Purpose : In this qualitative interview study we investigated the experiences of family members to cancer patients. Our objective was to explore and to differentiate their needs from the needs of cancer patients. Methods : Five focus groups and six individual narrative interviews with 17 family members to cancer patients in Sweden were conducted and compared with 19 cancer patient interviews. Our analysis was inspired by classic grounded theory. Results : Family members to cancer patients expressed own morbidity connected to high stress levels and difficulties in recognizing own stress due to ongoing comparisons with the cancer patient. Family members were trapped in a momentary terror-like situation where they became their sick relative’s safety net. A percieved inability to improve their loved one’s well being contributed to a feeling of guilt. The longing for it all to end was encumbered with shame since the end included possible death. Conclusions : By recognizing cancer as a disease striking both body and relationships, family members are given precedence over their own struggles, differentiated from the patient’s experiences. We define differences in needs between cancer patients and family members. Family members to cancer patients may be supported in developing balancing strategies towards less stress, increased safety and moments of contentment.
Purpose: The technocratic and medicalized model of healthcare is rarely optimal for patients. By connecting two different studies we explore the possibilities of increasing quality of life in cancer care. Methods: The first study captures survival strategies in a historically isolated Arctic village in Norway resulting in Momentary contentment theory, which emerged from analysing four years of participant observation and interview data. The second study conceptualizes everyday life of cancer patients based on in-depth interviews with 19 cancer patients; this was conceptualized as Navigating a new life situation. Both studies used classic grounded theory methodology. The connection between the studies is based on a health design approach. Results: We found a fit between cancer patients challenging life conditions and harsh everyday life in an Arctic village. Death, treatments and dependence have become natural parts of life where the importance of creating spaces-of-moments and a Sense of Safety is imminent to well-being. While the cancer patients are in a new life situation, the Arctic people show a natural ability to handle uncertainties. Conclusion: By innovation theories connected to design thinking, Momentary contentment theory modified to fit cancer care would eventually be a way to improve cancer patients’ quality of life.
Background Cancer rehabilitation is central for helping patients and relatives create a functional everyday life based on the changes in life conditions. The needs are highly individual and include physical, mental, and social challenges. Cancer rehabilitation programs offer coping strategies, including guidelines on how to handle emotions. Objective This paper presents a participatory design activity where patients in cancer rehabilitation use a virtual smash room, which is a virtual environment where the user can break things, mainly porcelain or glass items such as vases or plates. The objective is to understand attitudes to, and some effects of, using this application, as well as eliciting ideas of other virtual environments that would be desired. Methods The virtual environment presented here, the virtual smash room, was designed at the request of a patient with cancer who wanted a tool for venting frustration. In this virtual environment, the user can break porcelain, vases, and plates. Patients participating in a week-long cancer rehabilitation program tested the virtual smash room and reported their experiences through a questionnaire. The questionnaire comprised three sections: (1) a subset of the Intrinsic Motivation Inventory (IMI), (2) a subset of the Virtual Reality Symptoms Questionnaire (VRSQ), and (3) a free-text response section. Results A total of 101 responses were gathered. The results from the IMI questions showed that the participants found the virtual experience enjoyable (mean 4.52, maximum 5, SD 0.73), and it helped them retain their focus (mean 4.44, maximum 5, SD 0.74). The VRSQ revealed that there were only minor symptoms related to general discomfort (5.9%, n=6), fatigue (5.9%, n=6), nausea (3.0%, n=3), and tired eyes (8.9%, n=9), while several participants experienced dizziness (22.8%, n=23). Since only postmeasurements were gathered, nothing could be concluded about the prevalence of these symptoms before testing. The free-text responses indicated that the user group had many ideas for other virtual environments to use in cancer rehabilitation. Conclusions This study presents a concept of using virtual reality in the cancer rehabilitation process and exemplifies activities of patient participation in the design process. Virtual reality has potential in being both distracting and enjoyable, while certain aspects of cybersickness might be especially important to consider for a user group already experiencing physical and mental issues. The results will act as input in the process of further designing virtual applications in digitally reinforced cancer rehabilitation.
Objective To explore how cancer could be diagnosed in a more timely way. Design Grounded theory analysis of primary care physicians’ free text survey responses to: ‘How do you think the speed of diagnosis of cancer in primary care could be improved?’. Secondary analysis of primary care physician interviews, survey responses, literature. Setting Primary care in 20 European Örenäs Research Group countries. Subjects Primary care physicians: 1352 survey respondents (2013-2016), 20 Spanish and 7 Swedish interviewees (2015–2019). Main outcome measures Conceptual explanation of how to improve timeliness of cancer diagnosis. Results Pluralistic task shifting is a grounded theory of a composite strategy. It includes task sharing – among nurses, physicians, nurse assistants, secretaries, and patients – and changing tasks with cancer screening when appropriate or cancer fast-tracks to accelerate cancer case finding. A pluralistic dialogue culture of comprehensive collaboration and task redistribution is required for effective pluralistic task shifting. Pluralistic task shifting relies on cognitive task shifting, which includes learning more about slow analytic reasoning and fast automatic thinking initiated by pattern recognition; and digital task shifting, which by use of eHealth and telemedicine bridges time and place and improves power symmetry between patients, caregivers, and clinicians. Financial task shifting that involves cost tracking followed by reallocation of funds is necessary for the restructuring and retraining required for successful pluralistic task shifting. A timely diagnosis reduces expensive investigations and waiting times. Also, late-stage cancers are costlier to treat than early-stage cancers. Timing is central to cancer diagnosis: not too early to avoid overdiagnosis, and never too late. Conclusions We present pluralistic task shifting as a conceptual summary of strategies needed to optimise the timeliness of cancer diagnosis. Key points Cancer diagnosis is under-researched in primary care, especially theoretically. Thus, inspired by classic grounded theory, we analysed and conceptualised the field: Pluralistic task shifting is a conceptual explanation of how the timeliness of cancer diagnosis could be improved, with data derived mostly from primary care physicians. This includes task sharing and changing tasks including screening and cancer fast-tracks to accelerate cancer case finding, and requires c...
ulrika sandén, hans thulesius och lars harrysson Nuets förnöjsamhetEn grundad teori om livsval och överlevnadsstrategier Contentment in the moment "Contentment in the moment" is a classic grounded theory exploring safety and contentment within a small community in northern Norway . The purpose of the study was to explore the village's everyday life from a participant's perspective and to develop an understanding of their living conditions . We found different survival strategies, which have their roots in the village's history of poverty, isolation and harsh climate . Today these strategies have changed from a matter of life and death to a modern psychosocial foundation of contentment . The study is based on four and a half years of observations, in-depth interviews and informal but focused conversations with people living in Polarfjorden . The data was analysed using the constant comparative method of classic grounded theory . In this article we further relate our work to more general sociological theory, more specifically to Charles Tilly's work on reason and routines .
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