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  • 1.
    Högström, Ebba
    et al.
    Blekinge Tekniska Högskola.
    Markström, Urban
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Berglund Snodgrass, Lina
    Blekinge Tekniska Högskola.
    Fjellfeldt, Maria
    Högskolan Dalarna.
    Andersén, Jimmie
    Blekinge Tekniska Högskola.
    Lilliehorn, Sara
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Boende och livsmiljö för personer med psykisk ohälsa: en forskningsrapport om stödinsatser, samarbete över förvaltningsgränser och bostadsförsörjning2021Report (Other academic)
    Abstract [sv]

    I denna rapport har vi redovisat den första delen av två i det tvärvetenskapliga forskningsprojektet LEX-projektet. Hållbara livsmiljöer för psykiskt funktionshindrade. Att integrera bostadsplanering och välfärdsservice genom nya kollaborativa praktiker.  

    Vår utgångspunkt var att ta reda på mer om vad som kännetecknar stödinsatser riktade till människor med psykisk funktionsnedsättning och hur dessa organiseras, samt undersöka tvärsektoriell samverkan i fråga om planering för bostadsförsörjning och inkluderande livsmiljöer. 

    Vårt material visar att målgruppen för boende- och stödinsatser har förändrats. Personer med funktionsnedsättningar till följd långvarig psykossjukdom utgör fortfarande en central grupp, ofta med behov av insatser med hög servicenivå. Målgruppen för insatserna är dock stadd i förändring och detta har i några kommuner medfört en utveckling mot en mer generell organisation för stödinsatserna utan specialistfunktioner. Boendeinsatser beslutade i enlighet med SoL dominerar men en blandning av förhållningssätt kan ses, från enskilda undantag där LSS tillämpas till en kommun där alla beslut om bostad med särskild service tas enligt LSS. När det gäller verksamhetstyperna för stödinsatser dominerar det traditionella gruppboendet och boendestödet. Vissa menar att gruppboendet som typ kommer på sikt att försvinna, och bland verksamhetsansvariga finns det en samsyn att fältet i stort är på väg mot en inriktning att arbeta i riktning mot ökad självständighet och autonomi för brukarna inom verksamheterna. 

    Hur socialtjänst och samhällsbyggnadsförvaltningar arbetar tillsammans med frågor som berör målgruppen skiljer sig åt mellan kommunerna. Arbetet organiseras ibland i nätverk, ibland handlar det om koordinering, i vissa fall samarbete eller samverkan vilket gör att den gemensamma spelplanen ser tämligen olika ut. I en del kommuner finns det fora för kontinuerligt gemensamt arbete, i andra anses det inte behövas alls. Hur möten mellan de båda förvaltningarna organiseras, på vems initiativ och ansvar hanteras på olika sätt. Det är en komplex bild som träder fram där frågor förs fram i olika instanser och på olika nivåer inom den egna förvaltningen såväl som mellan förvaltningarna.  

    När det gäller det kommunala bostadsförsörjningsansvaret är arbetet med att ta fram bostadsförsörjningsprogrammet en viktig del. Tjänstepersoner från olika förvaltningar engageras på olika sätt i detta arbete, från samordning och koordinering till långsiktiga strategiska samarbeten. Olika typer av roller utvecklas, som initiativtagare, informationsgivare, expert eller språkrör med olika handlingsutrymmen.Socialtjänstens erfarenhetsbaserade kunskap om rådande situation för olika grupper tas inte alltid i bruk. Att frågan är politisk känslig och hellre förs fram som en bred målsättning om ’bostad för alla’ utan tydligare konkretisering framträder i materialet.  

    De kommunala strategierna kring lokalisering av bostäder med särskild service handlar om omvandling av befintliga lokaler, bygga nya boenden i redan uppbyggda bostadsområden samt planering för nya boenden i stadsutvecklingsprocesser. Det övergripande mönstret för lokaliseringen av boenden är i bostadsområden men i utkanten, en kompromiss mellan socialförvaltningens idéer om social inkludering och samhällsbyggnadsförvaltningarnas tankar om integritet. Brukarnas möjligheter att skaffa sig positiva grannkontakter kan dock försvåras av sådana perifera lokaliseringar. 

    Vad en inkluderande, ‘god’, livsmiljö skulle kunna vara för personer med psykisk funktionsnedsättning visar sig vara en ny frågeställning för våra informanter. Flera informanter från socialtjänsten inte tidigare funderat över hur boenden och sysselsättning förhåller sig till varandra geografiskt och på vilket sätt det påverkar upplevelser av livsmiljön. Att frågan om inkluderande livsmiljöer för vår målgrupp skulle kunna ses som en del i den bredare samhällsplaneringen var inte självklart för samhällsplanerarna. Det framkom också att det är svårare för kommunen att ställa krav på de som bygger boenden med särskild service och andra liknande omsorgsboenden än när det gäller kommunhus, bibliotek eller simhallar, något som avspeglas i lokalisering och arkitektonisk kvalitet. 

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  • 2.
    Isaksson, Joakim
    et al.
    Institutionen för socialt arbete, Stockholms universitet, Stockholm, Sverige.
    Lilliehorn, Sara
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Kuratorn inom cancersjukvården2022In: Perspektiv på hälso- och sjukvårdskuratorns mångfacetterade arbete / [ed] Joakim Isaksson; Sara Lilliehorn; Helena Hansson, Lund: Studentlitteratur AB, 2022, 1, p. 171-191Chapter in book (Other academic)
  • 3.
    Isaksson, Joakim
    et al.
    Institutionen för socialt arbete, Stockholms universitet, Stockholm, Sverige.
    Lilliehorn, SaraUmeå University, Faculty of Social Sciences, Department of Social Work.Hansson, HelenaLunds universitet, Lund, Sverige.
    Perspektiv på hälso- och sjukvårdskuratorns mångfacetterade arbete2022Collection (editor) (Other academic)
  • 4.
    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.

  • 5.
    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.

  • 6.
    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.

  • 7.
    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)
  • 8.
    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)
  • 9.
    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.

  • 10.
    Kjellgren, Maria
    et al.
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Lilliehorn, Sara
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Markström, Urban
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Adolescents’ perspectives on SSWs’ counselling practice in Swedish elementary schools: "plumb the depths and navigate to shore"2024In: Journal of Children's Services, ISSN 1746-6660, E-ISSN 2042-8677, Vol. 19, no 1, p. 20-37Article in journal (Refereed)
    Abstract [en]

    Purpose: This study aims to gain a comprehensive understanding of adolescent’s experiences of individual school social work counselling in Swedish elementary schools.

    Design/methodology/approach: The study encompasses interviews with 16 adolescents about their experiences of individual counselling with school social workers (SSWs). The data was analysed using conventional content analysis.

    Findings: The main result was the adolescents’ desire “to navigate to shore” to speak freely about their whole lives with a professional SSW and find a “ safe haven,” […] where a trusting professional cared for and comforted them in counselling. The counselling contact contributed to increased knowledge about oneself. The results reveal the importance of the SSWs paying attention and listening to the adolescents’ narratives. The creation of a coherent life narrative enables to finally end counselling and “Cast off.”

    Originality/value: The results highlight the importance of Swedish SSWs focusing on individual counselling sessions with adolescents to provide a setting for growth.

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  • 11.
    Kjellgren, Maria
    et al.
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Lilliehorn, Sara
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Markström, Urban
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    School social work in sweden: Who are the children in counselling, and what support are they offered? a protocol study about individual counselling in elementary schools2023In: Child and Adolescent Social Work Journal, ISSN 0738-0151, E-ISSN 1573-2797Article in journal (Refereed)
    Abstract [en]

    The overall aim of the present study is to describe and explore the characteristics and content of school social worker’s (SSWs) individual counselling with children as these are imprinted in session protocols collected at Swedish elementary schools. Specific focus is placed on the character of the children’s concerns, the content of the SSW’s helping strategies, and challenges related to the alliance between the SSW and the children as experienced by the SSW. The study was based on data from a survey protocol of 20 SSW’s daily practice regarding their experiences in counselling children and adolescents. The data consisted of 193 protocols from the same number of unique individual sessions. Data were analysed through quantitative descriptive statistics. The data also contained a large proportion of open-ended textual answers, which were analysed through a qualitative summative content analysis. The counselling strategies were primarily divided into three parts, namely coaching, processing, and assessing. The most common practice elements used included elements of empowerment, alliance and relationship, and hope and trust. In counselling children, SSWs identified a broad range of problems in children’s overall lives. Many children suffered from their home situations, which also impinged upon the SSWs, who were affected by the children’s life narrative. Our results can help inform SSW policy and practices as SSWs assist vulnerable children through individual counselling that corresponds to their help-seeking behaviour and by offering a space for alliances and relationships.

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  • 12.
    Kjellgren, Maria
    et al.
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Lilliehorn, Sara
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Markström, Urban
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    The counselling practice of school social workers in Swedish elementary schools. A focus group study2022In: Nordic Social Work Research, ISSN 2156-857X, E-ISSN 2156-8588Article in journal (Refereed)
    Abstract [en]

    This article describes the counselling practice of school social workers (SSWs) with individual children. The work of SSWs is mainly about helping children and adolescents who for various reasons suffer from mental ill-health, school absenteeism or stress that make them unable to achieve their intended goals. SSWs preferably meet these children in individual counselling sessions. The aim of this article is to describe and analyse SSWs’ experience of counselling with children and to examine the characteristics of counselling practice. The data collection was conducted through four semi-structured focus group interviews with a total of 22 SSWs in four different regions in Sweden. SSWs provide counselling to children in order to bring about improved feelings or behavioural changes. It can be noted that SSWs put emphasis on both the counselling process and the alliance with the child. The interviews showed a common practice among SSWs regarding the structure of the counselling sessions, with certain steps and approaches being employed. However, the specific interventions differed and were characterized by an eclectic standpoint in which SSWs utilize a broad repertoire of therapeutic schools and techniques. Furthermore, a relational perspective emerged as a most prominent focus for the SSWs by re-emerging throughout the material. We believe that SSWs could benefit from theoretical perspectives on ‘contextual model’ and ‘attachment theory’ as ‘models of the mind’. Being emotionally close to the child and being able to follow their development requires a lot from SSWs, as both professional caregivers and as ‘safe havens’.

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  • 13.
    Kjellgren, Maria
    et al.
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Lilliehorn, Sara
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Markström, Urban
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Therapist, Intermediary or Garbage Can? Examining Professional Challenges for School Social Work in Swedish Elementary Schools2023In: International Journal of School Social Work, E-ISSN 2161-4148, Vol. 8, no 1, article id 4Article in journal (Refereed)
    Abstract [en]

    The overall aim of this article is to describe and analyse critical components that influence the role and performance of school social workers in the Swedish elementary school. Special attention will be paid to aspects related to formal regulations, professional self-understanding, and SSWs’ role in the interplay between professional domains involved in elementary school.

    The data collection was conducted through four semi-structured qualitative focus group interviews with a total of 22 School Social Workers (SSWs) in four different regions in Sweden during the latter part of 2019.

    The results reveal three main challenges for the SSW: 1. To navigate in a pedagogic and medical arena within a multidisciplinary team, 2. To manage ambiguity without formal regulations and in unclear settings and leadership, and finally, 3. To negotiate tasks at different levels, with a health promotional and preventive focus. The SSW ends up, mainly, in remedial work with individual children. The results also disclose SSWs hold a vague professional self-understanding position with little formal mandate to perform their work. We suggest that national guidelines for SSWs be developed, and that a common base of knowledge and education be established.

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  • 14.
    Lilliehorn, Sara
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Social Sciences, Umeå Centre for Gender Studies (UCGS).
    Betydelser av bröstcancer i ett livssammanhang2013Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The aim of the thesis is to describe and analyse how a group of women experience that their every-day lives are affected during and after primary breast cancer treatment. The thesis is a consecutive, longitudinal study that takes an explorative qualitative approach. Seventy-one women younger than 60 years of age with primary breast cancer were consecutively included in the study. The women were interviewed four or five times over a period of 4 to 6 years from end of radiotherapy. The analyses of the interviews were inspired by grounded theory and narrative analysis. 

    The thesis encompasses four papers. Paper I focused on the women’s contact with health care. The results of this study indicate that it is crucial for patients in a vulnerable situation to be admitted into a supportive system – ‘admitted into a helping plan’ – that, more or less explicitly, displays a well-thought-out plan of care. This is a process built on individual relationships with members of the health-care staff, but it ends up in a relationship to health care as a helping system, a ‘safe haven’ to attach to. Study II explored the women’s ideas about what motivated and discouraged their return to work. The results illustrate that the meaning of work fluctuates over time and that the processes of returning to work are conditioned by the patients’ individual life situations. Returning to work was regarded as an important part of the healing process because of how it generated and structured the women’s everyday lives. Returning to work meant demonstrating well-being and normalcy after breast cancer. Study III examined how life was lived and valued during and after treatment for breast cancer compared to pre-cancer life. The analysis showed that being afflicted with breast cancer was evaluated from a context of the women’s former everyday lives and stressed that how the women experienced breast cancer was a matter of personal circumstances. Study IV focused on how the women experienced and dealt with their altered bodies. The results showed that the women followed three different body-mind trajectories that depended to a significant extent on the severity of side effects and bodily alterations that resulted from their treatments.

    Being afflicted by breast cancer implies vulnerability and losses, but it can also involve benefits and provide new perspectives on life. How the overall breast cancer experience is valued seems to be very much a matter of circumstances in everyday life. This thesis highlights circumstances that focus in particular on contacts with health care, the body, the work situation, and the family situation. 

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    Betydelser av bröstcancer i ett livssammanhang
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  • 15.
    Lilliehorn, Sara
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Vardagsliv vid bröstcancer – en fråga om omständigheter2014In: Onkologi i Sverige, ISSN 1653-1582, no 2, p. 5p. 49-52Article in journal (Other (popular science, discussion, etc.))
  • 16.
    Lilliehorn, Sara
    et al.
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Fjellfeldt, Maria
    Dalarna University, Sweden.
    Högström, Ebba
    Blekinge Institute of Technology, Sweden.
    Markström, Urban
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Contemporary accommodation services for people with psychiatric disabilities: the simple taxonomy for supported accommodation (STAX-SA) applied and discussed in a Swedish context2023In: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011, Vol. 25, no 1, p. 92-105Article in journal (Refereed)
    Abstract [en]

    This article focuses on the stock of accommodation service units for people with psychiatric disabilities in Sweden and the classification of supported accommodation. We examined 122 units in 12 municipalities in Sweden and classified them according to the Simple Taxonomy for Supported Accommodation (STAX-SA). We found an obvious variation in the field and a movement into a recovery-oriented direction and towards individuality. There is an emphasis on Move-On that seems to expand into and beyond floating outreach support, and there is a relaxation of service units’ boundaries concerning commitment and target groups. The correspondence to STAX-SA was quite low (48%), and the applicability to ‘real world’ services was not satisfactory. When capturing variation and change in a rich dataset, STAX-SA is too reductive. However, STAX-SA was a successful point of departure in the analysis that opened up for identifying diversities and movement. We suggest some adjustments to increase its applicability.

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  • 17.
    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'.

  • 18.
    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)
  • 19.
    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)
  • 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.
    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.

  • 21.
    Lilliehorn, Sara
    et al.
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Isaksson, Joakim
    Institutionen för socialt arbete, Stockholms universitet, Stockholm, Sverige.
    Hansson, Helena
    Lunds universitet, Lund, Sverige.
    Perspektiv på relationen patient–sjukvård2022In: Perspektiv på hälso- och sjukvårdskuratorns mångfacetterade arbete / [ed] Joakim Isaksson; Sara Lilliehorn; Helena Hansson, Lund: Studentlitteratur AB, 2022, 1, p. 21-36Chapter in book (Other academic)
  • 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.
    Markström, Urban
    et al.
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Näslund, Hilda
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Schön, Ulla-Karin
    Rosenberg, David
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Bejerholm, Ulrika
    Gustavsson, Anneli
    Jansson, Mårten
    Argentzell, Elisabeth
    Grim, Katarina
    Engdahl, Patrik
    Nouf-Latif, Faten
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Lilliehorn, Sara
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Svedberg, Petra
    Developing sustainable service user involvement practices in mental health services in Sweden: The "Userinvolve" research program protocol2023In: Frontiers in Psychiatry, E-ISSN 1664-0640, Vol. 14, article id 1282700Article in journal (Refereed)
    Abstract [en]

    Background: The purpose of this paper is to outline the protocol for the research program “UserInvolve,” with the aim of developing sustainable, service user involvement practices in mental health services in Sweden.

    Methods: This protocol outlines the knowledge gap and aim of the UserInvolve-program. It further provides an overview of the research infrastructure, with specific focus on the organization and management of the program as well as the design of the six underlying research projects. These six research projects form the core of the UserInvolve-program and will be carried out during a six-year period (2022–2027). The projects are focused on examining articulations of experiential knowledge in user collectives, on four specific user involvement interventions (shared decision-making, peer support, user-focused monitoring, and systemic involvement methods) and on developing theory and method on co-production in mental health research and practice.

    Results or conclusion: The knowledge gained through the co-production approach will be disseminated throughout the program years, targeting service users, welfare actors and the research community. Based on these research activities, our impact goals relate to strengthening the legitimacy of and methods for co-production in the mental health research and practice field.

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  • 28.
    Salander, Pär
    et al.
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Isaksson, Joakim
    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.
    A nationwide study of the function of the social worker in cancer care and rehabilitation: the present status and prospects for the future2016In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 25, no S3, p. 94-, article id 271Article in journal (Refereed)
    Abstract [en]

    The number of patients living with cancer as a chronic disease is increasing. This stresses the importance of efforts to facilitate for these persons to resume a new everyday life in work, family and leisure time. In Sweden, the social worker is the professional who more than other professionals in health care represents the psychosocial perspective in rehabilitation. However, the function of the social worker in cancer care is poorly studied. The purpose of the present study is therefore to explore the function of the social worker – its present status and future prospects. In March 2016, 299 questionnaires were distributed to the social workers in Sweden practicing at least half-time in oncology. The questionnaire covered background data as affiliation, position and collaboration in an organizational context, complementary education, main tasks, but also a detailed description of their last three clinical cases, i.e. initiative and motive/subject for contact in each case. In addition, we ask the social workers to evaluate their present work and to identify requirements for improved interventions. Analysis will be conducted with descriptive statistics as well as with continuous comparisons in grounded theory. The results will display a condensed description of the background variables characterizing this group of social workers, but it will first of all focus on their clinical function and the social workers' prospects for development of the function. The conclusions will be presented in terms of a typology of different roles as social workers combined with ideas about development of these roles.

  • 29.
    Salander, Pär
    et al.
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Isaksson, Joakim
    Institutionen för socialt arbete, Stockholms universitet.
    Lilliehorn, Sara
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    Kuratorsfunktionen i svensk cancersjukvård: en nationell genomlysning2018In: Omsorg: Nordisk tidsskrift for Palliativ Medisin, ISSN 0800-7489, no 3, p. 62-65Article in journal (Other academic)
    Abstract [sv]

    Socialarbetaren (kuratorn) är den profession som i svensk cancersjukvård specifikt står för det psykosociala perspektivet. Föreliggande studie analyserar kuratorns verksamhet med utgångspunkt i patienters motiv till att söka upp kurator. Utfallet ger vid handen att motiven inte i första hand är socioekonomiska eller juridiska, utan i stället psykologiska, och förtrogenhet med det councelling-orienterade samtalet är därför efterfrågat och centralt. Detta bör beaktas när man planerar för legitimation av kuratorer i hälso- och sjukvård.

  • 30.
    Salander, Pär
    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.
    To carry on as before: A meta-synthesis of qualitative studies in lung cancer2017In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 26, p. 81-82, article id P-002Article in journal (Other academic)
    Abstract [en]

    As a complement to quantitative studies, qualitative studies can give us a better understanding of how persons affected by lung cancer live their everyday lives and how they deal with the obvious strain of having lung cancer. Because qualitative studies are based on only a few participants in specific contexts, the purpose of the present study is to synthesize knowledge from these qualitative studies to get a more general picture of the everyday lives of patients with lung cancer. A search on PubMed, CINAHL, Medline, and PsychInfo yielded 383 hits. After exclusion, we found 16 studies that focused on how these patients lived, reflected, and dealt with their new life situation. These studies comprised 393 interviews with 283 patients with primary lung cancer, and the findings from these studies were synthesized into a core process with subcategories. The overarching process was that the patients were eager “to carry on as before.” They wanted to resume their former everyday life, and their views on their relationships with their bodies and side effects of treatments, their families, the health care staff, and with dying and death were very much related to how these could assist the core process. The synthesis presented here suggests that health care in consultations with patients with lung cancer should defer to the importance of the patient's core idea that life carries on despite the fact that it will probably soon come to an end.

  • 31.
    Salander, Pär
    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.
    To carry on as before: a meta-synthesis of qualitative studies in lung cancer2016In: Lung Cancer, ISSN 0169-5002, E-ISSN 1872-8332, Vol. 99, p. 88-93Article in journal (Refereed)
    Abstract [en]

    As a complement to quantitative studies, qualitative studies give us a better understanding of how persons affected by lung cancer live their everyday lives and how they deal with the obvious strain of having lung cancer. Because qualitative studies are based on only a few participants in specific contexts, the purpose of the present study is to synthesize knowledge from these qualitative studies to get a more general picture of the everyday lives of patients with lung cancer. A search on PubMed, CINAHL, Medline and PsychInfo yielded 383 hits. After exclusion we found 16 studies that focused on how these patients lived, reflected, and dealt with their new life situation. These studies comprised 393 interviews with 283 patients with primary lung cancer, and the findings from these studies were synthesized into a core process with subcategories. The overarching process was that the patients were eager "to carry on as before". They wanted to resume their former everyday life, and their views on their relationships with their bodies and side effects of treatments, their families, the health care staff, and with dying and death were very much related to how these could assist the core process. The synthesis presented here suggests that health care in consultations with patients with lung cancer should defer to the importance of the patient's core idea that life carries on despite the fact that it will probably soon come to an end.

  • 32.
    Salander, Pär
    et al.
    Umeå University, Faculty of Social Sciences, Department of Social Work. Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Lilliehorn, Sara
    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.
    Kero, Anneli
    Umeå University, Faculty of Social Sciences, Department of Social Work.
    The impact of breast cancer on living an everyday life 4.5-5 years post-diagnosis: a qualitative prospective study of 39 women2011In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 50, no 3, p. 399-407Article in journal (Refereed)
    Abstract [en]

    Background. The survival of women with breast cancer has improved. There are many studies available describing different aspects of how the illness and its treatment affect the women. Usually these studies are cross-sectional and focus on assessments of a sample of women at a single point in time during post-treatment. These studies are important but of limited value if we are interested in understanding more about breast cancer in a life context. The present study is a contribution.

    Methods. A consecutive sample of 39 women was followed up by means of repeated thematic interviews about how they lived their lives, from the end of radiation therapy to a point four years later, i.e. 4.5–5 years post diagnosis.

    Results. Four different groups of women emerged. Largely, the first group evaluated the cancer initiated transformation of their lives in a positive way. The breast cancer helped them depart from a career treadmill or to positive interpersonal experiences. In the second group the cancer and its treatment seemed to pass without marked traces. The cancer made a difference for the third group, but both in positive and negative ways. A different life perspective or improved relationships were weighted against troublesome side effects from treatment. Finally, in the fourth group a bodily decline due to side effects and other health problems was predominant and this obstructed their chances of living a good life.

    Discussion. The narratives showed that being diseased by breast cancer has different impacts depending on how the woman lives her life – it is very much a matter of transition in a life context. The results are furthermore discussed in relation to adaptation and coping theory.

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