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Communication about incurable illness and remaining life between spouses and patients with incurable illness receiving specialized home care: effects of a family caregiver-targeted web-based psycho-educational intervention

BMC Palliative Care volume 23, Article number: 282 (2024) Cite this article

Abstract

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.

Trial registration

The study was first registered on clinicaltrials.gov(NCT03676283) on 2018.09.12.

Peer Review reports

Introduction

Web-based interventions targeted at family caregivers is an expanding field, none the least since an increasing number of patients with serious illness are being cared for at home. The web-based interventions commonly consist of either educational components alone, or educational components alongside psychosocial support of some sort [1]. As opposed to face-to-face interventions, that have been proven beneficial to family caregivers [2], web-based support interventions could be especially suitable for family caregivers of patients with incurable illnesses [3]. There are several web-based interventions targeted at family caregivers of patients with incurable illnesses such as cancer [4] or dementia [5, 6]. The trajectory of an incurable illness, increasing palliative care needs and the approaching end of life and death inevitably impact everyday life for patients at the end of life and their families [7, 8]. Family caregivers of a person with an incurable illness often take on care responsibilities, and the scope of such responsibilities commonly increases as the illness progresses.

Caring for an ill family member has been described as both rewarding [9,10,11] and burdensome [12] and a recent study concluded that both family caregivers and the patients experience uncertainty and feel overwhelmed in the challenging everyday life when living close to, and with, incurable illness [13]. Spousal caregiving is considered the most demanding type of caregiving, primarily because it involves living together and often lasts for extended periods. Spousal caregivers typically experience higher levels of caregiver-related distress compared to caregivers who are adult children [14]. Further, for spouses, higher unmet support needs are associated with poorer quality of life [15]. When living with someone incurably ill, lack of support and confidence in caregiving are recurrently reported by family caregivers [9, 16]. The challenges associated with being a family caregiver can lead to negative consequences, such as ill-health [17]. Hence, many web-based interventions are aimed at improving the family caregivers’ experiences of e.g. caregiver burden, self-efficacy [1, 18] self-esteem, life satisfaction, caregiver strain, social support [1], emotional distress, quality of life [4] and caregiver knowledge [18]. Communication when a close one is suffering from an incurable illness has been described as challenging with several barriers. These include a wish to protect both oneself and the patient from malaise or discomfort, or avoidance of the topic of death due to fear, feeling unready or believing it could even hasten the patient’s death [19]. At the same time, an open communication regarding illness and death prior to the patient’s death has been shown to reduce the risk of bereavement distress in family caregivers of patients with incurable illness [20], which underlines the need for interventions to support communication.

Family caregivers face, and are expected to manage, not only the ill patient’s current situation but also their uncertain future and impending death and its aftermath [21]. In response, interventions are being designed to increase family caregivers’ preparedness for handling challenges associated with caring for, and losing, a close one [22]. There is, to our knowledge, however no research that explores the effects of web-based interventions on communication between incurably ill patients and spouses specifically. Hence, the aim of this study was to explore 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

Design and setting

This study was designed to evaluate a family caregiver-targeted web-based psycho-educational intervention for family caregivers. It had a pre-post design, using questionnaire data. Five specialized home care services in an urban area of a large Swedish city constituted the base for participant recruitment. The services are staffed by multi-disciplinary teams, including registered and assistant nurses, physicians, physiotherapists, occupational therapists, dieticians, and social workers. They provide 24-h-a-day medical care for patients with palliative care needs. The care is provided individually based on each patient’s needs and can vary from home visits once a week, up to home visits several times a day. The Regional Ethical Review Board in Stockholm approved the study prior to its commencement (no. 2018/1893–31; 2019–02242; 2021–00235). The study is registered on clinicaltrials.gov (NCT03676283).

The family caregiver-targeted web-based psycho-educational intervention

The family caregiver-targeted web-based psycho-educational intervention is presented at the website “narstaende.se” [23] (“narstaende” translates approximately to “family caregiver” in English). The intervention is evidence-based and built on previous research [11, 24,25,26,27,28]. As theoretical foundation for the intervention, the framework of family caregivers’ principal needs “knowing, being and doing” by Andershed and Ternestedt [29] served as a guidance. The website was designed and developed in collaboration with healthcare researchers, clinical healthcare professionals, information systems researchers, digital communication strategists, and IT consultants, and is accessible via smartphone, computer, or tablet (Fig. 1).

Fig. 1
figure 1

Development and evaluation of the intervention

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The intervention comprises short videos, informative texts, links to further information and an unmoderated, participant-driven chat forum. Altogether, there are 23 videos, ranging between 2.5 and 8.5 min (Tibell et al., 2022). The website content is structured into three main domains: “Support to you – being a family caregiver,” “how to give support,” and “talk about it,” covering topics such as practical and medical issues, communication, and considerations for the future (Fig. 2).

Fig. 2
figure 2

Examples of content within the three domains at the website “narstaende.se”

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Participants and procedure

Swedish-speaking cohabitating spouses of patients with incurable illness and palliative care needs (both legal adults, ≥ 18 years of age), cared for in specialized home care, were included in the study. Spouse was defined as a wife, husband or partner cohabitating in a shared household with the patient. Eligible spouses were identified via patient medical records by the second author. Information letters for both the patient and spouse were sent via post to the patient, asking for permission to contact the spouse about participation in the study. The letter was shortly followed by a text message to set up a suitable time for a phone call. The spouse was then contacted via telephone by the second author, who provided oral information about the study. If the spouse consented verbally to participate, instructions for registration were given orally or if wished by e-mail. Upon registration at “narstaende.se,” the spouse provided written consent to participate, whereafter the baseline questionnaire was obtained at the website and needed to be answered prior to gaining access to the intervention at the website. After 4 weeks, a follow-up questionnaire was distributed via e-mail (Fig. 3).

Fig. 3
figure 3

Study procedure and timeline

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The questionnaire

The study questionnaire included study-specific questions about demographic data for spouses and patients, the spouses’ health and quality of life (QoL), and conversations with the patient. The single item questions have been developed based on experiences from psychologists, nurses, and physicians, researchers, and bereaved family members. They have previously been validated, using face-to-face methodology, and used in Swedish studies on bereaved family members [24, 30,31,32]. The demographic questions used in the present study included: age, gender, country of birth, educational level, employment status, duration of the relationship with the patient, and time since the patient´s diagnosis. Two questions covered the spouses’ physical and psychological health and one question their overall QoL. These three questions were responded on a seven-point scale, ranging from 0 “worst possible” to 6 “best possible”. To explore the study aim, six questions concerning communication with the patient about their own thoughts and feelings, the incurable illness, aspects of the remaining life and how the illness affects the patient were also used. These are presented in Table S1 (Supplementary material).

Data analysis

Descriptive statistics was used to present demographic data and study variables. Non-ordered categorical data was presented with frequencies and proportions, ordered categorical data with frequencies or medians and quartiles, and continuous data with mean and standard deviations. To explore effects of the intervention, the Wilcoxon signed-rank test was used to compare the pre- and post-assessments, i.e., the six questions about the spouses’ communication with the patient. The non-parametric Wilcoxon signed-rank test was chosen due to ordinal-level data in these variables. Effect sizes were calculated using Cohen’s r (r = Z/√n) [33]. Statistical significance was set at p < 0.05. Descriptive statistical analyses were performed using the SPSS version 27.0 software (IBM Corp., Armonk, NY, USA) and all other analyses were conducted using R version 4.2.2 (R Foundation for Statistical Computing, Vienna, Austria).

Results

Participant characteristics

A total of 39 spouses were included in the present study (Table 1). The youngest participant was 26 years old, whereas the oldest was 79 years (Mdn = 61 years, IQR = 54–71 years), and the majority (n = 26, 67%) were women. Duration of the relationship between spouse and patient ranged from 2 to 54 years (Mdn = 34, IQR = 20–44 years). Time from the patient’s diagnosis varied from a 0 to 19 years (Mdn = 2, IQR = 1–5). Just over a third of the spouses (n = 15, 38%) had a university degree, the rest had attended either nine-year compulsory school or high school-level studies. Most of the participants were born in Sweden (n = 35, 90%). Just short of half of the participants (n = 17, 44%) were employed, a majority of the rest were retired (n = 17, 44%). Descriptively, spouses reported better physical health (Mdn = 4, IQR = 2–5) compared to psychological health and QoL (Mdn = 2, IQR = 2–2) over the past month. At the 4-week follow-up, 8 spouses declined further participation due to the worsening condition or death of the patient, 2 declined without providing a reason. The remaining participants received a follow-up questionnaire, out of which 25 completed it (Table 1).

Table 1 Participant characteristics at baseline and follow-up
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Spouses’ communication with the patient about the illness and the remaining life at baseline

Over one third of the spouses talked with the patient about their thoughts and feelings concerning the illness on a daily basis (n = 15, 38%) (Table 2). Their answers then ranged from “less than once a week” (n = 8, 21%) to “three times a week” (n = 8, 21%). Two participants (5%) never talked about these issues with their ill partner. A majority of the spouses had talked with the patient about the illness’ impact physically and psychologically (n = 25, 64% and n = 30, 77% respectively) during the past month. Further, a majority (n = 25, 64%) also reported having talked about the illness being incurable. The spouses reported that they talked with the patients about the future to varying degrees. Just less than half of the participants (n = 18, 46%) had not discussed how to manage emotionally in the future with the patient during the past month, whereas 21 (54%) spouses reporting having had conversations with the patient about managing emotionally. Conversations about how to manage practically and financially in the future in the past month had not occurred, as reported, for a majority (n = 23, 59%). About one fourth (n = 11, 28%) reported having had these conversations “to some extent”, followed by those who answered “yes, to a great extent” (n = 2, 5%) and “yes, totally” (n = 3, 8%) (Table 2).

Table 2 Communication about the illness and the future at baseline
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Effects of the web-based intervention

No statistically significant effects were found between the baseline and follow-up assessments in any of the questions pertaining to communication (Table 3). However, a small effect size was found in questions 1, 2. 4, 5 and 6, and a medium effect size in question 3, based on Cohen’s r. Although some changes in ratings were seen on individual levels, in question number 3 where the reported ratings dropped from median 3 (IQR = 2–3) to 2 (IQR = 1–3), the ratings remained stable over time.

Table 3 Intervention effects
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Discussion

This study set out to explore effects of a family caregiver-targeted web-based psycho-educational intervention on communication between spouses and patients with incurable illness about the illness and the remaining life in specialized home care. It is – to our best knowledge – the first in its kind to evaluate the effects of a web-based intervention on communication regarding the illness and the future with the patient from a spousal perspective. Following the web-based intervention, no statistically significant effects on the spouses’ communication with the patient about the illness and the future were found. Even if no statistically significant effect was found, a small effect size was found in all questions except for the one on whether the spouse had talked with the patient about how the illness affects them physically, where a medium effect size was found. This could be attributed to a small sample size, where not enough power was obtained to detect a statistically significant effect. A majority of the spouses had talked with the patient about different aspects of the illness and its consequences for themselves and the patient during the past month, already before having access to the web-based intervention. However, the contrary was found for communication regarding the future – where a majority of the spouses instead reported not having had these conversations at all during the past month.

In the present study, it was found that a sizeable proportion of the spouses had not ever talked about one’s own thoughts and feelings, the impact of the illness on the patient, the illness being incurable and how to manage after the patient’s death neither prior to nor following the intervention. Previous research show that conversations about the end-of-life, death, dying and future, are proven to be challenging for both family caregivers and patients with incurable illness, as found in a study on patients with cancer [34] and a recent review including the perspectives of both family caregivers and patients [19]. Similarly, the decision and will to talk or not about the patient’s illness has also been found to vary in previous research [35, 36]. Furthermore, the willingness to communicate openly about the illness and death has been shown to be higher among female spouses than male in the context of incurable cancer [37]. A majority of the spouses who enrolled in the present study were female (67%). It is possible that a study involving communication about incurable illness and the remaining life seemed more appealing to eligible female spouses than male spouses and hence, more females than males choose to enrol. Regardless, discussing the illness and the future may be challenging for both the spouse and the patient but could play an important role in ensuring that both individuals are aware of where the other person stands emotionally and practically. Further, discussions about the future may enable spouses to make important decisions regarding e.g., healthcare, legal and practical matters collaboratively with the patient.

A barrier for both family caregivers [19] and patients [34] to talk about the future is the wish to protect the other one, as well as oneself, from the distress and discomfort that such conversations might evoke. Other barriers for communication regarding the future could be avoidance of emotions generally but also avoidance of the topic of death and death-related matters specifically. This, in turn, could be attributed to e.g. fear, lack of readiness or beliefs that one needs to stay positive or that talking about death might, in fact, hasten death itself or diminish the patient’s will to fight the disease [19]. There are also factors stemming from cultural expectations and religious beliefs that could serve as barriers to communication regarding the end of life between patients and family caregivers, e.g. when the patient does not accept the diagnosis of an incurable illness, when patients or families hope for “a miracle” or for families in cultures when death is not usually talked about [38]. Given that barriers for communication between family caregivers and patients in this context are multi-faceted and multifactorial, it seems reasonable to believe that the lack of effect of the web-based intervention in the present study could possibly devolve upon barriers for communication that have not been addressed prior to, or during, the intervention. This could potentially serve as an important lesson for the continued development of this particular web-based intervention as well as future development of other psycho-educational interventions that aim to support communication about the future in similar contexts. While the development of web-based interventions aiming to support communication between family caregivers and incurably ill patients are important, it is imperative that such interventions also approach these matters sensitively. One way forward might perhaps be addressing barriers to communication directly via the intervention, encouraging family caregivers and patients to maybe engage in conversations about the barriers themselves and how to possibly overcome them. This is already done to some extent in the intervention in the present study, but greater emphasis on this could probably be beneficial. Further, interventions aimed to support communication between family caregivers and incurably ill patients also need to be culturally aware and sensitive and address the diverse needs and wishes of all involved in a variety of cultural contexts. The wide spectrum of communication barriers also underlines the need for qualitative evaluation of interventions, giving participants the opportunity to voice their experiences and potential concerns about the intervention regarding e.g. content and availability.

Prior to getting access to the website, about a third of the spouses in this study had shared their thoughts and feelings about the patient’s illness with the patient daily and a majority did so at least on a weekly basis. Even so, a large proportion of the participants also reported not having talked about how to manage emotionally and practically once the patient had passed away. Previous research shows that end-of-life communication between family members revolves heavily around providing a space for the ill patient to reflect and share their thoughts and feelings [36], which could possibly explain the lack of communication about topics revolving around the spouse’s current and future situation. A significant proportion of the spouses in the present study had not talked with the patient about neither the physical and psychological impact of the illness, nor about the illness being incurable. The same qualitative study by Jeon et al. (2023) found that within some families, family members were hesitant to address and talk about the gravity of the patient’s illness and the end of life out of concern for the patient. Challenges of end-of-life conversations for family caregivers of patients with incurable illness have also been shown in other studies [39, 40]. Sense of failure or removal of hope might hinder this kind of communication [41]. Meanwhile, recent research on communication about the illness and death between patients with incurable illness and their family members show that having had open communication about these matters was associated with reduced bereavement distress [20]. In conclusion, even though the results of the present study, alongside previous research, suggest that there are barriers to communication regarding incurable illness, end of life and death, there are clear implications for interventions that facilitate such communication while also addressing potential communication barriers.

Methodological considerations

A strength of this study is the novelty in delivering web-based psycho-educational support to spouses of patients with incurable illness. In this study, the spouses were recruited when the patient was being cared for in specialized home care. It is to be noted that specialized home care facilities in Sweden promote a holistic approach focused on provision of support, both for the patient and the family caregivers. This might be considered a limitation, as patients and families in this context likely have access to support via their care facility that goes beyond what would be considered “standard treatment” in other care contexts. The results could have been different in another context. Another limitation is the possible skewness of the sample, where all spouses volunteered to participate in the web-based intervention, meaning they had interest in support delivered via a website. Therefore, one could speculate about whether the participants possibly represent a group with technical competence who were able to, and interested in, seeking web-based information and -support. The changes in communication that were seen on individual levels following the intervention could be attributed to a number of things as each question focuses on communication that has taken place during the past month. It is possible that communication that was potentially initiated by the website was not captured within the time window of this study. The sample size in this study is small and the study has no control group, which are limitations of the study. It is, however, the first test and evaluation of this web-based, family caregiver-targeted psycho-educational intervention and its measures, which guided the choice of design for the study. In this study, there was some attrition (n = 14) between baseline and the 4-week follow-up. Even though some attrition is usually expected when conducting studies within in the context of patients with incurable illness, this is a limitation of the study. The amount of missing data was very low (in total, 2 missing values for all questions), therefore no imputation was made. To summarize, larger sample sizes as well as randomized control studies to evaluate web-based psycho-educational support are warranted in the future.

Conclusion

Even if no statistically significant effect of the web-based intervention on communication between spouses and patients was found, this study revealed that a majority of the participating spouses had talked about different aspects of the illness with the ill patient already at baseline. This might indicate that these matters are important to spouses of someone with an incurable illness. However, there was a sizeable proportion of spouses who had not communicated with the patient about the illness both prior to, and following, the intervention. An even bigger proportion of spouses reported not having ever talked to the patient about the remaining life and how to manage once the patient had passed away, neither before nor after the intervention. This might indicate that there are barriers to communication that needs to be further explored and addressed. Further, the findings of this study underline the importance of exploring, acknowledging and addressing the diverse, and perhaps varying, communication support needs of spouses of patients with incurable illnesses.

Data availability

The datasets generated and analysed during the current study are not publicly available due to the General Data Protection Regulations and the Swedish Ethical Review Act, but are available from the corresponding author on reasonable request

References

  1. Ploeg J, Ali MU, Markle-Reid M, Valaitis R, Bartholomew A, Fitzpatrick-Lewis D, et al. Caregiver-focused, web-based interventions: systematic review and meta-analysis (part 2). J Med Internet Res. 2018;20(10):e11247.

    Article  PubMed  PubMed Central  Google Scholar 

  2. Becqué YN, van der Wel M, Aktan-Arslan M, Driel AGV, Rietjens JAC, van der Heide A, et al. Supportive interventions for family caregivers of patients with advanced cancer: A systematic review. Psychooncology. 2023;32(5):663–81.

  3. Finucane AM, O’Donnell H, Lugton J, Gibson-Watt T, Swenson C, Pagliari C. Digital health interventions in palliative care: a systematic meta-review. NPJ digital Med. 2021;4(1):1–10.

    Article  Google Scholar 

  4. Northouse L, Schafenacker A, Barr KL, Katapodi M, Yoon H, Brittain K, et al. A tailored web-based psycho-educational intervention for cancer patients and their family caregivers. Cancer Nurs. 2014;37(5):321.

    Article  PubMed  PubMed Central  Google Scholar 

  5. Bruinsma J, Peetoom K, Bakker C, Boots L, Millenaar J, Verhey F, et al. Tailoring and evaluating the web-based “Partner in Balance” intervention for family caregivers of persons with young-onset dementia. Internet Interv. 2021;25:100390.

    Article  PubMed  PubMed Central  Google Scholar 

  6. Scheibl F, Boots L, Eley R, Fox C, Gracey F, Harrison Dening K, et al. Adapting a Dutch Web-Based Intervention to Support Family Caregivers of People With Dementia in the UK Context: Accelerated Experience-Based Co-Design. JMIR Form Res. 2024;8:e52389.

    Article  PubMed  PubMed Central  Google Scholar 

  7. Grande G, Stajduhar K, Aoun S, Toye C, Funk L, Addington-Hall J, et al. Supporting lay carers in end of life care: current gaps and future priorities. Palliat Med. 2009;23(4):339–44.

    Article  CAS  PubMed  Google Scholar 

  8. Funk LM, Stajduhar KI, Outcalt L. What family caregivers learn when providing care at the end of life: a qualitative secondary analysis of multiple datasets. Palliat Support Care. 2015;13(3):425–33.

    Article  PubMed  Google Scholar 

  9. Alam S, Hannon B, Zimmermann C. Palliative Care for Family Caregivers. J Clin Oncol. 2020;38(9):926–36.

    Article  PubMed  Google Scholar 

  10. Funk L, Stajduhar KI, Toye C, Aoun S, Grande GE, Todd CJ. Part 2: Home-based family caregiving at the end of life: a comprehensive review of published qualitative research (1998–2008). Palliat Med. 2010;24(6):594–607.

    Article  CAS  PubMed  Google Scholar 

  11. Henriksson A, Årestedt K, Benzein E, Ternestedt B-M, Andershed B. Effects of a support group programme for patients with life-threatening illness during ongoing palliative care. Palliat Med. 2013;27(3):257–64.

    Article  PubMed  Google Scholar 

  12. Martín O-L, Saracíbar-Razquin,. The experience of family caregivers caring for a terminal patient at home: A research review. Int J Nurs Stud. 2016;64:1–12.

    Article  PubMed  Google Scholar 

  13. Etkind SN, Li J, Louca J, Hopkins SA, Kuhn I, Spathis A, et al. Total uncertainty: a systematic review and thematic synthesis of experiences of uncertainty in older people with advanced multimorbidity, their informal carers and health professionals. Age Ageing. 2022;51(8):1–11.

  14. Pinquart M, Sörensen S. Spouses, adult children, and children-in-law as caregivers of older adults: a meta-analytic comparison. Psychol Aging. 2011;26(1):1.

    Article  PubMed  PubMed Central  Google Scholar 

  15. Norinder M, Årestedt K, Lind S, Axelsson L, Grande G, Ewing G, et al. Higher levels of unmet support needs in spouses are associated with poorer quality of life–a descriptive cross-sectional study in the context of palliative home care. BMC Palliat Care. 2021;20:1–11.

    Article  Google Scholar 

  16. Soyaslan BD, Oksuz E, editors. Investigation of Caregiver Burden, Anxiety, and Depression in Caregivers of the Palliative Patients According to Certain Variables. Int J Caring Sci. 2022;15(2):1233–41.

  17. Liu Z, Heffernan C, Tan J. Caregiver burden: A concept analysis. Int J Nurs Sci. 2020;7(4):438–45.

    Article  PubMed  PubMed Central  Google Scholar 

  18. Wasilewski MB, Stinson JN, Cameron JI. Web-based health interventions for family caregivers of elderly individuals: A Scoping Review. Int J Med Informatics. 2017;103:109–38.

    Article  Google Scholar 

  19. Nagelschmidt K, Leppin N, Seifart C, Rief W, von Blanckenburg P. Systematic mixed-method review of barriers to end-of-life communication in the family context. BMJ Support Palliat Care. 2021;11(3):253–63.

    Article  PubMed  Google Scholar 

  20. Haaksman M, Ham L, Brom L, Baars A, van Basten JP, van den Borne B, et al. Open communication between patients and relatives about illness & death in advanced cancer-results of the eQuiPe Study. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer. 2024;32(4):214.

    Article  PubMed  Google Scholar 

  21. McDonald H, Browne J, Perruzza J, Svarc R, Davis C, Adams K, et al. Transformative effects of Aboriginal health placements for medical, nursing, and allied health students: A systematic review. Nurs Health Sci. 2018;20(2):154–64.

    Article  PubMed  Google Scholar 

  22. O’Donnell EA, Van Citters AD, Khayal IS, Wilson MM, Gustafson D, Barnato AE, et al. A Web-Based Peer Support Network to Help Care Partners of People With Serious Illness: Co-Design Study. JMIR Hum Factors. 2024;11:e53194.

    Article  PubMed  PubMed Central  Google Scholar 

  23. Tibell LH, Alvariza A, Kreicbergs U, Wallin V, Steineck G, Holm M. Web-based support for spouses of patients with life-threatening illness cared for in specialized home care–A feasibility study. Palliat Support Care. 2022;22(4):1–9.

  24. Hauksdóttir A, Steineck G, Fürst CJ, Valdimarsdóttir U. Long-term harm of low preparedness for a wife’s death from cancer—a population-based study of widowers 4–5 years after the loss. Am J Epidemiol. 2010;172(4):389–96.

    Article  PubMed  Google Scholar 

  25. Hauksdóttir A, Valdimarsdóttir U, Fürst CJ, Steineck G. Long-term mental health of men who lose a wife to cancer—a population-based follow-up. Psychooncology. 2013;22(2):352–61.

    Article  PubMed  Google Scholar 

  26. Holm M, Årestedt K, Carlander I, Fürst CJ, Wengström Y, Öhlen J, et al. Short-term and long-term effects of a psycho-educational group intervention for family caregivers in palliative home care–results from a randomized control trial. Psychooncology. 2016;25(7):795–802.

    Article  PubMed  Google Scholar 

  27. Holm M, Carlander I, Fürst C-J, Wengström Y, Årestedt K, Öhlen J, et al. Delivering and participating in a psycho-educational intervention for family caregivers during palliative home care: a qualitative study from the perspectives of health professionals and family caregivers. BMC Palliat Care. 2015;14(1):1–10.

    Article  Google Scholar 

  28. Valdimarsdóttir U, Helgason ÁR, Fürst C-J, Adolfsson J, Steineck G. Long-term effects of widowhood after terminal cancer: a Swedish nationwide follow-up. Scandinavian J pub health. 2003;31(1):31–6.

    Article  PubMed  Google Scholar 

  29. Andershed B, Ternestedt B-M. Development of a theoretical framework describing relatives’ involvement in palliative care. J Adv Nurs. 2001;34(4):554–62.

    Article  CAS  PubMed  Google Scholar 

  30. Jonasson JM, Hauksdóttir A, Nemes S, Surkan PJ, Valdimarsdóttir U, Onelöv E, et al. Couples' communication before the wife's death to cancer and the widower's feelings of guilt or regret after the loss - a population-based investigation. European journal of cancer (Oxford, England : 1990). 2011;47(10):1564–70.

  31. Omerov P, Steineck G, Runeson B, Christensson A, Kreicbergs U, Pettersén R, et al. Preparatory studies to a population-based survey of suicide-bereaved parents in Sweden. Crisis. 2013;34(3):200–10.

    Article  PubMed  Google Scholar 

  32. Valdimarsdóttir U, Helgason ÁR, Fürst C-J, Adolfsson J, Steineck G. Awareness of husband’s impending death from cancer and long-term anxiety in widowhood: a nationwide follow-up. Palliat Med. 2004;18(5):432–43.

    Article  PubMed  Google Scholar 

  33. Cohen J. Statistical power analysis for the behavioral sciences (2nd ed.). Hillsdale, NJ: Lawrence Erlbaum; 1988.

  34. An E, Wennberg E, Nissim R, Lo C, Hales S, Rodin G. Death talk and relief of death-related distress in patients with advanced cancer. BMJ Support Palliat Care. 2020;10(2):e19.

    Article  PubMed  Google Scholar 

  35. Öhrling C, Benkel I, Molander U, Sernbo E, Olsson A, Nyblom S. Sharing Bad News: Communication Between Patients and Their Loved Ones in a Palliative Care Context. Am J Hosp Palliat Med®. 2023;40(10):1141–6.

    Google Scholar 

  36. Jeon H, Kim S, Lee I. “The communication I had with him back then is still stuck in my mind.” Bereaved families of cancer patients’ experiences for end-of-life communication. Supportive Care in Cancer. 2023;31(5):277.

    Article  PubMed  PubMed Central  Google Scholar 

  37. Carmel S, Singer Y, Yosef-Sela N, Bachner YG. Open communication between caregivers’ and terminally ill cancer patients about illness and death: The role of gender - A correlational study. Eur J Oncol Nurs. 2020;49:1–6.

  38. Islam Z, Pollock K, Patterson A, Hanjari M, Wallace L, Mururajani I, Conroy S, Faull C. Thinking ahead about medical treatments in advanced illness: a qualitative study of barriers and enablers in end-of-life care planning with patients and families from ethnically diverse backgrounds. Health Soc Care Deliv Res. 2023;11(7):1–135.

    Article  PubMed  Google Scholar 

  39. Fenton A, Fletcher KM, Kizildag D, Borstelmann NA, Kessler D, Cronin C, et al. Cancer Caregivers’ Prognostic and End-of-Life Communication Needs and Experiences and their Impact. J Pain Symptom Manage. 2023;65(1):16–25.

    Article  PubMed  Google Scholar 

  40. Im J, Mak S, Upshur R, Steinberg L, Kuluski K. “Whatever happens, happens” challenges of end-of-life communication from the perspective of older adults and family caregivers: a Qualitative study. BMC Palliat Care. 2019;18(1):113.

    Article  PubMed  PubMed Central  Google Scholar 

  41. Sallnow L, Smith R, Ahmedzai SH, Bhadelia A, Chamberlain C, Cong Y, et al. Report of the Lancet Commission on the Value of Death: bringing death back into life. Lancet. 2022;399(10327):837–84.

    Article  Google Scholar 

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Acknowledgements

The authors wish to thank all of the family caregivers who participated in this study and shared their valuable experiences of the web-based intervention. The authors also wish to thank the late professor Gunnar Steineck for his earlier work leading to the development of the website narstaende.se and the formation of the research group.

Funding

Open access funding provided by Sophiahemmet University College. This study was funded by the Swedish Research Council [2021-00860] and the Swedish Cancer Society [21 1385 Pj].

Author information

Authors and Affiliations

  1. Department of Nursing Science, Sophiahemmet University, Box 5605, Stockholm, 114 86, Sweden

    Sandra Doveson & Maja Holm

  2. The Department of Health Care Science, Marie Cederschiöld University, Stockholm, Sweden

    Sandra Doveson, Louise Häger Tibell, Maja Holm, Ulrika Kreicbergs, Anette Alvariza & Viktoria Wallin

  3. Tema Cancer, BES: Breast-Endocrine Tumours and Sarcoma, Karolinska University Hospital, Stockholm, Sweden

    Louise Häger Tibell

  4. Faculty of Health and Life Sciences, Linnaeus University, Kalmar, Sweden

    Kristofer Årestedt

  5. Louis Dundas Centre, Great Ormond Street Institute of Child Health, University College London, London, UK

    Ulrika Kreicbergs

  6. Department of Women’s and Children’s Health, Karolinska Institutet, Stockholm, Sweden

    Ulrika Kreicbergs

  7. Research and Development-Unit/Palliative Care, Stockholms Sjukhem, Stockholm, Sweden

    Anette Alvariza

  8. Department of Research, Region Kalmar County, Kalmar, Sweden

    Kristofer Årestedt

Authors
  1. Sandra Doveson
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  2. Louise Häger Tibell
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  3. Kristofer Årestedt
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  4. Maja Holm
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  5. Ulrika Kreicbergs
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  6. Anette Alvariza
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  7. Viktoria Wallin
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Contributions

LHT, KÅ, MH, UK, and AA planned the study and LHT was responsible for participant recruitment. KÅ performed statistical analyses, which were planned and interpreted collaboratively with SD, AA and VW. SD drafted the first manuscript and was then responsible for further revising with support from all the other authors. All authors read and approved the final manuscript prior to submission.

Corresponding author

Correspondence to Sandra Doveson.

Ethics declarations

Ethics approval and consent to participate

The Regional Ethical Review Board in Stockholm, Sweden, approved the study prior to its commencement (no. 2018/1893–31; 2019–02242; 2021–00235). Written, informed consent to participate was obtained from all participants.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.

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Doveson, S., Tibell, L.H., Årestedt, K. et al. Communication about incurable illness and remaining life between spouses and patients with incurable illness receiving specialized home care: effects of a family caregiver-targeted web-based psycho-educational intervention. BMC Palliat Care 23, 282 (2024). https://doiorg.publicaciones.saludcastillayleon.es/10.1186/s12904-024-01614-0

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  • DOI: https://doiorg.publicaciones.saludcastillayleon.es/10.1186/s12904-024-01614-0

Keywords

BMC Palliative Care

ISSN: 1472-684X

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