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.

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.

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.

Background: Many family caregivers report unmet psychosocial and informational needs, which may negatively affect their health and quality of life. To prevent this, a web-based psychoeducational intervention featuring videos and texts has been developed.

Aim/Research question or hypothesis: To investigate the effects of the web-based intervention on family caregivers’ health and quality of life in specialized home care four weeks after access to the intervention.

Methods: In a family caregiver-targeted web-based intervention, participants were randomized to intervention or control group. Health and quality of life were assessed at baseline and after 4 weeks using one overall question from RAND-36 (1 excellent, 5 poor) and QOLLTI-F (0 very bad, 10 excellent), respectively. Mann-Whitney U tests and Wilcoxon signed-rank tests were used to evaluate intervention effects.

Results: Participants n=205 had an average age of 64 years range 19–88, with 62.5 % being women, and the majority were the patient’s partner 68.8 %. Questionnaires were completed at baseline n=103 intervention and n=102 control, and at follow-up n=74 vs. n=78. At baseline, family caregivers in intervention and control reported health scores of Md=2.0 and Md=3.0, respectively, and quality of life scores of Md=7.0 and Md=7.0, respectively. No significant differences were found in health within groups intervention: p=0.063, control: p=0.092 or in quality of life p=0.340 vs. p=0.238. Additionally, no significant differences were found between groups health: p=0.897, quality of life: p=0.631.

Discussion: Although the web-based intervention offered accessible and flexible support, no effects on health or quality of life were found. Relatively high baseline levels may have limited the potential for improvement. It is also reasonable to assume that improvement is unlikely among family caregivers of patients near the end of life. Consistent with other studies, family caregivers with relatively high levels of health and quality of life appear more inclined to participate in research.

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. Webbased 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.

Objective: Preparedness for caregiving refers to how ready family caregivers perceive themselves for caregiving tasks and stress of the caregiving role. This study investigated whether a web‐based psychoeducational intervention could improve preparedness for caregiving among family caregivers of patients receiving specialized palliative home care.

Methods: The intervention "narstaende.se" was provided via a website featuring 23 short videos in which healthcare professionals and family caregivers (actors) discussed key care‐related issues. Family caregivers were randomized to the intervention or control group and completed the Preparedness for Caregiving Scale (PCS) at baseline, 4 weeks, and 8 weeks. Data were analyzed using linear mixed models. The intervention effect was assessed based on PCS scores of the entire sample, followed by subgroup analyses based on level of baseline preparedness for caregiving, participation in physical care, and active intervention use, as determined by responses to single‐item questions.

Results: A total of 205 family caregivers were recruited (103 intervention, 102 control). The intervention had no significant effect on preparedness for caregiving, including in subgroups based on level of baseline preparedness for caregiving, participation in physical care, or active intervention use. However, all subgroups reported higher levels of preparedness for caregiving at both follow‐up assessments than at baseline.

Conclusions: Preparedness for caregiving improved over time in both the intervention and control groups, suggesting other contributing factors. Limited participant engagement may explain the lack of intervention effect. Future studies should evaluate the intervention with more structured and clinically integrated use.

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/Aims Even though in person supportive group interventions for family caregivers have been effective they can also be challenging to implement. Web-based support could be an alternative and hence we developed a website focused on a psycho-education for family caregivers. In short videos healthcare professionals and family caregivers (actors) interact, discussing issues known to be of importance for family caregivers. Informative texts and a moderated chat forum are also included. This study aimed to explore family caregivers’ experiences of the website while caring for a patient with life-threatening illness at home.

Methods The present study was a part of a randomised controlled trial and used a qualitative approach. Interviews were performed with 16 family caregivers (age 42–85); 12 partners, 2 adult children, 1 parent, and 1 sibling. Data were analysed using qualitative content analysis.

Results Family caregivers appreciated the flexibility and possibility to access the website at a time and place of their own convenience when ready to do so. Having access to the website was perceived as reassuring because caregivers knew they could access support when needed throughout the illness progression. Using the website made it easier to approach and reflect upon issues related to incurable illness and death, it also facilitated addressing such issues with the patient. The videos contributed to a sense of recognition and comfort when the family caregivers’ own thoughts, concerns, and feelings were described by others. This was important to gain new insights on difficulties and challenges in their role as caregivers. Family caregivers hesitated to use the chat forum even though they wanted to. They expressed waiting for others to initiate a conversation.

Conclusions Psycho-education content via a website allowed family caregivers to decide what support they wanted depending on needs, time, and situation. Future research should focus on evaluating effects of web-based support through experimental designs.

Bakgrund: I palliativ vård är närstående och patienter som är partners ofta ömsesidigt beroende av varandra och ger varandra stöd för att hantera de utmaningar som uppstår till följd av svår sjukdom. Möjligheten att möta och hantera sjukdom tillsammans är av särskild betydelse när närstående ger vård och stöd i det gemensamma hemmet. Webbsidan Närstående.se har utvecklats med syfte att ge stöd till närstående. Webbsidan innehåller korta filmer där autentisk vårdpersonal samtalar med närstående som spelas av skådespelare, om ämnen som ofta är av betydelse för närstående.

Syfte: Att undersöka hur webbsidan Närstående.se påverkar partners gemensamma liv med svår sjukdom under pågående specialiserad hemsjukvård.

Metod: Denna studie som ingår i ett större projekt med randomiserad kontrollerad design och antogen kvalitativ ansats. De 204 närstående som deltagit i den övergripande studien tillfrågades när de använt webbsidan i 4–6 veckor om att delta i en intervju. Totalt intervjuades 32 personer, varav 16 närstående tillsammans med sina partners (ålder 46–85 år). Data analyserades med tolkande beskrivning.

Resultat: Genom att närstående använde webbsidan fick närstående och patienter fördjupad förståelse för varandras perspektiv på den gemensamma situationen. Webbsidans teman hjälpte närstående att inleda samtal med patienten, vilket bidrog till att bygga samförstånd. Webbsidan ökade närståendes medvetenhet om betydelsen av eget andrum och en paus från den vårdande rollen, vilket uppmuntrades av patienten. Genom denna ömsesidighet underlättade att hantera den föränderliga relationen.

Konklusion: Webbsidan Närstående.se hade betydelse för främjandet av förståelse för den gemensamma situationen och ömsesidighet mellan närstående och patient vid svår sjukdom och vård i hemmet. Detta tyder på att webbaserade interventioner riktade till denna grupp kan stödja både närstående och patienter och vara ett tillägg till andra vårdinsatser. Studien ger ökad kunskap och förståelse för hur interventioner riktade till närstående kan påverka det gemensamma livet för närstående och patienter.