Developing sustainable service user involvement practices in mental health services in Sweden: the "Userinvolve" research program protocol.

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.

What does an oncology social worker deal with in patient consultations? - An empirical study.

The oncology social worker is a core profession in the psychosocial care of cancer patients, and has been scrutinised according 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 displayed 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/psychotherapy perspectives in the illness context, but primarily the importance of having the ability to establish a 'working alliance' with their patients.

Next of kin's motives for psychosocial consultation-Oncology social workers' perceptions of 54 next of kin cases.

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.

Cancer patients' motives for psychosocial consultation-Oncology social workers' perceptions of 226 patient cases.

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 feelings 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 predict 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.

Living at a residency away from home during radiotherapy as narrated by 52 patients with breast cancer: a cage of safety and discomfort.

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. Implications for Rehabilitation Staying in accommodations together with other patients receiving daily radiotherapy for cancer for 5-6 weeks lends itself to personal interactions with a rehabilitative impact. Some patients take advantage of this possibility, which might facilitate the integration of the cancer experience into a new self-image. To some more vulnerable patients the stay at the patient hotel is burdensome, and these patients represent a target group for staff interventions aiming to facilitate their stay and their resumption of a new everyday life. A suggestion is that the specialist nurses meet with every patient after about a week in order to identify women who would benefit from psychosocial interventions.

A nationwide study of Swedish oncology social workers: Characteristics, clinical functions, and perceived barriers to optimal functioning.

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 counseling 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.

To carry on as before: A meta-synthesis of qualitative studies in lung cancer.

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.

Living an everyday life with head and neck cancer 2-2.5 years post-diagnosis - A qualitative prospective study of 56 patients.

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) evaluated 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 idiosyncrasy challenges the meaningfulness of screening efforts to identify vulnerable groups for psychosocial intervention.

Meaning of work and the returning process after breast cancer: a longitudinal study of 56 women.

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 study 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 18-24 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 subcategories: '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.

The impact of breast cancer on living an everyday life 4.5-5 years post-diagnosis - a qualitative prospective study of 39 women.

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.

'Admission into a helping plan': a watershed between positive and negative experiences in breast cancer.

UNLABELLED: 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 pre-defined 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 radiation 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 imminent danger and stress people strive to find 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 'hope work'.