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.

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.

Purpose: Cancer research and connected innovation processes often lack a major component; patient participation. We revisit three studies (a-c) in order to explore how Momentary contentment theory may be used to improve patient participation and psychosocial health. Method: We revisited data from the initial (a) classic grounded theory study on Momentary contentment, based on four years of observation and 14 interviews. It explains a way of dealing with life close to death and morbidity. In the imminence of danger the studied culture resembles the context of cancer patients. The two following studies used focus group interviews with (b) 19 cancer patients and (c) 17 relatives of cancer patients in southern Sweden. Results: We suggest a process where cancer patients are taught to be submissive and that the support they receive from health providers may be counterproductive to contentment; a patientification process. We present alternative ways for people to handle issues such as hope, waiting, knowledge gaps and healthcare navigation while living with cancer. We introduce an alternative to patientification and passive patients where active patients create their own safety and truly participates in their care.Conclusions: We propose clinical studies to introduce such a shift from patentification to co-creation of care.

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. 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. 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. 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.

This study reports the results of a university course aimed at exploring and improving cooperation in healthcare with both cancer survivors, loved ones and healthcare professionals as students. Central to the course was the understanding of and moving between each other's perspectives. Operating within a framework inspired by problem-based learning (PBL), small groups consisting of at least one cancer survivor, one loved one and one healthcare professional, collaboratively created scenarios based on their personal experiences. The students developed, elaborated, and identified problems and potential solutions. The pedagogical framing illustrated an empowering process of defining and elaborating a problem of their combined concerns, using their different knowledge. Although cooperation presented challenges, most students were able to explore and appreciate each other's perspectives when provided with a safe environment. Our experiences highlight the importance of both contextual safety and personal development as key factors in addressing power imbalances in healthcare.

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.