the contact nurse, remaining needs may be uncovered, and appropriate individualized support and rehabilitation can be offered.

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  • 8.
    Hajdarevic, Senada
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Rasmussen, Birgit
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hörnsten, Asa
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    You never know when your last day will come and your trip will be over - Existential expressions from a melanoma diagnosis.2014Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 18, nr 4, s. 355-361Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    AIM: The aim of this study was to further explore expressions of existential experiences by patients diagnosed with malignant melanoma (MM).

    METHOD: Semi-structured interviews were performed consecutively after diagnosis among 30 patients with MM. The methodological approach was inspired by Gadamer's hermeneutic philosophy.

    RESULTS: The analysis of expressions of existential experiences after having been diagnosed with malignant melanoma revealed that it is an existential process that people go through, beginning with feelings of suddenly becoming groundless at the time of the diagnosis, including being empty and in a vacuum, being in chaos and uncertainty and being confronted with one's own death. Next theme searching for solid ground included striving to understand what lies ahead, striving to find a balance in life - fighting, hoping, going on living and striving to prioritize family. The last theme creating islands of solid ground when living with cancer included understanding what is meaningful in life, living in the moment - seizing the day and keeping watch on the body.

    CONCLUSION: On being diagnosed with malignant melanoma, people go through a process where many questions emerge, including an existential turmoil, which health professionals should be aware of to provide these patients with sufficient support.

  • 9. Jervaeus, Anna
    et al.
    Nilsson, Jenny
    Eriksson, Lars E.
    Lampic, Claudia
    Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Huddinge, Sweden; School of Health, Care and Social Welfare, Malardalen University, Västerås, Sweden.
    Widmark, Catarina
    Wettergren, Lena
    Exploring childhood cancer survivors' views about sex and sexual experiences -findings from online focus group discussions.2016Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 20, s. 165-172Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    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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  • 10.
    Lindqvist, Olav
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper, Onkologi.
    Rasmussen, Birgit H
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Widmark, Anders
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper, Onkologi.
    Experiences of symptoms in men with hormone refractory prostate cancer and skeletal metastases2008Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 12, nr 4, s. 283-290Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Advanced prostate cancer with skeletal metastases entails significant symptoms from both treatment and the disease itself. Although the diagnosis is a common one, knowledge of the symptom experience late in the disease trajectory is limited. The aim of the present study was to describe the experience of physical symptoms in men with hormone refractory prostate cancer and skeletal metastases. Twenty men answered a quality of life questionnaire before participating in semi-structured interviews. The interviews were analyzed using qualitative description. Findings show that the dominant symptoms were lack of energy and pain. Interestingly when talking about lacking energy the men described three different variants; lack of mental energy or initiative, lack of strength and stamina, and tiredness or sleepiness. Also, three different types of pain were described; pain from skeletal metastases, a diffuse moving pain, and pain not directly caused by the prostate cancer. Though a majority of the men scored being dissatisfied with their sex life; in the interviews, this was not described as a major distress. The findings also showed that the men experienced different symptoms despite the same diagnosis, skeletal metastases, stage, and androgen deprivation treatment, and that these symptoms are not necessarily experienced as problems or causing distress.

  • 11. Malmström, Marlene
    et al.
    Rasmussen, Birgit H.
    Bernhardson, Britt-Marie
    Hajdarevic, Senada
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Eriksson, Lars E.
    Andersen, Rikke Sand
    MacArtney, John I.
    It is important that the process goes quickly, isn't it?": A qualitative multi-country study of colorectal or lung cancer patients' narratives of the timeliness of diagnosis and quality of care2018Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 34, s. 82-88Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: The emphasis on early diagnosis to improve cancer survival has been a key factor in the development of cancer pathways across Europe. The aim of this analysis was to explore how the emphasis on early diagnosis and timely treatment is reflected in patient's accounts of care, from the first suspicion of colorectal or lung cancer to their treatment in Denmark, England and Sweden.

    Method: We recruited 155 patients in Denmark, England and Sweden who were within six months of being diagnosed with lung or colorectal cancer. Data were collected via semi-structured narrative interviews and analysed using a thematic approach.

    Results: Participants’ accounts of quality of care were closely related to how quickly (or not) diagnosis, treatment and/or healthcare processes went. Kinetic metaphors as a description of care (such as treadmill) could be interpreted positively as participants were willing to forgo some degree of control and accept disruption to their lives to ensure more timely care. Drawing on wider cultural expectations of the benefits of diagnosing and treating cancer quickly, some participants were concerned that the waiting times between interventions might allow time for the cancer to grow.

    Conclusions: Initiatives emphasising the timeliness of diagnosis and treatment are reflected in the ways some patients experience their care. However, these accounts were open to further contextualisation about what speed of healthcare processes meant for evaluating the quality of their care. Healthcare professionals could therefore be an important patient resource in providing reassurance and support about the timeliness of diagnosis or treatment.

  • 12.
    Mullaney, Tara
    et al.
    Umeå universitet, Teknisk-naturvetenskapliga fakulteten, Institutionen Designhögskolan.
    Olausson, Kristina
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper, Onkologi.
    Sharp, Lena
    Karolinska Institute, Department of Learning, Informatics, Management and Ethics.
    Zackrisson, Björn
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper, Onkologi.
    Edvardsson, David
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Nyholm, Tufve
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper, Radiofysik.
    The influence of a department's psychosocial climate and treatment environment on cancer patients' anxiety during radiotherapy2016Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 20, s. 113-118Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PURPOSE: The objective of this study is to determine whether there is a relationship between cancer patients' perceptions of the person-centeredness of their treatment experience and their anxiety levels during treatment.

    METHOD: A questionnaire was distributed to adult cancer patients going through external beam radiotherapy (RT) with curative intent at a university hospital in Sweden (n = 892), which included two surveys, the State Trait Anxiety Inventory-state specific questions (STAI-S), and the Patient-centered Climate Questionnaire (PCQ) and additional treatment-specific questions. Eligible patients were provided with the questionnaire on their seventh day of RT by an RT-nurse.

    RESULTS: Statistical analysis showed a significant negative relationship between STAI-S scores and PCQ scores, and a significant positive relationship between the Treatment Environment questions and the STAI-S scores. Multivariate regression modeling found the PCQ subscale of safety to have the strongest negative association with STAI-S scores, showing that a climate of safety can significantly decrease patient situational anxiety levels. On the other hand, difficulty tolerating the overall treatment experience, worry about the treatment equipment, or feelings of isolation or claustrophobia within the treatment room all significantly factor into increases in patient-reported situational anxiety levels.

    CONCLUSION: Both the treatment environment and the psychosocial climate of the RT clinic significantly impact cancer patient state anxiety levels. These findings suggest that actively employing a person-centered approach during RT, and designing the treatment environment to be more attentive to the patient experience can both play a significant role in decreasing patient situational anxiety during treatment.

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  • 13.
    Näppä, Ulla
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper. Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Department of Learning, Informatics, Management and Ethics/Medical Management Centre, Karolinska Institutet, S-171 77 Stockholm, Sweden.
    Rasmussen, Birgit H.
    Axelsson, Bertil
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper.
    Routine assessment of performance status during palliative chemotherapy when approaching end-of-life2016Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 21, s. 266-271Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: Palliative chemotherapy treatment (PCT) offered late in the cancer disease trajectory may be problematic. It is not easy to accurately calculate whether the potential benefits will outweigh the side effects. This study investigates whether routine use of the Performance Status in Palliative Chemotherapy questionnaire (PSPC) affects the proportions of patients receiving PCT during the last month of life, care utilization, and documentation routines. A secondary aim was to gather registered nurses' experiences of the PSPC in routine use.

    Methods: Eighty incurable patients with cancer who had used the PSPC before PCT were compared to 160 matched controls, using non-parametric tests. Nurses' reflections on the PSPC were collected and reviewed.

    Results: No significant differences were found between users and non-users of the PSPC in terms of proportions receiving PCT during the last month of life. Higher proportions of patients older than 74 years received PCT than in previous studies (40% versus 17%). Nurses considered the questionnaires to be a valuable complement to verbal information when trying to acquire an accurate picture of patients' performance status.

    Conclusion: At this point in the development of the PSPC we did not find any significant decreases in the proportion of patients receiving PCT during the last month in life. However, as the nurses valued the PSPC, it can be used as a complementary tool in assessment of performance status until further research is conducted. 

  • 14.
    Näppä, Ulla
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper, Onkologi.
    Rasmussen, Birgit H
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Axelsson, Bertil
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper, Onkologi.
    Lindqvist, Olav
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Department of Learning, Informatics, Management and Ethics/Medical Management Centre, Karolinska Institutet, Stockholm, Sweden.
    Challenging situations when administering palliative chemotherapy: a nursing perspective2014Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 18, nr 6, s. 591-597Artikel i tidskrift (Övrigt vetenskapligt)
    Abstract [en]

    Palliative chemotherapy treatments (PCT) are becoming more common for patients with incurable cancer; a basic challenge is to optimize tumour response while minimizing side-effects and harm. As registered nurses most often administer PCT, they are most likely to be confronted with difficult situations during PCT administration. This study explores challenging situations experienced by nurses when administering PCT to patients with incurable cancer.

    Methods: Registered nurses experienced in administering PCT were asked in interviews to recall PCT situations they found challenging. Inspired by the narrative tradition, stories were elicited and analysed using a structural and thematic narrative analysis.

    Results: A total of twenty-eight stories were narrated by seventeen nurses. Twenty of these were dilemmas that could be sorted into three storylines containing one to three dilemmatic situations each. The six dilemmatic situations broadly related to three interwoven areas: the uncertainty of the outcome when giving potent drugs to vulnerable patients; the difficulty of resisting giving PCT to patients who want it; and insufficient communication between nurses and physician.

    Conclusion: Nurses who administer PCT are engaged in a complex task that can give rise to a number of dilemmatic situations. The findings may be interpreted as meaning that at least some situations might be preventable if the knowledge and insight of all team members – nurses, physicians, patients, and relatives – are jointly communicated and taken into account when deciding whether or not to give PCT. Forming palliative care teams early in the PCT trajectory, could be beneficial for staff and patients.

  • 15. Ohlsson-Nevo, E.
    et al.
    Andershed, B.
    Nilsson, Ulrica G
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Anderzen-Carlsson, A.
    Finding a wider horizon: Experiences of being a next-of-kin of a person suffering from colorectal cancer as told after having participated in a psychoeducational program2013Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 17, nr 3, s. 324-330Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Aim: The aim of this study was twofold: first, to describe the experience of being the next-of-kin of a person suffering from colorectal cancer (CRC), and second, to describe how a psychoeducational program (PEP) might contribute to the next-of-kin's life experience. Psychosocial interventions for next-of-kin to cancer patients are effective in improving quality of life issues, although there are conflicting results in previous studies. Most studies have evaluated the effects of PEP for mixed cancer groups but there is little knowledge about how next-of-kin to a person treated for CRC describe their experience of life and their experience of participating in a PEP. Methods: The study used a qualitative descriptive design. Individual, open-ended interviews with each of the 18 next-of-kin, of persons receiving treatment for CRC, who participated in a PEP. Data were analyzed using content analysis. Results: Based on the experiences described by the next-of-kin to a person treated for CRC, the subtheme; Facing a personal challenge was developed. From their described experiences of participating in a PEP, the subtheme Obtaining New Insights and Perspectives emerged. One main theme was finally identified; Finding a Wider Horizon. The study illuminates the importance of integrating the next-of-kin/family in the colorectal cancer care. Conclusion: The findings from this study can be used to plan future interventions for next-of-kin to patients with CRC as it offers possibilities to understand the next-of-kin's situation and experience from participating in a PEP.

  • 16. Pascoe, Liz
    et al.
    Edvardsson, David
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Benefit finding in adult cancer populations: Psychometric properties and performance of existing instruments2014Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 18, nr 5, s. 484-491Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose:

    To analyse the psychometric properties and performance of existing instruments that aim to measure benefit finding in adult cancer populations.

    Methods:

    Four electronic databases were searched. The focus was to identify English language, peer-reviewed journal articles where benefit finding is assessed with adult cancer populations. The terms 'benefit finding', 'cancer', 'instruments', 'scales', and 'adult' were used in various combinations. The instruments were rated against established criteria for instrument construction, reliability, validity, and interpretability.

    Results:

    Seventeen benefit finding instruments were reviewed. The instruments present a multifarious conceptualisation of the construct. Instrument structure is diverse. Several instruments (n = 4) reported on all the psychometric properties, but not interpretability. One instrument, the Stress-Related Growth Scale - Revised, additionally reported correlation statistics with another benefit finding instrument. Based on the information provided, the psychometric rigour of a number of instruments is yet to be established.

    Conclusions:

    One instrument reported validation statistics for all the identified criteria. While existing instruments provide a range of operationalisations of the benefit finding concept and have been more or less used in previous research, a majority are in the early stages of development and require further validation work in adult cancer populations. Given the increasing interest in the role benefit finding in clinical practice, researchers are urged to use these instruments further and to report relevant validation statistics when using them. (C) 2014 Elsevier Ltd. All rights reserved.

  • 17.
    Pascoe, Liz
    et al.
    La Trobe/Austin Clinical School of Nursing, La Trobe University, Australia.
    Edvardsson, David
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. La Trobe/Austin Clinical School of Nursing, La Trobe University, Australia.
    Benefit finding in cancer: A review of influencing factors and health outcomes2013Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 17, nr 6, s. 760-766Artikel, forskningsöversikt (Refereegranskat)
    Abstract [en]

    Purpose: Emerging research is revealing that the use of positively-oriented coping efforts may be beneficial to people living with and beyond cancer treatments. Benefit finding is such a positively-oriented coping strategy suggested to influence psychological and physical health outcomes, but the empirical evidence for these suggestions is unclear. This study aimed to review the existing evidence on factors that influence the use of benefit finding, and the associated health outcomes in cancer. Methods: Searches were undertaken in established databases. Studies were reviewed if published between January 1980 and June 2012. The search terms 'benefit finding', 'coping', 'positive emotions', and 'neoplasms' were used in various combinations. Ten studies were included in the Review. Results: Optimism was the only influencing factor that was consistently supported by evidence in the literature (n = 5/10). For health outcomes, physiological stress-response biomarkers of enhanced immune function were associated with benefit finding (n = 2/10). Inconsistent evidence were found between benefit finding and social support, and between benefit finding and psychological outcomes. Conclusions: There is inconclusive evidence to date to conclude that certain factors influence the use of benefit finding in cancer populations, or that benefit finding is clearly associated with any particular health outcomes. There is beginning evidence to conclude that optimism is related to benefit finding, and that benefit finding is associated with reduced physiological stress-response biomarkers. Further research is needed to explore predictors, co-variates, associations and clinical outcomes of benefit finding in cancer populations.

  • 18. Pascoe, Liz
    et al.
    Edvardsson, David
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Psychometric properties and performance of the 17-item Benefit Finding Scale (BFS) in an outpatient population of men with prostate cancer2015Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 19, nr 2, s. 169-173Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: To analyse the psychometric properties and performance of the 17-item Benefit Finding Scale (BFS) in an Australian outpatient sample of men with prostate cancer.

    Methods: The instrument's psychometric properties and performance were rated against established criteria for reliability (internal consistency), construct validity (instrument dimensionality) and variability (floor and ceiling effects).

    Results: Internal consistency reliability was satisfactory as evidenced by a Cronbach's alpha of 0.95 Dimensionality analysis confirmed a unidimensional structure indicating construct validity. A greater than 15% floor effect suggested limited data variability.

    Conclusion: The 17-item BFS seems to have satisfactory psychometric properties for use in an outpatient sample of men with prostate cancer, with some questions regarding detection of variability. The high internal consistency reliability points to the instruments ability to reliably capture the benefit finding construct in this population. The evidence for instrument dimensionality indicates a unidimensional scale, and thus a calculation of a single total score can be recommended. The >15% floor effect suggests that there may be issues with the instrument's ability to detect variance, and thus some questions remain regarding the instrument's ability to discern change in health status over time. Nevertheless, the findings of this study together with previous evidence indicate that the 17-item BFS can be recommended as the tool of choice when exploring benefit finding in adult cancer populations.

  • 19. Pascoe, Liz
    et al.
    Rahman, Muhammad Aziz
    Edvardsson, Kristina
    Jokwiro, Yangama
    McDonald, Ewan
    Lood, Qarin
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. College of Science, Health and Engineering, School of Nursing & Midwifery, La Trobe University, Melbourne, Australia; Department of Health and Rehabilitation, Institute of Neuroscience and Physiology, Sahlgrenska Academy, Centre for Ageing and Health – AgeCap, University of Gothenburg, Sweden.
    Edvardsson, David
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. College of Science, Health and Engineering, School of Nursing & Midwifery, La Trobe University, Melbourne, Australia.
    Li, Xia
    Psychometric evaluation of the English version 14-item resilience scale (RS) in an Australian outpatient population of men with prostate cancer2018Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 35, s. 73-78Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: Human resilience refers to the processes of positive adaptation and development in the context of perceived significant threats to an individual's life or function. This paper analyses the psychometric properties and performance of the English version 14-item Resilience Scale (RS) in an Australian outpatient sample of men (n = 209) with advanced prostate cancer receiving androgen deprivation therapy.

    Methods: A cross-sectional design was used to collect data from a purposive sample of men. The instrument's psychometric properties were rated against established criteria for reliability (internal consistency), construct validity (instrument dimensionality) and variability (floor and ceiling effect). Exploratory and confirmatory factor-analyses were performed.

    Results: The English version 14-item RS demonstrated satisfactory internal consistency reliability (Cronbach's alpha = 0.91). A greater than 15% ceiling effect suggested limited data variability. Confirmatory factor analysis showed that items in the instrument measured primarily as a single factor with a good model of fit (RMSEA = 0.059; TLI = 0. 950, CFI = 0.962).

    Conclusion: The English version 14-item RS had satisfactory psychometric properties to capture the concept of resilience in an Australian outpatient sample of men with advanced prostate cancer, with some questions regarding detection of variability for ceiling effect. Further psychometric evaluation of the instrument in other adult clinical settings is recommended.

  • 20.
    Pusa, Susanna
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Persson, Carina
    Sundin, Karin
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Significant others' lived experiences following a lung cancer trajectory: From diagnosis through and after the death of a family member2012Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 16, nr 1, s. 34-41Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PURPOSE: The purpose of this study was to illuminate the meanings of significant others' lived experiences of their situation from diagnosis through and after the death of a family member as a consequence of inoperable lung cancer.

    METHODS: The data was collected through narrative interviews from eleven significant others and interpreted using a phenomenological hermeneutic approach. KEYRESULTS: Four themes emerged: being unbalanced, being transitional, being cared for, and moving forward.

    CONCLUSION: The significant others' experiences can be viewed as a transition process, beginning with a sense of dislocation in life and continuing through struggling, enduring and conquering the consequences of the altered life situation until finally approaching a point characterized by a sense of stability. Different strategies of adjustment and adaptation to the new living conditions are considered. Furthermore, the results indicate the need to develop a framework for family-centered health care in order to enhance the wellbeing for the significant others both in the anticipatory grief phase and during the bereavement phase.

  • 21.
    Ringnér, Anders
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Karlsson, Stig
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Hällgren Graneheim, Ulla
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    A person-centred intervention for providing information to parents of children with cancer: experiences and effects2015Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 19, nr 3, s. 318-324Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: The aim of this paper is to describe the experiences of participating in a person-centred information intervention aimed at parents of children with cancer.

    Methods: Eight parents participated in the intervention, beginning two months after their child's diagnosis. The intervention was based upon the representational approach to patient education and a mixed method approach was employed in the study. The experiences of parents and intervention nurses were captured via qualitative interviews and the effects of the intervention on parental psychosocial measures, primarily perceived stress, were evaluated using a single-case design with web-based questionnaires.

    Results: Parents expressed high satisfaction with the intervention, as reported in the follow-up interviews and on the scale measuring satisfaction. However, no changes were seen in the quantitative measures of psychosocial distress. The nurses performing the intervention felt it was useful and feasible.

    Conclusions: A representational approach to providing person-centred information to parents of children with cancer was appreciated and considered feasible by both the parents and the intervention nurses. However, further research is needed considering the lack of effect on the parents' perceived stress.

  • 22.
    Ringnér, Anders
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Umeå University Hospital, Clinical Department of Paediatrics, Umeå, Sweden.
    Olsson, Cecilia
    Karlstads universitet.
    Eriksson, Emma
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Umeå University Hospital, Clinical Department of Paediatrics, Umeå, Sweden.
    From, Ida
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Umeå University Hospital, Clinical Department of Paediatrics, Umeå, Sweden.
    Björk, Maria
    Högskolan i Jönköping.
    A moment just for me: Parents’ experiences of an intervention for person-centred information in paediatric oncology2021Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 51, artikel-id 101923Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: Information can help parents of children with cancer by reducing uncertainty and giving them a sense of control in a chaotic situation. Although providing information to parents is a core activity of paediatric oncology nursing, few studies focus on interventions for informing parents. Thus, the aim of this study is to evaluate parents’ experiences after participating in a person-centred information intervention for parents of children with cancer.

    Method: This study is part of a process evaluation of a person-centred informational intervention in paediatric oncology for patients’ parents. Qualitative semi-structured interviews with 13 parents who had taken part in the intervention were analysed using qualitative content analysis.

    Results: An opening for healing emerged as the overarching theme, consisting of three categories. Gaining a deeper understanding of the entire situation describes how parents benefitted from processing current topics and moving forward by learning. Caring reflections in a safe space describes how parents appreciated having a moment just for themselves and feeling better by venting their feelings. Meeting a competent and compassionate nurse describes how parents experienced trust and being listened to.

    Conclusion: Having individual information meetings integrated as a primary nursing responsibility, mediated by competent and compassionate nurses also responsible for the care of the child, could enhance person-centred care and individualise parental education.

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  • 23. Sharp, Lena
    et al.
    Finnila, Kristina
    Umeå universitet, Medicinska fakulteten, Institutionen för strålningsvetenskaper.
    Johansson, Hemming
    Abrahamsson, Marie
    Hatschek, Thomas
    Bergenmar, Mia
    No differences between Calendula cream and aqueous cream in the prevention of acute radiation skin reactions: results from a randomised blinded trial2013Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 17, nr 4, s. 429-435Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: The purpose of this blinded, randomized clinical trial was to compare two topical agents (Calendula Weleda (R) cream vs. Essex (R) cream) in reducing the risk of severe acute radiation skin reactions (ARSR) in relation to adjuvant radiotherapy (RT) for breast cancer.

    Method: The primary endpoint was the difference in proportion of patients with ARSR, assessed with the Radiation Therapy Oncology Group/The Organization for Research and Treatment of Cancer Acute Radiation Morbidity Scoring Criteria (RTOG/EORTC scale) at follow-up. The secondary endpoints included patient reported outcome measures; Quality of Life Questionnaire (QLQ-C30), Sleep disturbances (MOS-sleep questionnaire) and symptoms from the irradiated area (visual analogue scale). Patients' experiences and adherence to the topical agents were also evaluated.

    Results: A total of 420 patients were randomised and 411 were analysed. With the exception of previous chemotherapy, the treatment groups were well balanced, both regarding treatment- and patient-related factors. The incidence of severe ARSR (RTOG/EORTC grade <= 2) at the follow-up visit was 23% (n = 45) in the Calendula group and 19% (n = 38) in the Essex group. We found no difference in severe ARSR between the groups at any point of assessment. The patients reported low levels of skin related symptoms and no statistically significant differences between the groups were found.

    Conclusions: No differences in ARSR between patients randomised to Calendula or Essex cream was found. ARSR seem to be a relatively limited problem, probably more influenced by treatment related factors than by choice of skin care products in this patient group.

  • 24.
    Sharp, Lena
    et al.
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Regional Cancer Center, Stockholm-Gotland, Sweden; European Oncology Nursing Society (EONS), Advocacy Working Group, Belgium.
    Fransson, Per
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad.
    Fowler, Matthew
    Department of Oncology, University Hospitals of Derby and Burton NHS Foundation Trust, United Kingdom; European Oncology Nursing Society (EONS), Advocacy Working Group, Belgium.
    Ullgren, Helena
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Regional Cancer Center, Stockholm-Gotland, Sweden; Theme Cancer, ME Head and Neck, Lung and Skin Cancer, Karolinska Comprehensive Cancer Center, Stockholm, Sweden; Karolinska Institute, Department of Oncology-Pathology, Stockholm, Sweden; European Oncology Nursing Society (EONS), Advocacy Working Group, Belgium.
    Aspects of occupational safety: a survey among European cancer nurses2024Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 70, artikel-id 102595Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: Nurses are particularly at risk for occupational exposure to hazardous cancer drugs, risking both acute and chronic health effects. Knowledge on the implemented safety precautions into minimizing these risks is limited.

    Methods: The European Cancer Nursing Index (ECNI) was developed by the European Oncology Nursing Society (EONS) to illustrate the development and status of this profession. In this study, anonymous online survey data on occupational safety reported by European cancer nurses as part of the ECNI 2022, was analysed.

    Results: A total of 630 cancer nurses from 29 countries responded to the survey. A majority reported that written guidelines (n = 553, 88%) on safe handling and administration of hazardous drugs, personal protection equipment (PPE) and cytotoxic spillage kits (n = 514, 82%) were available at their workplaces. 130 (21%) nurses reported that wipe testing to assess any residual hazardous drugs on workplace surfaces were conducted systematically at their workplaces. 185 (29%) nurses reported that nurses sometimes or always continued with their regular tasks (including handling hazardous cancer drugs) during pregnancy and breast feeding. 185 (29%) also responded that nurses at their workplaces did not receive an introductory education program before handling hazardous drugs. In total, 346 (55%) of the nurses reported that their workplace had a freedom to speak-up guardian or whistle blower policy for members of staff.

    Conclusions: Even if most nurses report that there are safety routines in place at their workplaces, the results reveal several serious occupational risks for European nurses handling hazardous cancer drugs. Actions are needed to improve and optimize occupational safety for nursing staff.

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  • 25. Sundberg, Kay K.
    et al.
    Lampic, Claudia
    Department of Caring Sciences and Sociology, University of Gävle, Sweden; Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
    Björk, Olle
    Arvidson, Johan
    Wettergren, Lena
    Positive and negative consequences of childhood cancer influencing the lives of young adults2009Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 13, nr 3, s. 164-170Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    The aim of the study was to describe how young adults who have survived childhood cancer consider their present life to be influenced by the cancer experience. A cohort of 246 long-term survivors were approached a median of 16 years after diagnosis. Semi-structured telephone interviews were conducted based on the Swedish version of the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW). Interviews were analysed using content analyses. When asked if cancer negatively or positively currently affected their lives, 68% reported at least one negative consequence and 53% at least one positive consequence. The most frequently reported negative consequences include a variety of physical impairments and limitations in participating in activities; positive consequences describe a more positive view of life and of self. Women more often than men reported negative psychological impact, a changed body appearance and positive interaction with others. CNS tumours and combined treatment were somewhat associated to a higher extent of negative consequences. Overall, the results indicate that long-term survivors of childhood cancer are getting along quite well despite shortcomings.

  • 26.
    Ullgren, Helena
    et al.
    Regional Cancer Centre Stockholm-Gotland, Stockholm, Sweden; Karolinska University Hospital, Department of Oncology, Stockholm, Sweden.
    Kirkpatrick, Lily
    Kilpeläinen, Sini
    Sharp, Lena
    Working in silos? – Head & Neck cancer patients during and after treatment with or without early palliative care referral2017Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 26, s. 56-62Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: The primary aim was to describe patients with Head and Neck (H&N) cancer referred to palliative care and how the care transition from acute oncological to palliative care impacted on both Health related quality of life (HRQoL) and information. The secondary aim was to explore H&N cancer patients' HRQoL and perceived information.

    Methods: H&N cancer patients were identified via the Swedish Cancer Register. Data were collected using the following questionnaires; European Organization for Research and Treatment of Cancer (EORTC) QLQ C-30, INFO25, and a study-specific questionnaire.

    Key results: Out of 289 patients, 203 (70%) responded and among these, 43 (21%) reported being referred to palliative care. Global health was the lowest reported functional scale (median score = 67) and fatigue (median scores 33) the highest reported symptom (QLQ C-30). Patients with a written care plan were significantly more satisfied with information regarding self-care compared to patients without a care plan. Patients referred to palliative care were less satisfied with information regarding disease (p < 0.000), the spread of the disease (p < 0.001) and were more likely to visit hospital emergency departments (43% vs. 19% p < 0.000).

    Conclusion: To avoid H&N cancer care in silos, a closer integration between the oncology and the palliative care team is needed. Further research on the complex situation of having oncological treatment concurrent with palliative care, is needed.

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  • 27. Westman, B.
    et al.
    Ullgren, Helena
    Umeå universitet, Medicinska fakulteten, Institutionen för omvårdnad. Regional Cancer Centre, Stockholm, Sweden; Karolinska University Hospital, Theme Cancer, Patient Area Airway, Lung and Skin Cancer, Stockholm, Sweden.
    Olofsson, A.
    Sharp, L.
    Patient-reported perceptions of care after the introduction of a new advanced cancer nursing role in Sweden2019Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 41, s. 41-48Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: Extensive research results show quality improvements associated with advanced cancer nursing roles. Despite this, these roles are not implemented in many countries. The aim of this cross-sectional, population-based study was to compare patients' perception of care, before and after the introduction of a new advanced nursing role, the coordination contact nurse (CCN), in a region in Sweden.

    Method: All patients (with gynaecological, haematological, Head & Neck, upper gastrointestinal cancers) diagnosed in the region the year prior and one-year post introducing the new CCN role were identified from the Swedish Cancer Register. Data were collected using the European Organization of Research and Treatment of Cancer (EORTQ Quality of Life Questionnaire (QLQ-C30 and QLQ-INFO25) and a study specific questionnaire.

    Result: The results, based on baseline (n = 869) and follow-up data (n = 1003), show statistically significant patient-reported improvements after the introduction of the CCN role, regarding health-related patient information (EORTC QLQ- INFO25 global mean score increased from 41.23 to 44.16, p = 0.0006). We found statistically significant improvements related to availability of supportive care resources, e.g. increased reported access to contact nurse (from 53% to 66%, p <= 0.0001) and individual written care plans (from 40% to 54%, p < 0.0001). We also found some improvements related to patient involvement and care coordination, but also room for further developments.

    Conclusion: The implementation of the new advanced cancer nursing role may have contributed to important improvements, but it has also identified areas in need of development. Further research with long-term evaluations of CCN roles in other contexts, are both needed and on-going.

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