Objective
To explore the experiences of patients with advanced cancer regarding the timing of ACP.

Methods
This secondary analysis used data from the ACTION cluster-randomized clinical trial. 288 patients with advanced lung or colorectal cancer, WHO performance status 0–3, and with a minimum life expectancy of 3 months were included in this analysis.

Results
The mean time between patients’ cancer diagnosis and the first ACP conversation was 15.3 months (SD:19.4). The average duration from current cancer stage diagnosis to the first conversation was 8.9 months (SD:10.7). The timing of the conversation was perceived as “just right” by 217 (75.3 %) of the patients. Patients who perceived the timing as “too early” were more recently diagnosed with cancer (9.1 months) or with their current cancer stage (5.7 months) than those who did not. Patients perceiving the timing as “too late” had shorter estimated survival times.

Conclusion
Patients with advanced cancer may benefit from earlier ACP than what is currently typically initiated in clinical practice.

Practice implications
When initiating ACP conversations, several aspects should be considered, including patients’ gender, their socio-cultural environment, and their ability to perform daily activities, with or without limitations.@en

Background:
The implementation of eHealth applications often fails. The NASSS (nonadoption, abandonment, scale-up, spread, and sustainability) framework aims to identify complexities in eHealth applications; the more complex, the more risk of implementation failure.

Objective:
This study aimed to analyze the implementation of the web-based advance care planning (ACP) program “Explore Your Preferences for Treatment and Care” using the NASSS framework.

Methods:
The NASSS framework enables a systematic approach to improve the implementation of eHealth tools. It is aimed at generating a rich and situated analysis of complexities in multiple domains, based on thematic analysis of existing and newly collected data. It also aims at supporting individuals and organizations to handle these complexities. We used 6 of 7 domains of the NASSS framework (ie, condition, technology, value proposition, adopters, external context, and embedding and adaptation over time) leaving out “organization,” and analyzed the multimodal dataset of a web-based ACP program, its development and evaluation, including peer-reviewed publications, notes of stakeholder group meetings, and interviews with stakeholders.

Results:
This study showed that the web-based ACP program uses straightforward technology, is embedded in a well-established web-based health platform, and in general appears to generate a positive value for stakeholders. A complexity is the rather broad target population of the program. A potential complexity considers the limited insight into the extent to which health care professionals adopt the program. Awareness of the relevance of the web-based ACP program may still be improved among target populations of ACP and among health care professionals. Furthermore, the program may especially appeal to those who value individual autonomy, self-management, and an explicit and direct communicative approach.

Conclusions:
Relatively few complexities were identified considering the implementation of the web-based ACP program “Explore Your Preferences for Treatment and Care.” The program is evidence-based, freestanding, and well-maintained, with straightforward, well-understood technology. The program is expected to generate a positive value for different stakeholders. Complexities include the broad target population of the program and sociocultural factors. People with limited digital literacy may need support to use the program. Its uptake might be improved by increasing awareness of ACP and the program among a wider population of potential users and among health care professionals. Addressing these issues may guide future use and sustainability of the program.@en

Aim
To evaluate the failed implementation of the Carer Support Needs Assessment Tool Intervention for family caregivers in end-of-life care, within a trial context using Normalization Process Theory (NPT).

Design
An evaluation study was conducted to learn lessons from our trial, which was not successful due to the low number of participants. The evaluation study utilized various data sources, including published data from interviews and questionnaires, and unpublished data derived from emails and conversation notes.

Methods
Data were retrospectively collected. Thematic analysis was conducted guided by the NPT framework. This framework emphasizes that successful implementation of an intervention relies on its ‘normalization’, consisting of four constructs: coherence, cognitive participation, collective action and reflexive monitoring.

Results
Coherence (sense making): Nurses felt the intervention could contribute to their competence in assessing family caregivers' needs, but some were unsure how it differed from usual practice.

Cognitive participation (relational work): Nurse champions played a crucial role in building a community of practice. However, sustaining this community was challenging due to staff turnover and shortages.

Collective action (work done to enable the intervention): Nurses felt the Carer Support Needs Assessment Tool training enabled them to improve their support of family caregivers. However, contextual factors complicated implementation, such as being used to a patient rather than a family-focused approach and a high workload.

Reflexive monitoring (appraisal of the intervention): Positive experiences of the nurses with the intervention motivated them to implement it. However, the research context made nurses hesitant to recruit family caregivers because of the potential burden of participation.

Conclusion
Although the intervention demonstrated potential to assist nurses in providing tailored support to family caregivers, its integration into daily practice was not optimal. Contextual factors, such as a patient-focused approach to care and the research context, hampered normalization of the intervention.

Implications for the Profession and/or Patient Care
Assessing and considering contextual factors that may influence implementation of a complex care intervention is needed. The NPT provided a valuable framework for evaluating the implementation process in our study.

Impact
What problem did the study address? This evaluation study analysed the factors that promoted or hindered the implementation of a nursing intervention to support family caregivers in end-of-life care.

What were the main findings? Both the intervention and the intervention training have potential and value for nurses in providing tailored support to family caregivers. However, the implementation faced challenges due to organizational factors and the research context, including recruitment.

Where and on whom will the research have an impact? This insight is valuable for all stakeholders involved in implementing complex nursing interventions, including researchers, nurses and funders.

Reporting Method
This study has adhered to the relevant EQUATOR guidelines: Standards for Reporting Qualitative Research (SRQR).

Patient or Public Contribution
There was no patient or public involved.

Trial Registration
The trial was prospectively registered on the Dutch Trial Register (NL7702).@en

Objective: Family caregivers are often intensively involved in palliative and end-of-life cancer care. A variety of interventions to support family caregivers have been developed, differing in target population, modality, and components. We aimed to systematically examine characteristics and the effectiveness of interventions to support family caregivers of patients with advanced cancer. Methods: A systematic review was conducted using Embase, Medline Ovid, Web of Science, Cochrane, Google Scholar, and Cinahl. This review included quantitative studies published from January 2004 until January 2020 reporting on interventions to support family caregivers of patients with advanced cancer in all care settings. Results: Out of 7957 titles, 32 studies were included. Twenty-two studies were randomized controlled trials. Interventions were delivered to four target populations: individual family caregivers (n = 15), family caregiver-patient dyads (n = 11), families (n = 2) and peer groups (n = 4). Most interventions (n = 26) were delivered face-to-face or by phone, two were delivered online. Most interventions included multiple components and were primarily aimed at supporting family caregivers' self-care. Twenty-nine interventions were shown to have beneficial effects on family caregiver outcomes, mostly in the psycho-emotional (n = 24), daily functioning (n = 13) and social dimension (n = 6). Individual interventions were mainly effective in the psycho-emotional dimension, dyad and family interventions in the psycho-emotional and social domain, and group interventions mainly had an effect on daily functioning. Conclusions: Interventions to support family caregivers in advanced cancer care vary widely. Most intervention studies reported beneficial effects for the wellbeing of family caregivers. There is evidence that the target group is associated with beneficial effects on different outcome dimensions.

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Background: The incidence of continuous deep sedation (CDS) has more than doubled over the last decade in The Netherlands, while reasons for this increase are not fully understood. Patients and relatives have an essential role in deciding on CDS. We hypothesize that the increase in CDS practice is related to the changing role of patients and relatives in deciding on CDS. Objective: To describe perceptions and experiences of patients and relatives with regard to CDS. This insight may help professionals and policymakers to better understand and respond to the evolving practice of CDS. Methods: Qualitative interviews were held with patients and relatives who had either personal experience with CDS as a relative or had contemplated CDS for themselves. Results: The vast majority of respondents appreciated CDS as a palliative care option, and none of the respondents reported (moral) objections to CDS. The majority of respondents prioritized avoiding suffering at the end of life. The patients and families generally considered CDS a palliative care option for which they can choose. Likewise, according to our respondents, the decision to start CDS was made by them, instead of the physician. Negative experiences with CDS care were mostly related to loss of sense of agency, due to insufficient communication or information provision by healthcare professionals. Lack of continuity of care was also a source of distress. We observed a variety in the respondents' understanding of the distinction between CDS and other end-of-life care decisions, including euthanasia. Some perceived CDS as hastening death. Conclusion: The traditional view of CDS as a last resort option for a physician to relieve a patient's suffering at the end of life is not explicit among patients and relatives. Instead, our results show that they perceive CDS as a regular palliative care option. Along with this normalization of CDS, patients and relatives claim a substantial say in the decision-making and are mainly motivated by a wish to avoid suffering and exercise control at the end of life. These distinct views on CDS of patients, their relatives and healthcare providers should be reconciled in guidelines and protocols for CDS. Patient or Public Contribution: One of the authors in our team (G. H.) has experience with CDS as a relative and ensured that the patient/relative viewpoint was adequately reflected in the design and conduct of our study. In the preliminary phase of our study, G. H. adjusted the topic list so it was better adapted to the current practice of CDS. During the data analysis, G. H. read several interviews and took part in the open and critical discussion on central themes and core concepts as an important member of the author team, thereby guaranteeing the central position of the patient/relative perspective in our final research outcome.

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Background: Acculturation is the process of two different cultures coming into contact. It is unclear how acculturation influences Chinese immigrants’ engagement in advance care planning due to the complexity and multifaceted nature of both acculturation and advance care planning. Aims: To synthesize evidence regarding the role of Chinese immigrants’ acculturation in their engagement in advance care planning. Design: Systematic mixed-method review, registered in PROSPERO (CRD42021231822). Data sources: EMBASE, MEDLINE, Web of Science, and Google Scholar were searched for publications until January 21, 2021. Results: Twenty-one out of 1112 identified articles were included in the analysis. Of those 21 articles, 17 had a qualitative design and 13 originated from the United States. Three of four quantitative studies reported that higher acculturation levels were associated with better knowledge or higher rate of engagement in advance care planning. Analysis of qualitative studies showed that Chinese immigrants’ engagement in advance care planning was associated with their: (1) self-perceived cultural identity (native or non-native); (2) interpretation of filial piety (traditional or modern); and (3) interpretation of autonomy (individual or familial). To facilitate their engagement, Chinese immigrants prefer an implicit approach, non-family-related initiators, contextualization advance care planning in Chinese culture and using Chinese language. Conclusion: Chinese immigrants’ willingness to engage in advance care planning varied with their acculturation level. To engage them in advance care planning, we recommend adapting the introduction of advance care planning to address people’s perceptions of their cultural identity, filial piety, and autonomy, as well as their preference for certain approach, initiator, context, and language.

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