BACKGROUND: The Support Needs Approach for Patients (SNAP) enables patients to reflect on, identify and prioritise their own support needs from a holistic perspective and enable tailored support. Therefore, the aim of this study was to examine the content validity and response processes for the Swedish version of the SNAP Tool among patients with life-threatening illness and palliative care needs, and registered nurses (RN) in specialized palliative home care services.

METHODS: This was a two-stage validation study: (I) translation of the original English version of the SNAP Tool into Swedish, and (II) examination of content validity for patients and RNs in specialized palliative home care, and response processes among the patients. Cognitive interviews were conducted with patients (n=11) and focus groups with RNs (n=10). Data were, in stage II, analysed for relevance, clarity, and sensitivity.

RESULTS: The translation process identified a few differences in wordings that were thoroughly debated to retain the meaning of the questions. Both patients and RNs considered the Swedish version of the SNAP Tool relevant to the palliative care context and its questions clear and easy to understand. Patients believed that their responses on the tool could be helpful in providing a clear structure for conversations and present a picture of their individual support needs. There were just a few considerations about sensitivity of questions from the patients' perspectives and the RNs felt that some of the questions may need to be handled with care.

CONCLUSIONS: This study demonstrates that the Swedish version of the SNAP Tool has good coverage of Swedish patients' support needs, and that the questions are perceived as intended. This indicates that the SNAP Tool effectively captures a wide range of support needs and aligns with its intended purpose. The tool is appropriate for specialized palliative home care and allows the SNAP intervention to be made available to this group of patients.

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: The Surprise Question (SQ) is a common method aimed at identifying frail patients who need serious illness conversations to integrate a palliative approach. However, little is known about whether the SQ identifies patients on hemodialysis who perceive that they are declining or have low health-related quality of life (HRQoL)-important aspects when considering the need for serious illness conversations.

OBJECTIVE: To explore how nurses and physicians' responses to the SQ are associated with patients' self-reported HRQoL.

DESIGN: Cross-sectional study.

SUBJECTS: In total, 282 patients on hemodialysis were included.

MEASUREMENTS: One nurse and one physician responded to the SQ for each patient. The patient-reported HRQoL was measured with the RAND 36-Item Health Survey 1.0 (RAND-36) and the EuroQual vertical visual analogue scale (EQ-VAS) from the EuroQual-5 Dimension Questionnaire (EQ-5D).

RESULTS: Nurses' responses "no, not surprised" to the SQ were associated with patient-reported worsened health compared to one year ago (RAND-36), and lower perceived overall health (EQ-VAS). Physicians' responses "no, not surprised" were associated with lower overall health and lower physical functioning. Patient-reported pain, general health, fatigue, and emotional and social aspects were not associated with responses to the SQ.

CONCLUSIONS: The findings indicate that the SQ identifies patients on hemodialysis who report low overall health and low physical functioning. However, the SQ did not identify patients who reported pain, emotional problems, or fatigue, which are also important aspects to consider in identifying needs for serious illness conversations, symptom management, and to be able to integrate a palliative approach.

INTRODUCTION: The surprise question (SQ) "Would I be surprised if this patient died within the next xx months" can be used by different professions to foresee the need of serious illness conversations in patients approaching end of life. However, little is known about the different perspectives of nurses and physicians in responses to the SQ and factors influencing their appraisals. The aim was to explore nurses' and physicians' responses to the SQ regarding patients on hemodialysis, and to investigate how these answers were associated with patient clinical characteristics.

METHODS: This comparative cross-sectional study included 361 patients for whom 112 nurses and 15 physicians responded to the SQ regarding 6 and 12 months. Patient characteristics, performance status, and comorbidities were obtained. Cohen's kappa was used to analyze the interrater agreement between nurses and physicians in their responses to the SQ and multivariable logistic regression was applied to reveal the independent association to patient clinical characteristics.

FINDINGS: Proportions of nurses and physicians responding to the SQ with "no, not surprised" was similar regarding 6 and 12 months. However, there was a substantial difference concerning which specific patient the nurses and physicians responded "no, not surprised", within 6 (κ = 0.366, p < 0.001, 95% CI = 0.288-0.474) and 12 months (κ = 0.379, p < 0.001, 95% CI = 0.281-0.477). There were also differences in the patient clinical characteristics associated with nurses' and physicians' responses to the SQ.

DISCUSSION: Nurses and physicians have different perspectives in their appraisal when responding to the SQ for patients on hemodialysis. This may reinforce the need for communication and discussion between nurses and physicians to identify the need of serious illness conversations in patients approaching the end of life, in order to adapt hemodialysis care to patient preferences and needs.

AIM: To explore nurses' experiences of supporting family caregivers in specialised home care while learning to use the Carer Support Needs Assessment Tool Intervention.

BACKGROUND: The Carer Support Needs Assessment Tool Intervention can provide guidance for discussions with family caregivers in specialised home care concerning their specific support needs. Little attention has been paid to how nurses experience the use of the intervention in their everyday practice.

DESIGN: This longitudinal study adopted an inductive qualitative approach using interpretive description.

METHODS: Interviews were conducted at two time points. A total of 22 interviews took place with 12 nurses recruited from six specialised home care services. Data were analysed using interpretive description.

RESULTS: Nurses' everyday clinical practice changed while learning to use the Carer Support Needs Assessment Tool Intervention, and they experienced professional and personal growth. Their supportive inputs shifted from being reactive towards being more proactive. Their approach changed from taking on great professional responsibility, towards a shared responsibility with family caregivers. The support altered from ad hoc contacts in the hallway, towards scheduled trustful conversations. Nurses were concerned about the amount of time and energy this kind of support might require. They pointed to the importance of holding good nursing skills to conduct this new way of having conversations.

CONCLUSION: Nurses' everyday clinical practice can be further developed through the use of the Carer Support Needs Assessment Tool Intervention. Nurses may develop both professionally and personally, increasing their ability to provide person-centred support.

RELEVANCE TO CLINICAL PRACTICE: With the use of the Carer Support Needs Assessment Tool Intervention, nurses can create trusting conversations with family caregivers of patients with life-threatening illnesses cared for in specialised home care.

REPORTING METHOD: Reporting of the study follows the Consolidated Criteria For Reporting Qualitative Research (COREQ) checklist (File S1).

PATIENT OR PUBLIC CONTRIBUTION: Participating nurses were involved in discussing the study design.

BACKGROUND: Death from sudden cardiac arrest implies a stressful and challenging situation for bereaved family members with an increased risk of prolonged grief disorder and psychological distress.

OBJECTIVES: The aims of this study were (1) to explore the associations between symptoms of prolonged grief and psychological distress and (2) to identify factors associated with symptoms of prolonged grief and psychological distress among bereaved family members of persons who died from sudden cardiac arrest.

METHODS: This cross-sectional survey included bereaved adult family members. Demographic data and measures of prolonged grief (Prolonged Grief Disorder-13), anxiety and depression (Hospital Anxiety and Depression Scale), posttraumatic stress (Posttraumatic Stress Disorder Checklist for DSM-5), and perceived social support (Multidimensional Scale of Perceived Social Support) were analyzed using Spearman's correlations (rs) as well as univariate and multiple linear regression analyses.

RESULTS: In total, 108 family members participated. Significant associations between symptoms of prolonged grief, anxiety, depression, and posttraumatic stress were identified (rs = 0.69-0.79, P < .001). Offered, sought, and/or received professional support from healthcare, lower levels of perceived social support, being a spouse of the deceased, female sex, younger age, and family presence during resuscitation were significantly associated with higher symptom levels of prolonged grief, anxiety, depression, and/or posttraumatic stress.

CONCLUSIONS: The results indicate that family members with higher levels of symptoms were offered, sought, and/or received professional support. However, because a minority are offered professional support after deaths from cardiac arrest, future interventions need to proactively identify family members in need of support. Furthermore, perceived social support seems to be an important factor for family members of persons who died from cardiac arrest.

PURPOSE: The Carer Support Needs Assessment Tool Intervention (CSNAT-I) was designed to help family caregivers identify, reflect upon, and express their support needs in a conversation with a health care professional and gain tailored support. The CSNAT-I has shown positive effects for both nurses and family caregivers but for more comprehensive understanding this study aims to examine family caregivers' experiences of discussing their needs with a nurse during specialised home care, utilizing the CSNAT-I.

METHODS: The study used an inductive qualitative descriptive design based on framework analysis. Data was collected using individual semi-structured telephone interviews with 10 family caregivers, with a median age of 66, from four specialised home care services.

RESULTS: Family caregivers appreciated having scheduled meetings with nurses utilizing the CSNAT-I which gave them an opportunity to focus on what was important to them. Family caregivers experienced that the conversations were co-created with a flexible dialogue. The conversations provided new perspectives and insights which helped in finding possible solutions. Family caregivers felt empowered by the co-created conversation and took on a more active role in involving the rest of their family to find support to themselves and the patients.

CONCLUSION: The CSNAT-I can facilitate communication between family caregivers and nurses leading to adequate supportive inputs. The intervention gives family caregivers an increased opportunity to be involved in their own support, which may enhance their sense of security. According to family caregivers' experiences, CSNAT-I may be an adequate way to support family caregivers to reflect and discuss their needs.

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: The loss of a close person from sudden cardiac arrest (CA) leaves family members at risk of developing grief reactions such as symptoms of prolonged grief, anxiety, depression, and posttraumatic stress. The aim was to describe longitudinal variations in grief reactions and its association with professional and social support among bereaved family members after a close person's death from sudden CA.

METHODS: This longitudinal multimethod survey included 69 bereaved family members who completed a questionnaire 6 and 12-months after the CA, including the Prolonged Grief Disorder-13, Hospital Anxiety and Depression Scale, PTSD Checklist for DSM-5, and Multidimensional Scale of Perceived Social Support. Qualitative data were collected by open-ended questions. Quantitative data was analyzed using Wilcoxon signed-rank test and linear regression analysis while written comments were analyzed using qualitative content analysis.

RESULTS: The median age was 62 years, 67 % were women, and 38 % had been present during the resuscitation attempts. Using the cut-off scores at the 6- and 12-month assessments respectively, 14 % and 17 % reported symptoms of prolonged grief, 32 % and 26 % symptoms of anxiety, 14 % and 9 % depression, and 4 % and 1 % posttraumatic stress. Professional and social support at the 6-month assessment were significantly associated with symptoms of prolonged grief, anxiety, depression, and/or posttraumatic stress at the 12-month assessments but could not predict any changes in the grief reactions.

CONCLUSIONS: Family members' grief reactions point to the importance of proactive and available support over time to meet family members' needs.