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  • 1.
    Andersson, Jenny
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Brandstetter-Hiltunen, Marie
    Umeå University, Faculty of Social Sciences, Department of Psychology.
    Knutsson, Emma
    Umeå University, Faculty of Social Sciences, Department of Psychology.
    Hamberg, Katarina
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine. Umeå University, Faculty of Social Sciences, Umeå Centre for Gender Studies (UCGS).
    Is it possible to identify patient´s sex when reading blinded illness narratives? An experimental study about gender bias2008In: International Journal for Equity in Health, E-ISSN 1475-9276, Vol. 7, no 21, p. 1-9Article in journal (Refereed)
    Abstract [en]

    Background: In many diseases men and women, for no apparent medical reason, are not offered the same investigations and treatment in health care. This may be due to staff's stereotypical preconceptions about men and women, i.e., gender bias. In the clinical situation it is difficult to know whether gender differences in management reflect physicians' gender bias or male and female patients' different needs or different ways of expressing their needs. To shed some light on these possibilities this study investigated to what extent it was possible to identify patients' sex when reading their blinded illness narratives, i.e., do male and female patients express themselves differently enough to be recognised as men and women without being categorised on beforehand?

    Methods: Eighty-one authentic letters about being diseased by cancer were blinded regarding sex and read by 130 students of medicine and psychology. For each letter the participants were asked to give the author's sex and to explain their choice. The success rates were analysed statistically. To illuminate the participants' reasoning the explanations of four letters were analysed qualitatively.

    Results: The patient's sex was correctly identified in 62% of the cases, with significantly higher rates in male narratives. There were no differences between male and female participants. In the qualitative analysis the choice of a male writer was explained by: a short letter; formal language; a focus on facts and a lack of emotions. In contrast the reasons for the choice of a woman were: a long letter; vivid language; mention of emotions and interpersonal relationships. Furthermore, the same expressions were interpreted differently depending on whether the participant believed the writer to be male or female.

    Conclusion: It was possible to detect gender differences in the blinded illness narratives. The students' explanations for their choice of sex agreed with common gender stereotypes implying that such stereotypes correspond, at least on a group level, to differences in male and female patients' illness descriptions. However, it was also obvious that preconceptions about gender obstructed and biased the interpretations, a finding with implications for the understanding of gender bias in clinical practice.

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  • 2.
    Andersson, Jenny
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Hamberg, Katarina
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Using patients' narratives to reveal gender stereotypes among medical students2013In: Academic Medicine, ISSN 1040-2446, E-ISSN 1938-808X, Vol. 88, no 7, p. 1015-1021Article in journal (Refereed)
    Abstract [en]

    Purpose: Gender bias exists in patient treatment, and, like most people, health care providers harbor gender stereotypes. In this study, the authors examined the gender stereotypes that medical students hold about patients. Method: In 2005, in Umeå, Sweden, the authors collected 81 narratives written by patients who had undergone cancer treatment; all information that might reveal the patients’ gender was removed from the texts. Eighty-seven medical students read 40 or 41 narratives each, guessed the patient’s gender, and explained their guess. The authors analyzed the students’ explanations qualitatively and quantitatively to reveal the students’ gender stereotypes and to determine whether those stereotypes had any predictive value for correctly guessing a patient’s gender. Results: The students’ explanations contained 21 categories of justifications, 12 of which were significantly associated with the students guessing one gender or the other. Only three categories successfully predicted a correct identification of gender; two categories were more often associated with incorrect guesses. Conclusions: Medical students enter their training program with culturally shared stereotypes about male and female patients that could cause bias during their future careers as physicians. To prevent this, medical curricula must address gender stereotypes and their possible consequences. The impact of implicit stereotypes must be included in discussions about gender bias in health care.

  • 3.
    Blaschke, Sarah
    et al.
    Dept of Cancer Experiences Research, Univ of Melbourne.
    O'Callaghan, Clare
    Dept of Cancer Experiences Research, Univ of Melbourne.
    Schofield, Penelope
    Dept of Cancer Experiences Research, Univ of Melbourne.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Cancer patients' experiences with nature: Normalizing dichotomous realities2017In: Social Science and Medicine, ISSN 0277-9536, E-ISSN 1873-5347, Vol. 172, p. 107-114Article in journal (Refereed)
    Abstract [en]

    Aims: To explore cancer patients' subjective experiences with nature in order to examine the relevance of nature-based care opportunities in cancer care contexts. The rationale was to describe the underlying mechanisms of this interaction and produce translatable knowledge. Methods: Qualitative research design informed by grounded theory. Sampling was initially convenience and then theoretical. Competent adults with any cancer diagnosis were eligible to participate in a semi structured interview exploring views about the role of nature in their lives. Audio-recorded and transcribed interviews were analyzed using inductive, cyclic, and constant comparative analysis. Results: Twenty cancer patients (9 female) reported detailed description about their experiences with nature from which a typology of five common nature interactions emerged. A theory model was generated constituting a core category and two inter-related themes explaining a normalization process in which patients negotiate their shifting realities (Core Category). Nature functioned as a support structure and nurtured patients' inner and outer capacities to respond and connect more effectively (Theme A). Once enabled and comforted, patients could engage survival and reconstructive maneuvers and explore the consequences of cancer (Theme B). A dynamic relationship was evident between moving away while, simultaneously, advancing towards the cancer reality in order to accept a shifting normality. From a place of comfort and safety, patients felt supported to deal differently and more creatively with the threat and demands of cancer diagnosis, treatment and outlook. Conclusions: New understanding about nature's role in cancer patients' lives calls attention to recognizing additional forms of psychosocial care that encourage patients' own coping and creative processes to deal with their strain and, in some cases, reconstruct everyday lives. Further research is required to determine how nature opportunities can be feasibly delivered in the cancer care setting.

  • 4.
    Eriksson, Carola
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine. Umeå University, Faculty of Medicine, Department of Nursing.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Hamberg, Katarina
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine. Umeå University, Faculty of Social Sciences, Umeå Centre for Gender Studies (UCGS).
    Men's experiences of intense fear related to childbirth investigated in a Swedish qualitative study2007In: Journal of Men's health and gender, Vol. 4, p. 409-418Article in journal (Refereed)
  • 5.
    Fallbjörk, Ulrika
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Karlsson, Stig
    Umeå University, Faculty of Medicine, Department of Nursing.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Rasmussen, Birgit H
    Umeå University, Faculty of Medicine, Department of Nursing.
    Differences between women who have and have not undergone breast reconstruction after mastectomy due to breast cancer2010In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 49, no 2, p. 174-179Article in journal (Refereed)
    Abstract [en]

    Aim: This study compares potential differences between women with breast cancer who after mastectomy had undergone breast reconstruction with those who had not. Material and methods: All women (N=149) in the northern medical region of Sweden who had undergone mastectomy in 2003 received a self-reported questionnaire entitled “Life After Mastectomy (LAM)” that included standardized measures of sociodemographic, decision-making process, breast reconstruction (BR) yes or no, sexuality, and body image. SPSS was used for data processing. Results: In total 85% of the women returned the questionnaire and of these 25% had undergone BR. In accordance with previous studies, we found that the mean age of the women in the BR group was significantly lower (52 vs. 64 years), they had a higher education, and a higher proportion were employed, influenced by the physician's opinion regarding BR, sexually active, and rated a negative impact concerning the factors attractiveness and body disclosure. A multiple regression analysis, however, showed that the choice to undergo breast reconstruction or not was only independently associated with age, feeling of attractiveness and sexual interest. Discussion: Age explained most differences found between the two groups. When researchers try to identify what differentiates the groups of women who undergo reconstruction between those who do not undergo reconstruction after mastectomy, it is thus necessary to take into consideration that the meanings of mastectomy, body image, attractiveness and similar variables may vary due to the phase of a woman's life. In conclusion, considering the impact of age is of paramount importance in future studies for our understanding of women's experiences.

  • 6.
    Fallbjörk, Ulrika
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Rasmussen, Birgit H
    Umeå University, Faculty of Medicine, Department of Nursing.
    Karlsson, Stig
    Umeå University, Faculty of Medicine, Department of Nursing.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Aspects of body image after mastectomy due to breast cancer: a two-year follow up study2013In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 17, no 3, p. 340-345Article in journal (Refereed)
    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.
    Fallbjörk, Ulrika
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Rasmussen, Birgit H
    Umeå University, Faculty of Medicine, Department of Nursing.
    From "no big deal" to "losing oneself": different meanings of mastectomy2012In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 35, no 5, p. E41-E48Article in journal (Refereed)
    Abstract [en]

    Background: Because of early detection and advanced treatment options, more women with breast cancer survive after mastectomy and thus have to face the choice of living with or without a reconstructed breast for many years to come. O

    bjective: This article investigates these women’s narratives about the impact of mastectomy on their lives, as well as their reflections on breast reconstruction.

    Methods: Fifteen women were strategically chosen from a previous population-based study on mastectomy. They were contacted for further exploration in thematic narrative-inspired interviews 4.5 years after mastectomy.

    Results: Three types of storylines were identified. In the first storyline, the mastectomy was described as ‘‘no big deal’’; losing a breast did not disturb the women’s view of themselves as women, and breast reconstruction was not even worth consideration. In the second storyline, the women described the mastectomy as shattering their identity. Losing a breast implied losing oneself as a sexual being, a woman, and a person. The third storyline fell in between the other two; the sense of femininity was wounded, but not to the extent that they felt lost as women.

    Conclusion: Our findings suggest that the experience of mastectomy due to breast cancer is very much individual and contextual. Losing a breast may be of minor or major importance.

    Implications for Practice: Healthcare practitioners should be attentive to how the women themselves experience the personal meaning of losing a breast and guard against vague preconceptions based on the breast-sexuality-femininity discourse and its connection to what the patient needs.

  • 8.
    Fallbjörk, Ulrika
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Rasmussen Holritz, Birgit
    Umeå University, Faculty of Medicine, Department of Nursing.
    Different meanings of mastectomy due to breast cancer and reflections about breast reconstruction2011In: European journal of cancer: Vol. 47 Suppl. 1, Oxford: Pergamon , 2011, Vol. 47, p. S323-S323Conference paper (Refereed)
  • 9.
    Henriksson, Roger
    et al.
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Malmström, Annika
    Bergström, Per
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Bergh, Gertrud
    Trojanowski, Thomas
    Andreasson, Lars
    Blomquist, Erik
    Jonsborg, Sonny
    Edekling, Tomas
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Brännström, Thomas
    Umeå University, Faculty of Medicine, Department of Medical Biosciences, Pathology.
    Bergenheim, A Tommy
    Umeå University, Faculty of Medicine, Department of Pharmacology and Clinical Neuroscience, Pharmacology.
    High-grade astrocytoma treated concomitantly with estramustine and radiotherapy2006In: Journal of Neuro-Oncology, ISSN 0167-594X, E-ISSN 1573-7373, Vol. 78, no 3, p. 321-326Article in journal (Refereed)
  • 10.
    Isaksson, Joakim
    et al.
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Lilliehorn, Sara
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    A nationwide study of Swedish oncology social workers: Characteristics, clinical functions and perceived barriers to optimal functioning2017In: Social work in health care, ISSN 0098-1389, E-ISSN 1541-034X, Vol. 56, no 7, p. 600-614Article in journal (Refereed)
    Abstract [en]

    Oncology social workers (OSWs) play a key role in cancer services, but they have mainly been described from an Anglo-Saxon perspective. This study aims to widen the field by scrutinizing the role and function of OSWs in Sweden. By means of a nationwide questionnaire to Swedish OSWs, the professional characteristics of this group are described, as well as their descriptions and reflections on their clinical function and their experiences of barriers to optimal functioning. Our findings indicate that Swedish OSWs seem to have taken a different path than in other countries by mainly providing therapeutic treatment and counselling to the patients rather than working with discharge planning. However, due to a mismatch between clinical demands and the training of Swedish OSWs, some suggestions are provided for future social work education in Sweden.

  • 11.
    Isaksson, Joakim
    et al.
    Umeå University, Faculty of Social Sciences, Department of Social Work. Institutionen för socialt arbete, Stockholms universitet.
    Lilliehorn, Sara
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Cancer patients' motives for psychosocial consultation: Oncology social workers' perceptions of 226 patient cases2018In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 27, no 4, p. 1180-1184Article in journal (Refereed)
    Abstract [en]

    Objective: Although oncology social workers (OSWs) have emerged as a core profession in the provision of psychosocial  services, there is a lack of empirical studies that describe their daily clinical work with patients. The overall aim of this study was to explore cancer patients' motives for consulting an OSW.

    Methods: From a nationwide survey, we used data from 226 patient cases that OSWs met face to face. The OSWs were asked to describe how the case was referred to them, the patient's characteristics, and what they perceived as the patient's motives for contacting them as well as additional motives that came up during the consultations.

    Results: Patients have different motives for consulting an OSW, and these motives change over the course of consultations; while feeling associated with being diagnosed with cancer were often the initial motive, questions associated with moving on in life and dealing with relationships and the overall life situation were added over time.

    Conclusions: The results show that Swedish OSWs' function is multifaceted and that the initial motives among patients rarely predicts the content in consultations over time. Based on the diversity of motives, it seems obvious that OSWs (at least in Sweden) need a broad education in the psychology of counselling. It also seems obvious that even if patients initially were referred by health care staff to the OSW due to psychological reactions to being ill, staff should also be attentive to the fact that relational and socio-economic/juridical issues are of great concern for the patients.

  • 12.
    Isaksson, Joakim
    et al.
    Department of Social Work, Stockholm University, Stockholm, Sweden.
    Lilliehorn, Sara
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Next of kin's motives for psychosocial consultation: Oncology social workers' perceptions of 54 next of kin cases2019In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 28, no 1, p. 154-159Article in journal (Refereed)
    Abstract [en]

    Objective: Although oncology social workers (OSWs) have emerged as a core profession in the provision of psychosocial services, there is a lack of empirical studies that describe their daily clinical work with next of kin (NOK). The overall aim of this study was to explore NOK's motives for consulting an OSW. This can provide us with insights into what types of skills OSWs need to have in order to fulfil their duties.

    Methods: From a nationwide survey, we used data from 54 NOK cases that Swedish OSWs met face to face.

    Results: About half of the motives concerned help in dealing with personal grief connected to the patients' cancer and distressing symptoms, while the other half concerned needs for help in dealing with the position of being the NOK, relationship conflicts, and assistance with socio‐economic issues.

    Conclusions: The motives show that NOK does not just ask for help to come to terms with distress related to the patient's situation. Based on the diversity of motives, we suggest that OSWs (at least in Sweden) need a broad education in counselling psychology. Furthermore, health care personnel need to be attentive to the NOK's own voice and not reduce it to the voice of the patient and the patient's needs in referrals.

  • 13.
    Isaksson, Joakim
    et al.
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Lilliehorn, Sara
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    The role and function of Swedish oncology social workers2017In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 26, p. 67-67, article id 271Article in journal (Other academic)
  • 14.
    Isaksson, Joakim
    et al.
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Granström, Brith
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Otorhinolaryngology.
    Laurell, Göran
    Uppsala universitet, Institutionen för klinisk vetenskap, Öron- näs- och halssjukdomar.
    Critical incidents reveal how patients with head and neck cancer construct their 'secure base' as a 'helping system'2014In: Journal of psychosocial oncology, ISSN 0734-7332, E-ISSN 1540-7586, Vol. 32, no 3, p. 322-341Article in journal (Refereed)
    Abstract [en]

    Most studies of the psychosocial needs of patients with head and neck cancers' (HNC) use predefined categories and explicitly ask for specified needs. These studies are important but should be complemented with inductive studies based on patients' own descriptions of experiences. The present qualitative study is such a contribution. In repeated interviews positive and negative incidents were collected from 137 patients with HNC, and these experiences were categorized in dimensions expressing needs. A core category - 'being included - neglected by a helping system' - emerged from the narrated incidents and it was based on the dimensions 'engagement', 'competence' and 'information'. The findings are easily related to attachment theory by stressing the significance of establishing trustful relationships with the health care staff, as attachment figures, who respond flexibly and sensitively to the patient's needs. In the constitution of health care as a helping system, all encounters between the patient and health care staff matters. Further research should preferably focus on the creation of guidelines for the constitution of health care as a helping system, i.e. how the found factors of a helping system can be operationalized in clinical practice.

  • 15.
    Isaksson, Joakim
    et al.
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Granström, Brith
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Otorhinolaryngology.
    Laurell, Göran
    Uppsala universitet, Institutionen för kirurgiska vetenskaper, Öron-, näs- och halssjukdomar.
    Patients with head and neck cancer narrate the importance of being included in a helping system2013In: Psycho-Oncology: Abstracts of the IPOS 15th World Congress of Psycho-Oncology, 4–8 November 2013, Rotterdam, The Netherlands, John Wiley & Sons, 2013, p. 63-63Conference paper (Refereed)
  • 16.
    Isaksson, Joakim
    et al.
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Lilliehorn, Sara
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Laurell, Göran
    Different transitions in returning to everyday life for patients with head and neck cancer: a qualitative prospective study2016In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 25, no SP. S3, p. 95-95Article in journal (Other academic)
  • 17.
    Isaksson, Joakim
    et al.
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Lilliehorn, Sara
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Laurell, Göran
    Institutionen för kirurgiska vetenskaper, Öron-, näs- och halssjukdomar, Uppsala universitet.
    Living an everyday life with head and neck cancer 2-2.5 years post-diagnosis: a qualitative prospective study of 56 patients2016In: Social Science and Medicine, ISSN 0277-9536, E-ISSN 1873-5347, Vol. 154, p. 54-61Article in journal (Refereed)
    Abstract [en]

    Rationale: There are many studies available describing how patients are affected by head and neck cancer (HNC) and its treatment. Usually these studies are quantitative and focus on assessing patients' quality of life or distress post-treatment. These studies are important, but they are of limited value if we are interested in understanding more about HNC in an everyday life context.

    Objective: The purpose was to determine how life was lived and valued during and after treatment for HNC and to detect different transitions in returning to everyday life.

    Methods: During 2009-2012, 56 patients with HNC were consecutively included, and interviewed at 6, 12, and 24 months post-treatment about how they lived their lives. All patients received primary treatment at a tertiary referral university hospital in Sweden.

    Results: Four different trajectories and transitions emerged. The first group (n=15) evalutated their illness experience as a past parenthesis in their life suggesting that they had psychologically left the illness behind. In the second group (n=9), the impact of the disease seemed to be diluted by other strains in their life, and although these patients to some extent were still hampered by side effects, they regarded them as 'no big deal'. The cancer really made a difference in the third group (n=12) in both positive and negative ways and seemed to reflect a balance between such effects. In the fourth group (n=20), the physical and/or psychological problems predominated and the patients' lives had changed for the worse.

    Conclusion: The narratives showed that being afflicted by HNC has different impacts depending on how the patients live their lives – it is a matter of individual transition in an everyday life context. This idiosyncracy challenges the meaningfulness of screening efforts to identify vulnerable groups for psychosocial intervention.

  • 18.
    Lilliehorn, Sara
    et al.
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Social Sciences, Umeå Centre for Gender Studies (UCGS).
    Hamberg, Katarina
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine. Umeå University, Faculty of Social Sciences, Umeå Centre for Gender Studies (UCGS).
    Kero, Anneli
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Admission into a helping plan: a watershed between positive and negative experiences in breast cancer2010In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 19, no 8, p. 806-813Article in journal (Refereed)
    Abstract [en]

    Cancer patients are in an exposed situation that raises certain psychosocial needs in contact with health care. Previous studies have mainly investigated these needs by assessments on predefined categories.Objective: The purpose of the present study is, from the patients' perspective, to identify breast cancer patients' psychosocial needs, and to synthesise them in a model reflecting the core of these needs.Methods: Seventy-one patients treated with radition therapy were consecutively included and repeatedly interviewed about their experiences of health care. 'Critical incidents' where identified from the interviews and analysed due to the similarities-differences technique in grounded theory.Results: Four categories of needs where detected: 'access', 'information', 'treatment', and 'how approached'. These categories and their properties merged into a core category - 'admission into a helping plan'. These findings are well understood in terms of attachment theory. In times of immanent danger and stress people strive to fina a 'safe haven' to attach to. Cancer patients' 'safe haven' can be described as 'a helping plan'. It is not the result of a separate patient-caregiver relationship but is created by a pattern of individual experiences from all kind of contacts with the health-care system as a whole.Conclusions: The presented model of patients needs as converging into 'admission into a helping plan' may serve as an easily comprehendible model for caregivers, guiding them to contribute to the patient's feeling of security and trust, and thus to the patient's own 'hoope work'.

  • 19.
    Lilliehorn, Sara
    et al.
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Hamberg, Katarina
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Kero, Anneli
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Breast cancer experience through the body: A consecutive, six-year longitudinal study of 24 womenManuscript (preprint) (Other academic)
  • 20.
    Lilliehorn, Sara
    et al.
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Social Sciences, Umeå Centre for Gender Studies (UCGS).
    Hamberg, Katarina
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine. Umeå University, Faculty of Social Sciences, Umeå Centre for Gender Studies (UCGS).
    Kero, Anneli
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Critical incidents in contact with healthcare reflecting the needs of women with breast cancer2008In: Psycho-Oncology, 2008, p. S10-Conference paper (Other academic)
  • 21.
    Lilliehorn, Sara
    et al.
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Social Sciences, Umeå Centre for Gender Studies (UCGS).
    Hamberg, Katarina
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine. Umeå University, Faculty of Social Sciences, Umeå Centre for Gender Studies (UCGS).
    Kero, Anneli
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Meaning of work and the returning process after breast cancer: a longitudinal study of 56 women2013In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 27, no 2, p. 267-274Article in journal (Refereed)
    Abstract [en]

    Background: An increasing number of women survive breast cancer and a majority return to work. However, findings based on mean values may conceal individual processes that need to be better understood to discuss meaningful rehabilitation.

    Aim: The purpose of this paper is to describe the sick-leave pattern of a group of Swedish women with primary breast cancer but foremost to explore their ideas about what motivates and discourages their return to work.

    Method: Fifty-six women were repeatedly interviewed over a period of 18 to 24 months. Interview sections that clearly illustrated the women’s experiences and ideas about work were categorized using the comparative similarities-differences technique.

    Findings: The average length of sick leave was 410 days (range 0-942). Six months after the first day of sick leave, 29% worked at least their previous service grade. At 12 months, 55%, and at 18 months 57% did so. Those treated with chemotherapy had in average more than twice as large sick leave as those who did not. Three categories emerged. ‘Motives for not returning to work’ consists of four sub-categories: ‘I’m still too fragile to return to work’; ‘My workplace is a discouraging place’; ‘I took an opportunity to pause’ and ‘I’ve lost the taste for work’. ‘Motives for returning’ consists of two sub-categories: ‘Work generates and structures my everyday life’ and ‘I miss my workplace’. Finally, ‘Transition in work approach’ reflects a changed approach to work.

    Conclusion: The meaning of work varies over time, but first and foremost work was regarded as an important part of the healing process as it restores the disruption of everyday life. Guidelines cannot be reduced to a linear relationship with biomedical variables but the individual context of everyday life must be considered.

  • 22.
    Lilliehorn, Sara
    et al.
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Radiation Sciences.
    Isaksson, Joakim
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Social work in oncology: an empirical study of patient contacts during a 12‐month period2017In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 26, p. 66-67, article id 645Article in journal (Refereed)
  • 23.
    Lilliehorn, Sara
    et al.
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Isaksson, Joakim
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Two sides of the same coin: Oncology social workers’ experiences of their working life and its pros and cons2023In: Nordic Social Work Research, ISSN 2156-857X, E-ISSN 2156-8588, Vol. 13, no 2, p. 267-279Article in journal (Refereed)
    Abstract [en]

    From the literature we learn that social workers in health care are exposed to different stressors connected to the risk for the development of burnout or traumatization. However, there is a lack of studies that focuses on the social workers’ own narratives on the burdensome, but also the rewarding aspects, of social work in health care. This study focuses on social work in oncology. Thematically structured qualitative interviews were conducted in a narrative form with 20 oncology social workers, half of whom were less experienced and half of whom were more experienced and with additional training in psychotherapy. The interviews focused on ‘pros and cons of practicing social work’ and the results were categorized by means of the similarities-differences technique. The burdensome cons concerned ‘Organizational and professional barriers’ and ‘Demanding cases’, with the latter divided into ‘Impasse because of hopelessness’ and ‘Impasse because of helplessness’. The rewarding pros categories all concerned meaningfulness including ‘Organizational meaningfulness’, ‘Meaningfulness from giving’, ‘Meaningfulness from receiving’, and ‘Meaningfulness from personal development’. Our findings indicate that the burdensome and rewarding aspects are two sides of the same coin. They are interconnected in the sense that the strain and challenge of being in situations of psychological despair also imply emotional satisfaction due to an experience of meaningfulness.

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  • 24.
    Lilliehorn, Sara
    et al.
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Isaksson, Joakim
    Stockholms universitet, Institutionen för socialt arbete, Department of social work.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    What does an oncology social worker deal with in patient consultations?: An empirical study2019In: Social work in health care, ISSN 0098-1389, E-ISSN 1541-034X, Vol. 58, no 5, p. 494-508Article in journal (Refereed)
    Abstract [en]

    The oncology social worker is a core profession in the psycho- social care of cancer patients, and has been scrutinised accord- ing to its role, function, and delivery of care, primarily from an Anglo-Saxon perspective. There is, however, a lack of studies outside this context, and empirical studies based on individual data. This study is a contribution by exploring the variability in clinical practice from a Swedish perspective. It is based on documentation from one oncology social worker’s (OSW’s) patient contacts over the course of one year. The essence of the majority of contacts was counseling and the patients dis- played a wide variety of motives for seeing an OSW. The function of the OSW is thus multifaceted, and the findings suggest that the OSW, in addition to guiding patients in social legislation issues, also should be prepared to act as an anchor in an acute crisis, contain despair in different phases of the trajectory, and facilitate the ‘carrying on as before’ or finding a ‘new normal’. The paper discusses the importance of the OSW being acquainted with different counseling/psychother- apy perspectives in the illness context, but primarily the impor- tance of having the ability to establish a ‘working alliance’ with their patients.

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  • 25.
    Lilliehorn, Sara
    et al.
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Social Sciences, Umeå Centre for Gender Studies (UCGS).
    Kero, Anneli
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Hamberg, Katarina
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Breast Cancer Experience Through the Body: A Consecutive, Six-Year Longitudinal Study of 24 Women2013In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 22, p. 334-334Article in journal (Other academic)
    Abstract [en]

    BACKGROUND: Breast cancer is a disruptive s bodies in body experiences in a life context are not sufficiently acknowledged in breast cancer research. Due to the increasing number of breast cancer survivors, longitudinal studies that pay attention to long-term experiences of the body are of vital importance in order to gain knowledge valuable for rehabilitation initiatives. This study is a contribution.

    four women were consecutively included in a prospective project and repeatedly interviewed during 6 years from ending hospitalised treatment. The qualitative analysis was made by means of thematic narrative analysis. Out of the interviews individual narratives were constructed s body experience over time. The narratives were repeatedly read to identify possible common thematic elements across participants of how the body appeared to the women and to discern processes of how this developed over time. Three main processes were found in the analysis.

    RESULTS: Common to all women was to initially experience the body as surviving. Survival was key target and bodily complaints were thus measured and valued in favour of that. When back to a new everyday life after treatment five women quickly experienced their bodies as comprehensible. They had undergone a minimum of treatments. 19 women reported more complaints and experienced the body as broken, fragile and as incomprehensible. With time and regained function most came to experience their bodies as comprehensible. Three women, however, met with more bodily decline than they could reconcile, they eventually disassociated from their bodies.

    CONCLUSIONS: This study makes a unique contribution by mapping out how breast cancer patients experience and value their bodies over 6 years from ending hospitalised treatment. The findings are considered from a phenomenological perspective and reflect how the women “discovered” and handled their bodies as something they had, the bodies were seen as separated from themselves while altering and changing due to side effects. The processes of establishing liveable body relations differed depending on treatment impact and ability to incorporate body changes as part of themselves. The findings are discussed in relation to theories of bodynormativity and biographical continuity.

    RESEARCH IMPLICATIONS: The study clarifies that experiences and valuations of body alterations and side effects shifts over time. It indicates the importance of further studies to carefully consider this transition over time and interpret selfassessments of body experience in relation to treatment (on-going/completed) and overall life context (on sick-leave/working).

    CLINICAL IMPLICATIONS: This study highlights the impact of side effects, especially from endocrine treatment, on breast cancer patients’ everyday life. We find it reasonable to suggest that physicians take a quite humble stand when discussing the treatment options. In cases of massive side effects, it must be possible to end treatment without this causing excessive worries for disease progression.

  • 26.
    Lilliehorn, Sara
    et al.
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Living at a residency away from home during radiotherapy as narrated by 52 patients with breast cancer: a cage of safety and discomfort2018In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 40, no 4, p. 450-456Article in journal (Refereed)
    Abstract [en]

    Purpose: In the Nordic countries many patients with cancer conclude their treatment with 5–6 weeks of radiotherapy while staying at a residency far away from home. The experience of this stay, from a rehabilitation perspective, has not previously been studied.

    Method: Fifty-two women with breast cancer were followed with repeated thematic interviews from diagnosis up to 2 years.

    Results: The majority of women saw both pros and cons with their stay, and overall the stay could be described as “A cage of safety and discomfort”. Pros included “Safety”, “Closeness and learning”, and “Feeling like being on holiday”, while cons included “An intruding self-image”, “Isolation and increased vulnerability”, and “A loss of function”. Some patients supported their own rehabilitation by socializing with their “fellow sisters”, while others isolated themselves and mainly found it burdensome to be there.

    Conclusions: The residence becomes an interactional field with the potential to facilitate patients in resuming a new everyday life. The women who do not interact with others and/or who are stuck with feelings of anxiety should be offered the opportunity to take part in a group exclusively for “fellow sisters” in a similar situation.

  • 27.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    A specialist nurse function for spouses to brain tumour patients: An action research study2006In: IPOS VIII 20-22 okt 2006, 2006Conference paper (Refereed)
  • 28.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Attributions of lung cancer: my own illness is hardly caused by smoking2007In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 16, no 6, p. 587-592Article in journal (Refereed)
    Abstract [en]

    People experiencing unexpected negative events tend to make sense of the situation through causal attributions. It seems that having some sort of answer to “why-me” makes the event less shattering and the world more controllable. We know for instance that the great majority of women with breast cancer tend to have clear ideas about its causes. Lung cancer, in contrast to breast cancer, has a well-known significant cause, as smoking explains about 80% of the incidence. This paper deals with the attribution process in lung cancer. It examines how lung cancer patients attribute the cause to their disease and how this relates to an understanding of how people deal with strain. Twenty-three patients with advanced non-small-cell lung cancer were consecutively followed by means of repeated interviews throughout the course of the disease. It emerged that among the smokers the most common attribution was “don’t know” – smoking was not seen as the prime cause to their cancer. This finding is discussed in relation to the few earlier somewhat contradictory studies that exist and it is argued that the finding is according well with the concept of ‘disavowal’ being the central process concerned in dealing with strain.

  • 29.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Cancer and ‘playing’ with reality: clinical guidance with the help of the intermediate area and disavowal2012In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 51, no 4, p. 541-560Article in journal (Refereed)
  • 30.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Cancer: primära hjärntumörer2011In: Kognitiv medicin / [ed] Wahlund L-O, Nilsson C, Wallin A, Stockholm: Norstedts , 2011, 1, p. 302-308Chapter in book (Other academic)
  • 31.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Communicating hope and vulnerability2007In: Psycho-Oncology, 2007, p. S3-Conference paper (Other academic)
  • 32.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Communication on hope and vulnerability2007In: Psycho-Oncology: Supplement, 2007, p. S3-Conference paper (Other academic)
  • 33.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Communication training in oncology needs a theoretical framework2019In: Annals of Oncology, ISSN 0923-7534, E-ISSN 1569-8041, Vol. 30, no 5, p. 853-853Article in journal (Refereed)
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  • 34.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Creating "denial" typologies is ontologically questionable2011In: Lung Cancer, ISSN 0169-5002, E-ISSN 1872-8332, Vol. 71, no 3, p. 372-373Article in journal (Refereed)
  • 35.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Does advocating screening for distress in cancer rest more on ideology than on science?2017In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 100, no 5, p. 858-860Article in journal (Refereed)
  • 36.
    Salander, Pär
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Everyday life as a bridge over troubled water2016In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 25, no 3, p. 347-348Article in journal (Refereed)
  • 37.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Facilitating interventions and/or relationships in malignant brain tumors2010In: Advances in Therapy, ISSN 0741-238X, E-ISSN 1865-8652, Vol. 27, no 1, p. 17-27Article, review/survey (Refereed)
  • 38.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Facilitating patient's hope work through relationship: a critique of the discourse of autonomy2010In: Configuring health consumers: health work and the imperative of personal responsibility / [ed] Roma M Harris, C Nadine Wathen, Sally Wyatt, Basinstoke, GB: Palgrave Macmillan , 2010, p. 113-126Chapter in book (Other academic)
  • 39.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Giving Nicknames to Colleagues Does not Belong to Ethics in the Scientific Community2013In: Archive for the Psychology of Religion/ Archiv für Religionspsychologie, ISSN 0084-6724, E-ISSN 1573-6121, Vol. 35, no 1, p. 147-148Article in journal (Refereed)
  • 40.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Hjärntumörer: psykologiska och sociala perspektiv2006In: Onkologi i Sverige, no 5, p. 40-42Article in journal (Other academic)
  • 41.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Including physiological variables in studies might confuse more than clarify2014In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 94, no 1, p. 140-140Article in journal (Other academic)
  • 42.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    "Increasing value and reducing waste” in psychosocial research demands more efforts in scrutinizing study designs2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 12, p. 1439-1440Article in journal (Refereed)
  • 43.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Introduction: A critical discussion on the concept of spirituality in research on health2015In: Coping with cancer in Sweden: a search for meaning / [ed] Fereshteh Ahmadi, Uppsala: Uppsala University Library , 2015, p. 13-27Chapter in book (Refereed)
  • 44.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    It's futile to believe that RCT studies will steer us to Godot2011In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 20, no 3, p. 333-334Article in journal (Refereed)
  • 45.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Kejsarens nya kläder: "Spirituality" - ett begrepp byggt på tveksam världsbild och cirkulära fynd2013In: Svensk Palliativ Tidskrift, ISSN 2001-5534, no 1, p. 26-28Article in journal (Other academic)
  • 46.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Motives that cancer patients in oncological care have for consulting a psychologist: an empirical study2010In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 19, no 3, p. 248-254Article in journal (Refereed)
    Abstract [en]

     Objective: Most people with cancer are able to deal with the mental turmoil with support from ordinary health care, family and friends. However, by themselves or by attentive health-care workers some patients are referred to specialists within the psychosocial field, foremost social workers and psychologists. This paper deals with patients’ motives for seeing a psychologist. Methods: The case books for all patients who had met with the psychologist at a department of oncology in Sweden during a 10-year period were read through and categorised according to what the patients wanted to talk about. Results: The most commonly found motives were in sliding order: coping with anxiety and worries caused by the disease; dealing with relational problems in life outside the disease; dealing with relational problems actualised by the disease; living with a malignant diseasedespair in a new life situation; and finally dealing with a particular problem. Conclusion: Patients seeing a psychologist in oncology do not just ask for help to come to terms with anxiety and worries. More than a third of the patients wanted to talk about distressing relationships, which were not connected to, or only remotely connected to the cancer disease. Patients have different needs and competence in different psychological treatment perspectives is therefore important. The found diversity of motives bears impact on the external validity of screening instruments for distress and randomised controlled intervention studies.

  • 47.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Patients with cancer react differently - Training in breaking bad news can therefore not be reduced to learning pre-defined behaviours2017In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 100, no 10, p. 1955-1956Article in journal (Refereed)
  • 48.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Patients with cancer react differently: training in breaking bad news can therefore not be reduced to learning pre-defined behaviours2017In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 100, no 10, p. 1955-1956Article in journal (Other academic)
  • 49.
    Salander, Pär
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Psykologiska perspektiv vid hjärntumörssjukdom2006In: Onkologi i Sverige, ISSN 1653-1582, no 5, p. 40-42Article in journal (Other (popular science, discussion, etc.))
  • 50.
    Salander, Pär
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Qualities in the short life: psychological studies relevant to patient and spouse in malignant glioma1996Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    This thesis deals with psychological issues concerning patients with malignant gliomas, and their spouses. There is no known medical cure, and the patients have a limited survival expectancy. Therefore studies evaluating new treatment modes, an overall supportive atmosphere, and attempts to avoid imposing unnessesary strain are necessary.

    Thirty consecutive patients with astrocytomas, grade III-IV, were included in a clinical trial with estramustine phosphate in addition to conventional treatment with surgery and radiotherapy. Both the patients and their spouses participated in the present study which aimed at a deeper understanding of the psychological processes relevant to their situation. By means of repeated thematically structured interviews, patients and spouses were followed separately during the entire course of the disease process. In addition to these interviews, all patients were assessed with a mini-mental examination, and five-month survivors were tested with a comprehensive neuropsychological battery. Questionnaires on reaction to the diagnosis and assessing psychosocial well-being were also administered to the patients.

    The interviews were analysed with grounded theory methodology and the findings were juxtaposed to concepts in psychoanalysis and coping theory. The main finding was that the patients, despite or owing to their severe medical situations, showed a marked capacity to create protection and hope. By means of biased perception they created an 'illusion' that palliated their strain. This finding is related to object-relational psychoanalysis with obvious implications for the crucial discussion on telling bad news. Another finding was that the spouses displayed different crisis trajectories depending on the overall status of their partners. Different senses of the relationship were related to different modes of coping. Especially spouses to patients with personality changes were put under severe strain and ought to be acknowledged by medical staff. Patients with no obvious deficits five months after termination of primary treatment nevertheless evidenced, at neuropsychological testing, a pronounced deficiancy in long-term memory, but no clear impairment in global intellectual capacities. Estramustine phosphate was found to have a negative impact on sexuality and might be one causative agent behind the decline in long-term memory, but these adversive effects did not seem to affect psychosocial well-being. The selective reminding technique proved to be sensitive in detecting deficits and is recommended in future clinical trials affecting the CNS.

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