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.

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: 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.

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. 

Objectives: Psychoeducational interventions for family caregivers have shown to be effective but not possible for all caregivers to attend; thus, web-based interventions may be a complement. This study aimed to evaluate feasibility of a web-based intervention, "narstaende.se," from the perspective of spouses of patients receiving specialized home care.

Methods: A website was developed, containing videos with conversations between health-care professionals and family caregivers (actors), informative texts, links to further information, and a chat forum. The aim of the website is to provide support and promote preparedness for caregiving and death, and the content is theoretically and empirically grounded. The study had a descriptive cross-sectional design. Altogether, 26 spouses answered a questionnaire, before accessing the website, and 4 weeks after this, 12 spouses were interviewed. Descriptive statistics and qualitative content analysis were used.

Results: Spouses experienced the website as being easy to use, welcoming, and with relevant content. Participating spouses would recommend "narstaende.se" to others in similar situations, and the majority found the website introduced timely. Videos seemed easily accessible and were most used, contributing to a feeling of recognition and sharing the situation. The online format was perceived as flexible, but still not all spouses visited the website, stating the desire for support in real life.

Significance of results: A web-based intervention can be feasible for spouses in specialized home care; however, the digital format is not suitable for everyone. Further research is needed to determine the website's potential to provide support and increase preparedness for family caregivers in general.

Bakgrund: Det är vanligt att närstående tar stort ansvar för vård i hemmet men också att de känner sig oförberedda inför livet med en svårt sjuk partner. Många upplever en psykiskt och social påfrestning, nedsatt hälsa och bristande insikt om framtiden. Högre grad av förberedelse kan bidra till mindre oro, ångest, nedstämdhet och bättre välbefinnande. Med syfte att erbjuda stöd har en webbplats, narstaende.se, innehållande filmer där sjukvårdspersonal (autentiska) möter närstående (skådespelare) i en situation likt den de närstående befinner sig i utvecklats. Det finns även informativa texter samt länkar till vidare information och ett chattforum.

Syfte: Att utvärdera användbarhet, innehåll och de närståendes upplevelse av narstaende.se.

Metod: Närstående vid ASIH enheter i Stockholm inkluderas och de besvarar en enkät innan tillgång tillwebbplatsen samt efter 4 veckor. I enkät två ingår frågor om användande av webbplatsen, hur de uppfattat filmer, texter, länkar samt chatt, inverkan på förberedelse att vårda. De närstående som samtycker intervjuas för att få djupare förståelse.

Resultat: Data från enkäter visar att flertalet anser att tillgången till narstaende.se kom vid lämplig tidpunkt och att de skulle rekommendera den till andra i liknande situation. I intervjuer har närstående uttryckt att de tagit vara på dagarna på ett annat sätt, känt stöd i att arbeta eller vara hemma mer, göra aktiviteter på egen hand, förberett praktiska frågor samt fått bekräftelse i att ”det här är vanligt eller naturligt att känna”. Några uttrycker att delar av informationen samt enkäterna varit till särskild hjälp, tankar och känslor har väckts som kan vara svåra men som samtidigt beskrivs viktiga i bearbetning av situationen.

Betydelse: Projektet kan ge kunskap om hur stöd i webbaserad form tas emot, om och hur det används och om intervention kan bidra till ökad förberedelse.