Background: Family caregivers take on substantial caregiving responsibilities and report unmet support needs of their own when caring for a person with life-threatening illness.

Aim: To explore self-rated support needs and their association with preparedness for caregiving among family caregivers in specialised palliative home care.

Methods: Family caregivers of patients with life-threatening illness were recruited. Family caregivers completed questionnaires at baseline and 4 weeks later, including the Preparedness for Caregiving Scale and the Carer Support Needs Assessment Tool. Descriptive statistics and linear regression analyses were performed.

Results: Family caregivers' (n=153) support needs varied over time across several domains. Unmet needs were associated with lower baseline preparedness for caregiving, but a greater improvement in preparedness over time. When needs were met, family caregivers showed a significant improvement in their sense of preparedness.

Conclusions: Support needs and preparedness for caregiving are closely related. Addressing support needs is important to enhance preparedness.

Bakgrund: I Sverige har närståendes roll blivit alltmer avgörande då allt fler äldre med multisjuklighet får vård i hemmet genom hemtjänst och hemsjukvård. Många närstående, bär ett betydande ansvar för omsorgen om äldre föräldrar som bor i eget boende även i hög ålder. Forskning visar att många närstående känner sig oförberedda och i behov av stöd, samtidigt som kunskapen om denna grupp är begränsad.

Syfte: Att utforska närståendes erfarenheter av att hjälpa och stödja en äldre förälder med multisjuklighet i eget boende som vårdas inom primärvårdens hemsjukvård.

Metod: En klusterrandomiserad kontrollerad interventionsstudie genomfördes vid 15 vårdcentraler och individuella intervjuer gjordes med 18 närstående i kontrollgruppen. Totalt deltog 12 döttrar, medelålder 60 år (44–71) och 5 söner, medelålder 61 år (53–66) boende i Region Stockholm. Analysen genomfördes med kvalitativ innehållsanalys.

Resultat: Analysen identifierade fyra huvudteman: 1) ansvar för samordning av vård och omsorg (2) en ständig beredskap i vardagen (3) kommunikation om sjukdom och vård, (4) närståendes delaktighet i vården. Närstående upplevde vården och omsorgen av en förälder i eget boende som komplex och tog ofta ansvar för att samordna vårdkontakter och säkerställa att den äldres vårdbehov tillgodosågs. De beskrev en kontinuerlig beredskap av både emotionella och praktiska utmaningar. De flesta hade samtalat med föräldern om dennes sjukdomar. Digitala vårdtjänster underlättade delaktigheten genom regelbunden kontakt med hemsjukvård och andra vårdgivare. Trots detta upplevde många närstående bristande förberedelse och otillräckligt stöd.

Slutsats: Närstående till en äldre förälder i eget boende har en central roll i att både ge och samordna vården för en förälder med multisjuklighet. Resultaten tydliggör behovet av individanpassat stöd och förbättrad kommunikation mellan vårdpersonal och närstående. Utbildning i kommunikation och riktade stödinsatser är nödvändiga för att stärka professionellas förmåga att möta närståendes behov, särskilt i livets slut.

Background: In Sweden, the role of family caregivers has expanded significantly as more older persons with multimorbidity, and complex care needs are cared for by non-specialist palliative home care services. Family caregivers play a crucial role and bear considerable responsibilities in end-of-life care. Previous research shows that many feel unprepared and in need of support, however, less is known about this group of caregivers.

Aim/Research question or hypothesis: To explore family caregivers' experiences of support and preparedness while caring for an older person with multimorbidity receiving non-specialist palliative home care.

Methods: This qualitative study used data from the control group in a cluster randomized controlled intervention study. Individual interviews were conducted with 16 family caregivers (12 daughters, 2 sons, 2 wives; mean age 63, range 41–82) living in the Stockholm Region, Sweden. Data were analysed using qualitative content analysis.

Results: The analysis identified four categories. These categories illustrate how family caregivers perceived the complexity of caring for an older person with multimorbidity at home, often assuming responsibility for coordinating healthcare contacts and addressing care needs. Family caregivers described a constant state of readiness, managing both emotional and practical challenges. Most had discussed the older person's illnesses with them. Many reported that digital healthcare services supported their involvement, enabling regular contact with home care staff and healthcare providers, and allowed frequent visits. Despite their essential role, many caregivers felt unprepared and reported a lack of adequate support.

Discussion: This study highlights the essential role of family caregivers in providing and coordinating care for older persons with multimorbidity in non-specialist palliative home care. The findings emphasize the need for individualized support interventions and improved communication between healthcare professionals and family caregivers. Training in communication and caregiver support is essential to strengthen professionals' ability to meet caregivers' emotional and practical needs, especially in end-of-life care.

Background: Living with advanced illness at home involves navigating uncertainty, dependency, and the dynamics of close relationships. A Sense of Coherence, as described by Antonovsky, comprising comprehensibility, manageability, and meaningfulness, has been linked to how people sustain well-being despite adversity. Given that supporting well-being is central within palliative care, it becomes important to understand how Sense of Coherence is expressed among patients in this context.

Aim/Research question or hypothesis: To explore expressions of Sense of Coherence among patients living with a partner while receiving specialised palliative home care.

Methods: This qualitative study is based on a secondary analysis of 22 semi-structured interviews with patients (median age: 73; age range: 50-86), diagnosed with life-threatening illnesses and enrolled in specialised palliative home care in Sweden. Transcripts were analysed using a deductive qualitative content analysis guided by Antonovsky's Sense of Coherence framework (comprehensibility, manageability, and meaningfulness).

Results: Comprehensibility was reflected in shared understanding, open communication, and daily routines. Manageability emerged through emotional and practical support, shared planning, and balancing dependence with autonomy. Meaningfulness was expressed in shared activities, humour, and love, reinforcing identity and motivation. Patients described situations in which these dynamics strengthened their ability to cope with illness and existential challenges.

Discussion: Patients in specialised palliative home care appear to construct a Sense of Coherence through their relationship with a partner. Recognising such expressions may help palliative care professionals support relational and existential resources that sustain manageability and meaning at for patients with life-threatening illness.

Background: In palliative care, family caregivers take on substantial responsibilities and report unmet support needs of their own. An important aspect of supporting family caregivers is promoting preparedness for caregiving. Exploring support needs in relation to preparedness provides insights into how family caregivers can manage caregiving demands.

Aim/Research question or hypothesis: To explore self-rated support needs and their association with preparedness for caregiving among family caregivers in specialised palliative home care.

Methods: This prospective study is based on data from a randomized controlled trial evaluating a web-based intervention. Family caregivers of patients with life-threatening illness were recruited from five specialised palliative home care services. Participants completed questionnaires at baseline and 4 weeks later, including sociodemographic questions, the Preparedness for Caregiving Scale (PCS), and the Carer Support Needs Assessment Tool (CSNAT). Descriptive statistics and linear regression analyses were performed.

Results: Family caregivers (n=153) had a mean age of 64.0 years (SD=12.5). The majority were female (61.4%), caring for a patient with cancer (92.5%), and were the patients' partners (68.0%). Two of the most reported support needs were knowing what to expect in the future, and dealing with own feelings and worries. Unmet support needs at baseline were associated with lower initial preparedness for caregiving (13 of 15 CSNAT domains). Additionally, reporting a support need at baseline was associated with a greater change in preparedness for caregiving (8 of 15 CSNAT domains). When support needs were met, family caregivers showed a significant improvement in their sense of preparedness (11 of 15 CSNAT domains).

Discussion: Support needs and preparedness for caregiving are closely related. It is important to identify and respond to family caregivers' individual support needs to enhance their preparedness for caregiving, and these concepts may benefit from being studied together.

Objectives: There is a lack of family-based psychosocial support interventions in palliative care when a parent of children or youths has a life-threatening illness. One intervention that has shown positive effects is the family talk intervention (FTI). This study aimed to describe the influence of contextual factors on FTI sustainability, as perceived by healthcare professionals (HCPs), after a median of 18 months of implementation in clinical practice in cancer and palliative care when a parent of children or youths has a life-threatening illness.

Methods: Focus groups and individual interviews were conducted with 15 HCPs working with FTI. Data were analyzed using conventional qualitative content analysis.

Results: HCPs identified contextual factors that facilitated or hindered the use of FTI. The analysis resulted in 3 categories, Trying to prioritize FTI and coordinate families in a complex context is challenging, Working alone without FTI-educated colleagues hamperssustainability, the satisfaction of seeing families become stronger contributes to a receptiveness for change.

Significance of the results: This study shows that organizational support and resources, alongside the individual's facilitating factors, such as receptiveness for change, are crucial for sustainability after the initial implementation. Witnessing a positive impact is motivational and also supports the sustainability of an intervention despite contextual constraints.

Background: The Family Talk Intervention (FTI) is a psychosocial intervention supporting families where a family member has palliative care needs. This study aimed to evaluate how the Family Talk Intervention (FTI) was implemented over time from the perspective of hospital social workers (HSWs) in their everyday clinical practice among families with a severely ill parent or child in need of palliative care.

Methods: HSWs (n=21) working in adult and children’s care completed a 10-day education where they were trained to use FTI. The education was part of a multifaced implementation strategy involving educational outreach visits, facilitation, clinical implementation meetings, and audit and feedback. The HSWs were then expected to use FTI in their clinical practice to support families with dependent children. To assess if and how FTI was integrated into their daily practice, they were also asked to complete the Swedish version of the Normalization Process Theory Measure (S-NoMAD) on three occasions: on completion of the FTI-education, six months later, and one year later. For the longitudinal analysis of data, Friedman’s test was used.

Results: The HSWs rated the use of FTI high after completing the FTI-education, indicating a positive attitude towards FTI. In the longitudinal analysis, statistically significant changes were seen for two questions in S-NoMAD, where the HSWs’ ratings showed that the FTI became more familiar and normalized over time. Generally, the HSWs’ ratings of S-NoMAD’s main constructs were high and stable over time, indicating a positive view of FTI and its implementation. However, for the single questions, the ratings were slightly more negative to some contextual aspects, such as managerial support and resources.

Conclusion: As results showed, HSW mainly rated different aspects of the implementation process as positive, both from the beginning, but also over time. Therefore, the intervention could be judged to have been implemented as a tool to support families when a parent or a child is severely ill. Contextual factors, involving managerial support and resources were rated lower, indicating the importance of those aspects when introducing interventions into healthcare. The result also indicates that the multifaced implementation strategy supported the HSW’s everyday clinical practice.

Background: The Family Talk Intervention (FTI) is a psychosocial intervention supporting families where a family member has palliative care needs. This study aimed to evaluate how the Family Talk Intervention (FTI) was implemented over time from the perspective of hospital social workers (HSWs) in their everyday clinical practice among families with a severely ill parent or child in need of palliative care.

Methods: HSWs (n = 21) working in adult and children's care completed a 10-day education where they were trained to use FTI. The education was part of a multifaced implementation strategy involving educational outreach visits, facilitation, clinical implementation meetings, and audit and feedback. The HSWs were then expected to use FTI in their clinical practice to support families with dependent children. To assess if and how FTI was integrated into their daily practice, they were also asked to complete the Swedish version of the Normalization Process Theory Measure (S-NoMAD) on three occasions: on completion of the FTI-education, six months later, and one year later. For the longitudinal analysis of data, Friedman's test was used.

Results: The HSWs rated the use of FTI high after completing the FTI-education, indicating a positive attitude towards FTI. In the longitudinal analysis, statistically significant changes were seen for two questions in S-NoMAD, where the HSWs' ratings showed that the FTI became more familiar and normalized over time. Generally, the HSWs' ratings of S-NoMAD's main constructs were high and stable over time, indicating a positive view of FTI and its implementation. However, for the single questions, the ratings were slightly more negative to some contextual aspects, such as managerial support and resources.

Conclusion: As results showed, HSW mainly rated different aspects of the implementation process as positive, both from the beginning, but also over time. Therefore, the intervention could be judged to have been implemented as a tool to support families when a parent or a child is severely ill. Contextual factors, involving managerial support and resources were rated lower, indicating the importance of those aspects when introducing interventions into healthcare. The result also indicates that the multifaced implementation strategy supported the HSW's everyday clinical practice.

Bakgrund: Förberedelse för att vårda innebär tilltro till den egna förmågan att ge vård och hantera den stress som rollen som närståendevårdare medför. Webbaserade interventioner erbjuder flexibelt stöd som kan komplettera vården och stärka närståendes förberedelse.

Syfte: Att utvärdera om en webbaserad intervention för närstående kan öka deras förberedelse för att vårda under pågående specialiserad palliativ hemsjukvård.

Metod: Interventionen ’Närstående.se’ ges via en webbsida och består av 23 korta filmer där närstående (skådespelare) och vårdpersonal (autentisk) diskuterar centrala vårdrelaterade teman, såsom närståenderollen, vanliga symtom och att samtala med varandra om sjukdom och framtid. På webbsidan finns även informativa texter och länkar. Interventionen syftar till att öka närståendes förberedelse för att vårda och har utvärderats med en randomiserad kontrollerad design. I enkäter besvarade närstående en svensk validerad översättning av Preparedness for Caregiving Scale och studiespecifika frågor vid baslinjen samt efter 4 och 8 veckor. Data analyserades med en linjär flernivåmodell. Subgruppsanalyser genomfördes i flera steg baserat på grad av självrapporterad förberedelse vid baslinjen vilket kombinerades med grad av deltagande i vård samt aktiv användning av interventionen.

Resultat: Totalt deltog 205 närstående (intervention n = 103, kontroll n = 102), genomsnittsåldern var 64 år och 62% var kvinnor. De flesta var partners (68%) och deltog i vården dagligen (27%) eller flera gånger per dag (20%). Ingen statistisk effekt av interventionen kunde påvisas, vare sig i huvudanalysen eller i subgruppsanalyserna. Däremot rapporterade närstående i både interventions- och kontrollgrupp, i samtliga subgrupper, högre nivåer av förberedelse för att vårda vid både 4- och 8-veckorsuppföljningen jämfört med baslinjen (p = 0,01 till < 0,001).

Konklusion: I både interventions- och kontrollgruppen ökade närståendes förberedelse för att vårda över tid, vilket tyder på att andra faktorer än interventionen bidrog. Framtida studier bör utvärdera ’Närstående.se’ under integrerad och guidad användning i klinisk vård.

Objectives: This study aims to describe bereaved family members experiences of end-of-life carefollowing the death of a close person in ICU.

Methods: A qualitative descriptive design was used. Semi-structured interviews were conducted with 22 bereaved family members (18 women and 4 men, aged 26 to 81). The inclusion criteria were being abereaved family member of an adult patient who had died in one of the seven participating ICUs, beingat least 18 years old, and proficient in Swedish. Data was analyzed using reflexive thematic analysis.

Results: The findings are described in five themes: Time filled with fear and uncertainty, Challenges in understanding critical information, Struggling to grasp the imminence of death, Fear of patient had suffered at the very end of life, and The importance of farewell in the ICU. Family members described the transition from active treatment to end-of-life care as being unclear, with the realization of death was approaching occurring gradually and sometimes suddenly, leading to confusion and distress. The opportunity to take farewell, whether through physical presence, shared silence, or collective rituals, was described as essential to finding peace and fostering emotional closure.

Conclusions: In ICUs, family members are in great need of compassionate support, characterized by the presence of ICU nurses and their emotionally attuned communication. This support helps family members navigate the complexity in care, fostering trust, meaning-making, and a sense of dignity.

Implications for Clinical Practice: It is important that ICU nurses have the possibility to prioritize sensitive, individualized communication, emotional support, and opportunities for meaningful farewells. Flexibly accommodating family members' needs and preferences at the end of life is central to delivering respectful family-centered care.