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Abstract Background Bereaved relatives of intensive care unit (ICU) patients are at increased risk of psychological complaints. Aftercare might help them cope with processing the ICU admission and their loved one’s death. There is little (qualitative) evidence on how bereaved relatives experience aftercare. Also, the COVID-19 pandemic likely impacted aftercare provision. We aim to examine how many relatives in Dutch ICUs received aftercare before and during the pandemic and to qualitatively describe their experiences and needs regarding aftercare. Methods A mixed-methods study among relatives of patients who died in an ICU before or during the COVID-19 pandemic. Bereaved relatives in six ICUs completed a questionnaire (n = 90), including two items on aftercare. These were analyzed using descriptive statistics and Chi-squared tests. Subsequently, both relatives that received and relatives that did not receive aftercare were interviewed about their experiences and needs regarding aftercare. The interviews were thematically analyzed. Results After the passing of a loved one, 44% of the relatives were asked by a healthcare professional from the hospital how they were doing, and 26% had had a follow-up conversation. Both happened more often during the first wave of the pandemic than during the second wave or before the pandemic. The most common reason for not having had a follow-up conversation was not knowing about this option (44%), followed by not feeling a need (26%). Regarding the latter, interviewed relatives explained that this would not revive their loved one or that they had already discussed everything they wanted. Relatives who wanted a follow-up conversation, wanted this because this would help them realize the severity of their loved one’s illness, to exchange personal experiences, and/or to thank the ICU team. Those with a follow-up conversation said that they had reviewed the medical course of the admission and/or discussed their (mental) well-being. Conclusions ICU healthcare professionals may play a vital role in addressing aftercare needs by asking relatives how they are doing in the weeks following the death of their loved one and offering them a follow-up conversation with an ICU physician. We recommend to include aftercare for bereaved relatives in ICU guidelines.

Abstract Background In the intensive care unit (ICU) relatives play a crucial role as surrogate decision-makers, since most patients cannot communicate due to their illness and treatment. Their level of involvement in decision-making can affect their psychological well-being. During the COVID-19 pandemic, relatives’ involvement probably changed. We aim to investigate relatives’ involvement in decision-making in the ICU before and during the pandemic and their experiences and preferences in this regard. Methods A mixed-methods study among relatives of ICU patients admitted to an ICU before or during the COVID-19 pandemic. Relatives in six ICUs completed a questionnaire (n = 329), including two items on decision-making. These were analysed using descriptive statistics and logistic regression analyses. Subsequently, relatives (n = 24) were interviewed about their experiences and preferences regarding decision-making. Thematic analysis was used for analysing the qualitative data. Results Nearly 55% of the relatives indicated they were at least occasionally asked to be involved in important treatment decisions and of these relatives 97.1% reported to have had enough time to discuss questions and concerns when important decisions were to be made. During the first COVID-19 wave relatives were significantly less likely to be involved in decision-making compared to relatives from pre-COVID-19. The interviews showed that involvement varied from being informed about an already made decision to deliberation about the best treatment option. Preferences for involvement also varied, with some relatives preferring no involvement due to a perceived lack of expertise and others preferring an active role as the patient’s advocate. Discussing a patient’s quality of life was appreciated by relatives, and according to relatives healthcare professionals also found this valuable. In some cases the preferred and actual involvement was in discordance, preferring either a larger or a smaller role. Conclusions As treatment alignment with a patient’s values and preferences and accordance between preferred and actual involvement in decision-making is very important, we suggest that the treatment decision-making process should start with discussions about a patient’s quality of life, followed by tailoring the process to relatives’ preferences as much as possible. Healthcare professionals should be aware of relatives’ heterogeneous and possibly changing preferences regarding the decision-making process.

Abstract Background Support for relatives is highly important in the intensive care unit (ICU). During the first COVID-19 wave support for relatives had to be changed considerably. The alternative support could have decreased the quality and sense of support. We aimed to evaluate how support for relatives in Dutch ICUs was organised during the first COVID-19 wave and how this was experienced by these relatives in comparison to relatives from pre-COVID-19 and the second wave. Additionally, we aimed to investigate which elements of support are associated with positive experiences. Methods We performed a cross-sectional multicentre cohort study in six Dutch ICUs in the Netherlands. Written questionnaires were distributed among relatives of ICU patients from pre-COVID-19, the first wave and the second wave. The questionnaire included questions on demographics, the organisation of support, and the experiences and satisfaction of relatives with the support. Results A total of 329 relatives completed the questionnaire (52% partner, 72% woman and 63% ICU stay of 11 days or longer). Support for relatives of ICU patients during the first COVID-19 wave differed significantly from pre-COVID-19 and the second wave. Differences were found in all categories of elements of support: who, when, how and what. Overall, relatives from the three time periods were very positive about the support. The only difference in satisfaction between the three time periods, was the higher proportion of relatives indicating that healthcare professionals had enough time for them during the first wave. Elements of support which were associated with many positive experiences and satisfaction were: fixed timeslot, receiving information (e.g. leaflets) on ≥ 2 topics, discussing > 5 topics with healthcare professionals, and being offered emotional support. Conclusions Although, support for relatives in the ICU changed considerably during the COVID-19 pandemic, relatives were still positive about this support. The altered support gave insight into avenues for improvement for future comparable situations as well as for normal daily ICU practice: e.g. daily contact at a fixed timeslot, offering video calling between patients and relatives, and offering emotional support. ICUs should consider which elements need improvement in their practice.

Abstract Background Palliative care provision for persons experiencing homelessness is often poor. A threefold consultation service intervention was expected to increase knowledge of palliative care and multidisciplinary collaboration, and improve palliative care for this population. This intervention comprised: 1) consultation of social service professionals by palliative care specialists and vice versa; 2) multidisciplinary meetings with these professionals; and 3) training and education of these professionals. We aimed to evaluate the implementation process and its barriers and facilitators of this service implemented within social services and healthcare organizations in three Dutch regions. Methods A process evaluation using structured questionnaires among consultants, semi-structured individual and group interviews among professionals involved, and (research) diaries. Qualitative data were analysed using thematic analysis. The process evaluation was structured using the Reach, Adoption, Implementation and Maintenance dimensions of the RE-AIM framework. Results All three regions adopted all three activities of the intervention, with differences between the three regions in the start, timing and frequency. During the 21-month implementation period there were 34 consultations, 22 multidisciplinary meetings and 9 training sessions. The professionals reached were mainly social service professionals. Facilitators for adoption of the service were a perceived need for improving palliative care provision and previous acquaintance with other professionals involved, while professionals’ limited skills in recognizing, discussing and prioritizing palliative care hindered adoption. Implementation was facilitated by a consultant’s expertise in advising professionals and working with persons experiencing homelessness, and hindered by COVID-19 circumstances, staff shortages and lack of knowledge of palliative care in social service facilities. Embedding the service in regular, properly funded meetings was expected to facilitate maintenance, while the limited number of persons involved in this small-scale service was expected to be an obstacle. Conclusions A threefold intervention aimed at improving palliative care for persons experiencing homelessness is evaluated as being most usable when tailored to specific regions, with bedside and telephone consultations and a combination of palliative care consultants and teams of social service professionals. It is recommended to further implement this region-tailored intervention with palliative care consultants in the lead, and to raise awareness and to remove fear of palliative care provision.

Abstract Background Palliative care for persons experiencing homelessness who reside in social service facilities is often late or lacking. A threefold intervention was implemented to improve palliative care for this population by increasing knowledge and collaboration between social service and palliative care professionals. This consultation service comprised: 1) consultations between social service professionals and palliative care professionals; 2) multidisciplinary meetings involving these professionals; and 3) training of these professionals. This study aims to evaluate the perceived added value of this threefold consultation service in three regions in the Netherlands. Methods A mixed-methods evaluation study using structured questionnaires for consultants, requesting consultants, and attendees of multidisciplinary meetings, semi-structured group and individual interviews with social service and palliative care professionals involved, weekly diaries filled out by consultants, and an implementation diary. Qualitative data were analyzed following the principles of thematic analysis. Quantitative data were analyzed descriptively. Results Thirty-four consultations, 22 multidisciplinary meetings and 9 training sessions were studied during the implementation period of 21 months. Social service professionals made up the majority of all professionals reached by the intervention. In all regions the intervention was perceived to have added value for collaboration and networks of social service and palliative care professionals (connecting disciplines reciprocally and strengthening collaborations), the competences of especially social service professionals involved (competency in palliative care provision, feeling emotionally supported in complex situations), and the quality and timing of palliative care (more focus on quality of life and dying, advance care planning and looking ahead, and greater awareness of death and palliative care). Conclusions The threefold consultation service particularly helps social service professionals connect with palliative care professionals. It helps them to identify palliative care needs in good time and to provide qualitatively better palliative care to persons experiencing homelessness.

Abstract Background During the first peak of the COVID-19 pandemic in the Netherlands, relatives of patients with COVID-19 admitted to Intensive Care Units (ICUs) were severely restricted in visiting their relatives and in communicating with treating physicians. Family communication is a core element of critical care, however, this pandemic forced medical ICU staff to arrange alternative family support for instance by Family Support Teams (FSTs), consisting of non-ICU affiliated staff who telephonically contacted relatives. This study aims to examine relatives’ experiences with FSTs on two ICUs of a Dutch university medical centre, and to evaluate its working strategies. . Methods In a semi-structured interview study, relatives of patients with COVID-19 admitted to ICU’s, who had been supported by the FSTs, were sampled purposively. Twenty-one interviews were conducted telephonically by three researchers. All interviews were topic list guided and audio-recorded. Data was analysed thematically. Results All participants indicated they went through a rough time. Almost all evaluated the FSTs positively. Four major themes were identified. First, three important pillars of the FSTs were providing relatives with transparency about the patients’ situation, providing attention to relatives’ well-being, and providing predictability and certainty by calling on a daily basis in a period characterised by insecurity. Second, relatives appeared to fulfil their information needs by calls of the FSTs, but also by calling the attending ICU nurse. Information provided by the FSTs was associated with details and reliability, information provided by nurses was associated with the patient’s daily care. Third, being a primary family contact was generally experienced as both valuable and as an emotional burden. Last, participants missed proper aftercare. Family support often stopped directly after the patient died or had left the ICU. Relatives expressed a need for extended support after that moment since they had strong emotions after discharge or death of the patient. Conclusions Family support in times of the extreme COVID-19 situation is important, as relatives are restricted in communication and have a strong need for information and support. Relatives feel encouraged by structure, frequency, support and understanding by FSTs. However, remote family support should be tailored to the needs of relatives. A fixed contact person on de ICU and video calling might be good extra options for family support, also in future post COVID-19 care, but cannot replace physical visits.

Abstract Background Population ageing, an emphasis on home-based care of palliative patients and policies aimed at prolonging participation in the labour market are placing a growing demand on working family caregivers. This study aimed to provide insight into experiences with combining paid work and family care for patients at the end of life, factors facilitating and hindering this combination, and support needs. Method Semi-structured interviews were held between July 2018 and July 2019 with 18 working family caregivers of patients with a life-threatening illness who were living at home. Transcripts were analysed following the principles of thematic analysis. Results Some family caregivers could combine paid work and family care successfully, while this combination was burdensome for others. Family caregivers generally experienced a similar process in which four domains — caregiver characteristics, the care situation, the work situation and the context — influenced their experiences, feelings and needs regarding either the combination of paid work and care or the care situation in itself. In turn, experiences, feelings and needs sometimes affected health and wellbeing, or prompted caregivers to take actions or strategies to improve the situation. Changes in health and wellbeing could affect the situation in the four domains. Good health, flexibility and support at work, support from healthcare professionals and sharing care tasks were important in helping balance work and care responsibilities. Some caregivers felt ‘sandwiched’ between work and care and reported physical or mental health complaints. Conclusions Experiences with combining paid work and family care at the end of life are diverse and depend on several factors. If too many factors are out of balance, family caregivers experience stress and this impacts their health and wellbeing. Family caregivers could be better supported in this by healthcare professionals, employers and local authorities.

Abstract Background Palliative care should be holistic, but spiritual issues are often overlooked. General practitioners and nurses working together in PaTz-groups (palliative home care groups) consider spiritual issues in palliative care to be relevant, but experience barriers in addressing spiritual issues and finding spiritual caregivers. This study evaluates the feasibility and perceived added value of a listening consultation service by spiritual caregivers in primary palliative care. Methods From December 2018 until September 2019, we piloted a listening consultation service in which spiritual caregivers joined 3 PaTz-groups whose members referred patients or their relatives with spiritual care needs to them. Evaluation occurred through (i) monitoring of the implementation, (ii) in-depth interviews with patients (n = 5) and involved spiritual caregivers (n = 5), (iii) short group interviews in 3 PaTz-groups (17 GPs, 10 nurses and 3 palliative consultants), and (iv) questionnaires filled out by the GP after each referral, and by the spiritual caregiver after each consultation. Data was analysed thematically and descriptively. Results Consultations mostly took place on appointment at the patients home instead of originally intended walk-in consultation hours. Consultations were most often with relatives (72%), followed by patients and relatives together (17%) and patients (11%). Relatives also had more consecutive consultations (mean 4.1 compared to 2.2 for patients). Consultations were on existential and relational issues, loss, grief and identity were main themes. Start-up of the referrals took more time and effort than expected. In time, several GPs of each PaTz-group referred patients to the spiritual caregiver. In general, consultations and joint PaTz-meetings were experienced as of added value. All patients and relatives as well as several GPs and nurses experienced more attention for and awareness of the spiritual domain. Patients and relatives particularly valued professional support of spiritual caregivers, as well as recognition of grief as an normal aspect of life. Conclusions If sufficient effort is given to implementation, listening consultation services can be a good method for PaTz-groups to find and cooperate with spiritual caregivers, as well as for integrating spiritual care in primary palliative care. This may strengthen care in the spiritual domain, especially for relatives who are mourning.

Abstract Background Because of their poor health and social vulnerability, homeless people require specific care. However, due to care avoidance, homeless people are often not involved in care. This study aims to get insights into reasons for and kinds of care avoidance among homeless people and to provide suggestions to reach this target group. Methods Semi-structured individual interviews were conducted among street pastors (n = 9), spiritual caregivers (n = 9), homeless outreach workers (n = 7) and formerly homeless people (n = 3). Participants were recruited by purposive sampling in the four major cities in the Netherlands (Amsterdam, Utrecht, Rotterdam, The Hague). The verbatim transcripts were analysed using thematic analysis. Results The term care avoidance was perceived as stigmatizing. Care avoidance is found to be related to characteristics of the homeless person (e.g. having complex problems, other priorities) as well as of the system (e.g. complex system, conditions and requirements of organizations). The person-related characteristics suggestions to involve homeless persons include tailoring care and building relationships, which might even be prioritised over starting care interventions. Setting limits on behaviour without rejecting the person, and an attitude reflecting humanity, dignity and equality were also important factors in making care more accessible and lasting. As regards system-related characteristics, the suggestions include clear information and communication to homeless people who avoid care as being crucial in order to make care more accessible. Other suggestions include quiet and less busy shelters, a non-threatening attitude and treatment by professionals, self-reflection by professionals and finally a change of policy and legislation regarding available time. Conclusions Reasons for care avoidance can be found in the interplay between both the individual and the system; measures to reduce care avoidance should be taken at both levels. These measures are centred on lowering the barriers to care inter alia by incorporating building trust and understanding into the care provided.

Abstract Background Homeless people often suffer from complex and chronic comorbidities, have high rates of morbidity and die at much younger ages than the general population. Due to a complex combination of physical, psychosocial and addiction problems at the end of life, they often have limited access to palliative care. Both the homeless and healthcare providers experience a lot of barriers. Therefore, providing palliative care that fits the needs and concerns of the homeless is a challenge to healthcare providers. This systematic review aims to summarize evidence about the concerns, palliative care needs and preferences of homeless people, as well as barriers and facilitators for delivering high quality palliative care. Methods PubMed, Embase, PsycINFO, CINAHL and Web of Science were searched up to 10 May 2016. Included were studies about homeless people with a short life expectancy, their palliative care needs and the palliative care provided, that were conducted in Western countries. Data were independently extracted by two researchers using a predefined extraction form. Quality was assessed using a Critical Appraisal instrument. The systematic literature review was based on the PRISMA statement. Results Twenty-seven publications from 23 different studies met the inclusion criteria; 15 studies were qualitative and eight were quantitative. Concerns of the homeless often related to end-of-life care not being a priority, drug dependence hindering adequate care, limited insight into their condition and little support from family and relatives. Barriers and facilitators often concerned the attitude of healthcare professionals towards homeless people. A respectful approach and respect for dignity proved to be important in good quality palliative care. Conclusions A patient-centred, flexible and low-threshold approach embodying awareness of the concerns of homeless people is needed so that appropriate palliative care can be provided timely. Training, education and experience of professionals can help to accomplish this.