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.

Purpose: This study aims to explore the experiences of care, psychosocial support, and psychosocial wellbeing among patients treated for COVID-19 in intensive care 12 to 18 months after discharge.

Methods: This study used a qualitative approach with a descriptive design. Semi-structured interviews were performed with 20 adult patients treated for COVID-19 12 to 18 months after being discharged from a university hospital in Sweden. Data were analysed using qualitative content analysis.

Findings: The participants were severely affected by COVID-19 both during the hospital stay and afterwards. They experienced overwhelming fears and uncertainties related to their wellbeing and possibility to recover. The care was described chaotic with staff that were stressed; however, the efforts of the staff during this strenuous circumstance were still positively acknowledged. Difficulties to stay in touch with family and friends due to visiting restrictions affected the patient's psychosocial wellbeing.

Conclusion: Contracting COVID-19 in the beginning of the pandemic was a stressful event. Being seen and heard is of importance as it has the possibility to create a feeling of security and being cared for despite unclarities about treatment and illness trajectory. Accordingly, healthcare staff play an important role for the psychosocial wellbeing of patients treated for COVID-19.

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.

Background: In Swedish intensive care units, nine percent of patients do not survive despite receiving advanced life-sustaining treatments. As these patients transition to end-of-life care, ethical considerations may become paramount.

Aim: To explore the ethical challenges that critical care nurses encounter when caring for patients at the end of life in an intensive care context.

Research design: The study used a qualitative approach with an interpretive descriptive design.

Research context and participants: Twenty critical care nurses from eight intensive care units in an urban region in Sweden were interviewed, predominately women with a median age of fifty-one years.

Ethical considerations: This study was approved by The Swedish Ethics Review Authority.

Findings: Critical care nurses described encountering ethical challenges when life-sustaining treatments persisted to patients with minimal survival prospects and when administering pain-relieving medications that could inadvertently hasten patients’ deaths. Challenges also arose when patients expressed a desire to withdraw life-sustaining treatments despite the possibility of recovery, or when family members wanted to shield patients from information about a poor prognosis; these wishes occasionally conflicted with healthcare guidelines. The critical care nurses also encountered ethical challenges when caring for potential organ donors, highlighting the balance between organ preservation and maintaining patient dignity.

Conclusion: Critical care nurses encountered ethical challenges when caring for patients at the end of life. They described issues ranging from life-sustaining treatments and administration of pain-relief, to patient preferences and organ donation considerations. Addressing these ethical challenges is essential for delivering compassionate person-centered care, and supporting family members during end-of-life care in an intensive care context.

OBJECTIVES: Multiple studies have focused on severely ill patients in the role as parents of dependent children, yet few have explored the thoughts and feelings within this group during palliative home care.

METHODS: This qualitative study derives from a pilot intervention study, the Family Talk Intervention (FTI), in specialized palliative home care. The FTI is a support program with the main goal to increase family communication about illness-related topics. The study is based on field notes from 104 sessions with 20 parents taken by an interventionist during intervention delivery. The field notes were analyzed using the principles of qualitative content analysis.

RESULTS: The field notes revealed several challenging situations for parents with severe illness. A major issue was how to find ways to talk to their children about their illness and prognosis. The parents expressed guilt for being unable to fulfill their roles as parents and partners. Existing family conflicts had escalated with the illness, according to some parents. Despite being affected by illness, parents tried to have hope, if only for small things - such as a period of ordinary family life.

SIGNIFICANCE OF RESULTS: Severely ill parents in specialized palliative home care seek support regarding how to communicate and stay connected to their roles in the family, which is a struggle when a parent is cared for at home, while it in contrast may promote normality and hope. Communication with children is vital and needs to be brought to the attention of health-care professionals. A family-centered focus, involving both parents and children, should be embraced.

OBJECTIVES: Family caregivers often feel insufficiently prepared for a caregiving role, experiencing challenges and demands related to care at home that may negatively affect their own quality of life. Supportive interventions have been shown to influence negative effects, but more studies are needed. Therefore, this study aims to explore potential effects of the Carer Support Needs Assessment Tool Intervention on preparedness, caregiver burden, and quality of life among Swedish family caregivers in specialized home care.

METHODS: The study had a pre-post intervention design and was conducted at 6 specialized home care services in Sweden. Family caregivers who received the intervention completed a questionnaire, including the Preparedness for caregiving scale, Caregiver Burden Scale, and Quality of Life in Life-Threatening Illness - Family carer version, at 2 time points, baseline and follow up, about 5 weeks later. Data were analyzed using descriptive statistics and Wilcoxon signed-rank test.

RESULTS: Altogether, 33 family caregivers completed the baseline and follow-up assessment. A majority were retired (n = 26, 81%) and women (n = 19, 58%) and two-fifths had a university degree (n = 13, 41%). The family caregivers had significantly increased their preparedness for caregiving between the baseline and follow-up assessment (Mdn = 18 vs. 20, p = 0.002). No significant changes were found on caregiver burden or quality of life.

SIGNIFICANCE OF RESULTS: The results add to knowledge regarding the Carer Support Needs Assessment Tool Intervention's potential to improve family caregiver outcomes. Findings suggest that the intervention may be used to improve the preparedness for caregiving and support among family caregivers in specialized home care.

Background/Aim Family caregivers and patients in palliative care are often mutually dependent, supporting each other through the impact of serious illness. The possibility to cope as a couple is of particular importance for family caregivers when providing care at home. A psycho-educational website was developed to support family caregivers in this situation. In short videos healthcare professionals and family caregivers (actors) interact, discussing issues known to be of importance for family caregivers, for example illness-related communication and planning for the future. This study aimed to explore influences of web-based support on experiences of mutual support between family caregivers and patients with life-threatening illness.

Methods This study was part of a randomised controlled trial and used a qualitative approach. In total, 8 couples were interviewed, one family caregiver and one patient together in each interview (age 46–85). Data were analysed using interpretive description.

Results Both family caregivers and patients appreciated the opportunity for family caregivers to have their own private platform of support. For each of them personally, and as a couple, it was relieving that also family caregivers’ needs gained attention and were put into focus. Family caregivers expressed feelings of normalisation as their own thoughts were addressed in the videos. Recognising the situations described in the videos was empowering, helping to cope with their own stress and strain, as well as facing the patient’s similar feelings. This facilitated their everyday life as a couple supporting each other in illness. Couples described themselves as being a team.

Conclusions This website, supporting family caregivers, influenced family caregivers’ and patients’ mutual life by enhancing understanding of the shared situation and how to approach it. Although only family caregivers did access the website, it was beneficial for both of them in their everyday life.

Background

Performing clinical trials in palliative cancer care is known to be challenging.

Objective

This study aimed to explore how patients with advanced cancer experienced their participation in a randomised, placebo- controlled trial while receiving palliative cancer care at end of life.

Method

A descriptive design with a qualitative approach was used. 14 patients who had participated in the ‘Palliative- D’ study were interviewed. Data were analysed using content analysis.

Results

Three categories were identified understanding the study design, willingness to participate and collaboration with the research team alongside standard care. Being randomised, with the risk of receiving placebo, was perceived as non- problematic since it was understood as being important for the quality of the research. Patients showed a willingness to participate for the sake of others and also for their own sake, hoping for a cure or at least to live as long as possible. Patients felt proud of being useful and contributing to research. Consent to participate was made autonomously without discussing with others. Patients considered the study design uncomplicated and well- integrated into the standard care.

Conclusion

Study participation in a randomised, placebo- controlled trial can be a positive and meaningful experience for patients despite advanced cancer in end of life. Participation may support patients’ autonomy and give hope, and therefore, might have a positive effect on quality of life. A carefully planned and simple study design, well integrated into standard care, can facilitate the feasibility of clinical studies in specialised palliative home care.

Objectives: The aim was: (1) to investigate preferred place for end-of-life care and death for bereaved family members who had recently lost a person with advanced illness and (2) to investigate associations between bereaved family members’ preferences and individual characteristics, health-related quality of life, as well as associations with their perception of the quality of care that the ill person had received, the ill person’s preferred place of death and involvement in decision-making about care.

Methods: A cross-sectional survey with bereaved family members, employing descriptive statistics and multinominal logistic regression analyses.

Results: Of the 485 participants, 70.7% were women, 36.1% were ≥70 years old, 34.5% were partners and 51.8% were children of the deceased. Of the bereaved family members, 52% preferred home for place of end-of-life care and 43% for place of death. A higher likelihood of preferring inpatient palliative care was associated with being female and having higher education, whereas a lower likelihood of preferring a nursing home for the place of care and death was associated with higher secondary or higher education. Partners were more likely to prefer hospital for place of care and nursing home for place of death.

Conclusions: Home was the most preferred place for end-of-life care and death. Bereaved people’s experiences of end-of-life care may impact their preferences, especially if they had a close relationship, such as a partner who had a higher preference for nursing home and hospital care. Conversations about preferences for the place of care and death considering previous experience are encouraged.

The purpose of this study was to (1) explore associations between preparedness for caregiving and preparedness for death among family caregivers of patients with advanced cancer and (2) explore modifiable preparedness factors, such as communication and support. Data was derived from a baseline questionnaire collected in specialized home care. The questionnaire included socio-demographics, the Preparedness for Caregiving Scale, and single items addressing preparedness for death, received support and communication about incurable illness. Data was analyzed using descriptive statistics and Spearman correlations. Altogether 39 family caregivers participated. A significant association was found between preparedness for caregiving and preparedness for death. Received support and communication about the illness was associated with higher levels of preparedness for caregiving and death. This study contributes to evidence on the association between preparedness for caregiving and death, but also that communication and support employed by healthcare professionals could improve family caregiver preparedness and wellbeing.