Evaluating the perceived added value of a threefold intervention to improve palliative care for persons experiencing homelessness:A mixed-method study among social service and palliative care professionals

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

Experiences with and needs for aftercare following the death of a loved one in the ICU:a mixed-methods study among bereaved relatives

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.</p

Experiences with and needs for aftercare following the death of a loved one in the ICU:a mixed-methods study among bereaved relatives

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.</p

Varying (preferred) levels of involvement in treatment decision-making in the intensive care unit before and during the COVID-19 pandemic:a mixed-methods study among relatives

BackgroundIn 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.MethodsA 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.ResultsNearly 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.ConclusionsAs 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

Care avoidance among homeless people and access to care: an interview study among spiritual caregivers, street pastors, homeless outreach workers and formerly homeless people

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

Implementation of a threefold intervention to improve palliative care for persons experiencing homelessness: a process evaluation using the RE-AIM framework

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

What Goals Do Patients and Oncologists Have When Starting Medical Treatment for Metastatic Lung Cancer?

Background: Metastatic lung cancer is an incurable disease that can be treated with systemic therapy. These treatments might prolong survival and reduce symptoms, but they may also cause serious adverse effects. We studied the treatment goals of patients with metastasized lung cancer and their oncologists before starting systemic therapy, concordance between patients’ and oncologists’ goals, and feasibility of these goals. Patients and Methods: This research was conducted between November 2016 and April 2018 in 1 academic and 5 nonacademic hospitals across the Netherlands. A total of 266 patients with metastatic lung cancer and their prescribing oncologists (n = 23) filled out a questionnaire about their treatment goals and the estimated feasibility of these goals before treatment was started. Additional interviews were conducted with patients and oncologists. Results: Patients and oncologists reported quality of life (respectively, 45% and 72%), life prolongation (45% and 55%), decrease in tumor size (39% and 66%), and cure (19% and 2%) as treatment goals. The interviews showed that the latter appeared to be often as motivation to stay alive. Concordances between patients’ and oncologists’ treatment goals were low (ranging from 24% to 33%). Patients had slightly higher feasibility scores than oncologists (6.8 vs. 5.8 on a 10-point scale). Educational level, age, religious views, and performance status of patients were associated with treatment goals. Conclusion: Patients and oncologists set various goals for the treatment they receive/prescribe. Low concordance might exist because different goals are set or because the patient misunderstands something. Clear communication about treatment goals should be integrated into clinical care

Fabrication and characterization of ultra-thin, high concentration phosphorous donor layers on Ge substrates

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

Evaluating the perceived added value of a threefold intervention to improve palliative care for persons experiencing homelessness: A mixed-method study among social service and palliative care professionals

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

The Views of Homeless People and Health Care Professionals on Palliative Care and the Desirability of Setting Up a Consultation Service: A Focus Group Study

Context: Palliative care for homeless people is often given late, if at all. Professionals in both palliative care and shelter care are often insufficiently equipped to provide this complex care. Objectives: To provide insights into the palliative care experiences of professionals and homeless people, including barriers and facilitators to care, and to investigate whether a consultative function can help improve palliative care for homeless people. Methods: Six focus groups were included; four with professionals (n = 19) and two with severely ill homeless people (n = 15). Professionals were sampled purposively in organizations providing (palliative) care to the homeless. Homeless people were recruited by opportunity sampling. Results: Palliative care for homeless people is especially complex and differs substantially from regular palliative care. It differs greatly among professionals, institutions, and cities. Homeless people get less autonomy than they would like. Homeless people and professionals have different perceptions of the care provided. Trusting relationships between professionals and homeless people is essential and easily accessible, and flexible care is needed. Consultation, in particular involving exchange of expertise between professionals, can provide added value to professionals. Homeless people consider consultation primarily as an opportunity to train professionals to show more understanding, provide tailored palliative care, and enhance professional collaboration. The local situation, characteristics of a consultant, and role of a consultant in providing information and education must be considered when developing the consultation process. Conclusion: Consultation can play an important role in improving palliative care by linking disciplines, providing support to professionals and appropriate palliative care to homeless people