Food plays a vital role in daily life, not only physically but also psychologically, socially, and existentially. People experiencing homelessness often face difficulties in accessing food. This study aimed to explore experiences of food and mealtimes among people experiencing homelessness using a qualitative descriptive design. Individual interviews were conducted with 15 participants recruited from an inpatient ward specializing in care for people living in homelessness. The data were analyzed using inductive qualitative content analysis, with an emphasis on remaining close to the participants' own descriptions. The findings provide insight into the different ways in which people experiencing homelessness manage their daily food strategies. Furthermore, how people perceive physical suffering related to hunger, but also on how support from aid organizations is experienced, and how moral boundaries may shift when the need for food becomes urgent. The intricate interplay between food insecurity, substance use, and social marginalization is explored. The study concludes that limited and unpredictable access to food has significant consequences for everyday life among people experiencing homelessness, underscoring the need for respectful and inclusive support systems within nursing practice and public policy.

OBJECTIVES: In home-based care for severely ill patients, family caregivers' contributions are crucial. This study aimed to explore how a web-based psychoeducational intervention influences family caregivers' experiences in addressing challenges while caring for a patient with life-threatening illnesses during specialized home care.

METHODS: This qualitative study undertook semi-structured interviews with family caregivers of patients with life-threatening illness receiving specialized home care. Family caregivers participated in a randomized controlled trial evaluating a psychoeducational intervention delivered through a website. Interviews were performed with 17 family caregivers; 13 spouses, 2 adult children, 1 parent, and 1 sibling, and analyzed using qualitative content analysis.

RESULTS: The results indicate that the intervention resonated with the family caregivers' situation which gave them comfort and awareness. It inspired self-reflection on the caregiver role that provided new insights and encouraged communication with the patient. The intervention prepared family caregivers for the patient's progressing illness and death. While preparing was a help for some, others did not feel ready to face this, which led them to avoid parts of the website.

SIGNIFICANCE OF RESULTS: This psychoeducational web-based intervention guided family caregivers as they addressed challenges in caregiving and prepared for the future, and they valued having access to such an intervention. In a time of decreasing healthcare resources, web-based support may be a useful alternative to in-person interventions. It is important to continue developing, evaluating, and implementing web-based interventions to meet the needs of family caregivers.

BACKGROUND: Life-threatening illness affects both patients and spouses, and spousal caregivers report high levels of distress. Web-based interventions could benefit spouses' and patients' needs and shared everyday life.

AIM: To explore how a family caregiver-targeted web-based psychoeducational intervention influences couples' experiences of sharing everyday life at home while facing life-threatening illness.

DESIGN: This qualitative sub-study involved dyadic interviews with couples (spouse-patient) where the spouse was allocated to the intervention arm of a randomized controlled trial evaluating a web-based family caregiver-targeted intervention. Data were analyzed using Interpretive description.

SETTING/PARTICIPANTS: Participants were recruited from five specialized home care services in Sweden. In total, 32 participants, spouses (n = 16) and patients (n = 16) were interviewed as couples after the spouse had accessed the intervention for 4 weeks.

RESULTS: Couples described how the spouses' access to the intervention had provided knowledge that enhanced the couple's understanding of each other's strategies for managing the impacts of the illness. The topics covered in the intervention prompted the spouses to initiate conversations that helped couples maintain a sense of mutuality. The intervention provided support to balance the tension between previous and new relational roles, which had changed due to the patient's illness.

CONCLUSIONS: Altogether, the results show that the benefits of family caregiver-targeted interventions may extend from spouse to patient, facilitating their everyday life. Our findings complement previous intervention evaluations by providing insights into how they may be effective. The goal should be that interventions potentially benefit patients and family caregivers.

TRIAL REGISTRY: The randomized controlled trial is registered at ClinicalTrials.gov, ID NCT05785494.

BACKGROUND AND PURPOSE: For the most advanced stage of metastatic castration-resistant prostate cancer (mCRPC), several life-prolonging treatments have become available over the past decade. Treatment decision-making (TDM) and experiences in this phase are yet to be studied. Hence, this study aimed to describe men's satisfaction with TDM and treatment experiences during the first 12 months of a life-prolonging treatment of mCRPC.

PATIENTS AND METHODS: This prospective study included 104 men with mCRPC who started and remained on the same life-prolonging treatment for 12 months. They received a questionnaire on TDM, treatment experiences, and well-being every 3 months. Correlation analyses explored associations between satisfaction with TDM at baseline and treatment experiences and well-being over time.

RESULTS AND INTERPRETATION: The participants (median age: 77 years) generally reported high satisfaction with physician- and nurse communication and confidence/trust at baseline (>55% reported the highest satisfaction in all questions), but lower satisfaction with communication regarding how the treatments could affect them - up to 40% reported not having talked about that at all. Treatment experiences and physical- and emotional well-being remained stable over time. Associations were found between satisfaction with TDM at baseline and how they rated the treatment as a whole at six months, and well-being at six and 12 months. In mCRPC, men's TDM preferences need to be explored, and shared decision-making needs to be facilitated when considering treatment. Furthermore, clinicians need to discuss how the treatment might affect patients' everyday lives when discussing life-prolonging treatments with them.

BACKGROUND: Web-based interventions targeted at family caregivers has become a quickly expanding research field, none the least since a growing number of patients with incurable illness are being cared for at home. Spouses, who are also family caregivers, constitute an especially vulnerable group in need of support when they are cohabitating with the ill patient and research shows that communication regarding the illness is important, yet challenging. This study therefore explored effects of a family caregiver-targeted web-based psycho-educational intervention on communication about incurable illness and remaining life between spouses and patients receiving specialized home care.

METHODS: The study had a pre-post-design. An intervention containing videos and texts about family caregiving was developed and made accessible via a website. Thirty-nine spouses (67% women, median age: 61) were recruited from specialised home care services. At baseline, and after 4 weeks of access to the website, spouses completed a questionnaire about communication with the patient regarding incurable illness and remaining life. Data was analyzed using the Wilcoxon signed-rank test.

RESULTS: No significant changes were found between baseline and follow-up. Most spouses did, however, report having talked with the patient about the illness being incurable (64%) and how the illness affected the patient physically (64%) and psychologically (77%) during the past month already at baseline. Regarding communication about the remaining life and how to manage once the patient had passed away, 46-59% instead reported not having had these conversations with the patient ever.

CONCLUSIONS: A majority of the spouses had talked about aspects of the illness and its consequences already at baseline, indicating that these matters are important to spousal caregivers of patients with incurable illness. However, a sizeable portion had not ever talked to the patient about how to manage once the patient had passed away, suggesting there are barriers to such conversations that need to be further explored. Future research on web-based psychoeducational interventions targeted at family caregivers need to address barriers and the diverse support needs regarding communication, especially about the remaining life, among spouses of patients with incurable illness.

TRIAL REGISTRATION: The study was first registered on clinicaltrials.gov(NCT03676283) on 2018.09.12.

Background: Participation in treatment decision-making (TDM) is important to patients with cancer and TDM experiences and preferences for how to make treatment decisions have been extensively studied in men with localised prostate cancer. Their preferences for how to partake in TDM are diverse and influenced by several factors. A significant proportion of men with localised prostate cancer, however, develop metastatic disease (mPC), after which the disease is considered incurable. The life-prolonging treatment possibilities at the most advanced stage of mPC, metastatic castration-resistant prostate cancer (mCRPC) have increased dramatically over the past decade, and far less is known about experiences and TDM in these advanced phases of the disease.

Aim: The overall aim of the thesis was to explore experiences, expectations and treatment decision-making in men with metastatic prostate cancer.

Methods: Studies I and IV were prospective, longitudinal cohort studies, study II was qualitative and study III had a qualitative, serial design. In study I, two matched groups of men with mPC (n=106) and non-mPC (n=211) were followed over 5 years with repeated questionnaires. Quality of life, symptoms and functioning were compared between the groups using independent samples Mann–Whitney U tests. The samples in studies II-IV comprised men with mCRPC who underwent life-prolonging treatment. In study II, 16 men were interviewed about their perspectives when faced with a life-prolonging treatment. Data was analysed using interpretive description. In study III, 17 men partook in serial qualitative interviews about their experiences of TDM and data was analysed with qualitative content analysis. In study IV, 114 men answered repeated questionnaires about satisfaction with TDM regarding the life-prolonging treatment and treatment experiences over the course of one year. Associations between satisfaction with TDM at baseline and treatment experiences and wellbeing at six and 12 months were explored using Spearman’s rank correlation.

Results: Compared to men with localised prostate cancer, men with mPC report increasing symptoms and worsening quality of life and functioning over time once they develop metastases. TDM was twofold and contained both the desired treatment outcome and aspects of the structure of how the treatment decision was made. When men with mCRPC are faced with a life-prolonging treatment, they weigh the potential treatment benefits – prolonging life – against the possible treatment side effects and their intrusion on the men’s everyday lives. Receiving personalised information was important to the men, and the treating physician was a key party in TDM to whom the men modified their TDM role and -actions. Their satisfaction with the TDM structure was also associated with their physical and emotional wellbeing over time.

Conclusion: TDM regarding life-prolonging treatment was found to be a complex, balancing act in which men with mPC face and manage a number of complex situations and have diverse experiences and preferences. Given that men with mPC report declining quality of life, symptoms and functioning and had unmet needs regarding information, continuity of care, communication and TDM, early integration of a palliative approach into the care of men with mPC could work as a way to identify and manage needs that need to be addressed.