How strong is the will-to-live in frail older persons? A survey study in acute geriatric wards and nursing homes in Belgium.

INTRODUCTION: Will-to-live is defined as the psychological expression of one's commitment to life and the desire to continue living. It is an important indicator of subjective wellbeing. This study aimed to assess the will-to-live in frail older hospitalized patients and nursing home residents as well as to evaluate its association with physical frailty, tiredness of life, depression and wish-to-die. METHODS: Between March and September 2021, we interviewed 186 older adults in six nursing homes and two acute geriatric wards across Belgium. Will-to-live was assessed using a single-item numeric rating scale from 0 to 5. A linear regression analysis was performed to assess the association between will-to-live and frailty (Clinical Frailty Scale) with adjustment for age, gender and setting. Mann-Whitney U test was used to evaluate the association between will-to-live and depression, tiredness of life and wish-to-die. RESULTS: Mean age was 85 (± 6.2) years. Mean score on the Clinical Frailty Scale was five (± 1.5) and four on the will-to-live (± 1.3). No statistical significant association was found between will-to-live and age (p = 0.991), gender (p = 0.272), setting (p = 0.627) and frailty (p = 0.629). Multiple linear regression showed no significant association with Clinical Frailty Scale (p = 0.660), after adjustment for age, gender and setting. Will-to-live was negatively associated with tiredness of life (p = 0.020) and wish-to-die (p < 0.001), but not with depression (p = 0.186). DISCUSSION: Both nursing home residents and older hospitalized patients expressed a strong or very strong will-to-live. Will-to-live was not associated with physical frailty as measured by the Clinical Frailty Scale. Nursing home residents with a weak will-to-live were more likely to have depressive symptoms. Most nursing home residents with a wish-to-die had also a low will-to-live, although some residents had both a high will-to-live and wish-to-die.

Relatives' needs in terms of bereavement care throughout euthanasia processes: A qualitative study.

AIM: To explore relatives' needs in terms of bereavement care during euthanasia processes, how healthcare providers respond to these needs, and the degree of commonality between relatives' and healthcare providers' reports. DESIGN: A phenomenological design was employed, utilising reflexive thematic analysis to examine interviews conducted with relatives (N = 19) and healthcare providers (N = 47). RESULTS: Relatives' needs throughout euthanasia processes are presented in five main themes and several subthemes, with similar findings between both sets of participants. Although relatives infrequently communicated their needs explicitly to healthcare providers, they appreciated it when staff proactively met their needs. Healthcare providers aimed to assist with the relatives' grief process by tending to their specific needs. However, aftercare was not consistently offered, but relatives did not have high expectations for professional follow-up care. CONCLUSION: Our research offers important directions for healthcare professionals, empowering them to provide needs-based bereavement care during euthanasia processes. Moreover, it emphasises the importance of recognising the unique needs of relatives and proactively addressing them in the period before the loss to positively contribute to relatives' grief process. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Insights into relatives' needs in the context of euthanasia. Good practices on how healthcare providers can attend to relatives' needs before, during and after the loss IMPACT: Current literature and guidelines on needs-based bereavement care in the context of euthanasia and, more generally, assisted dying, are limited. These findings provide concrete directions for practice in supporting (nearly) bereaved relatives in the context of euthanasia, potentially mitigating adverse health outcomes. REPORTING METHOD: Standards for Reporting Qualitative Research (SRQR checklist). PATIENT OR PUBLIC CONTRIBUTION: Relatives of deceased cancer patients were involved in the conduct of the study.

Relatives' Experiences of Being Involved in Assisted Dying: A Qualitative Study.

Recent literature demonstrates an interdependence between relatives and healthcare providers throughout euthanasia processes. Yet, current guidelines and literature scarcely specify the interactions between healthcare providers and bereaved relatives. The aim of this work consisted of providing an insight into bereaved relatives' experiences (1) of being involved in euthanasia processes and (2) of their interactions with healthcare providers before, during, and after the euthanasia. The research process was guided by the principles of constructivist grounded theory. Nineteen Dutch-speaking bereaved relatives of oncological patients, who received euthanasia at home or in a hospital less than 24 months ago, participated via semi-structured interviews. These interviews were conducted between May 2021 and June 2022. Due to the intensity of euthanasia processes, relatives wanted to be involved as early as possible, in order to receive time, space, and access to professionals' support whilst preparing themselves for the upcoming loss of a family member with cancer. Being at peace with the euthanasia request facilitated taking a supportive attitude, subsequently aiding in achieving a serene atmosphere. A serene atmosphere facilitated relatives' grief process because it helped them in creating and preserving good memories. Relatives appreciated support from healthcare providers, as long as overinvolvement on their part was not occurring. This study advocates for a relational approach in the context of euthanasia and provides useful complements to the existing euthanasia guidelines.

Flemish healthcare providers' attitude towards tiredness of life and euthanasia: a survey study.

OBJECTIVES: To explore the legal understanding and attitudes of nurses and physicians in both acute and chronic geriatric care (Flanders, Belgium) regarding euthanasia in the context of tiredness of life in older people. METHOD: Healthcare providers employed in acute care (59 geriatricians and 75 nurses of acute geriatric wards), as well as chronic care (135 general practitioners (GPs) and 76 nurses employed in nursing homes and home care services) were sent a survey with four case vignettes. For each case vignette, respondents were asked the following questions: (1) 'Does this case fit the due-care criteria of the euthanasia law?', (2) 'Do you consider this person to be tired of life?', (3) 'Can you comprehend this person's euthanasia request?'. RESULTS: In cases of severe and life-limiting physical suffering, where the patient meets the legal criteria for euthanasia in Belgium, only 50% of physicians and nurses are aware of this legal basis. In case of tiredness of life without underlying pathology, nurses showed more comprehension for the euthanasia request compared to physicians (43.0% vs. 10.8%, p < 0.001). Physicians tend to assess the legal base of an euthanasia-request depending on the severity of physical morbidity, whereas nurses show a greater comprehension towards euthanasia-requests even in absence of severe illness. Geriatricians are more reserved regarding performing euthanasia themselves as compared to GPs, regardless of underlying pathology or reason for the euthanasia-request (p < 0.001). CONCLUSION: The legal understanding and attitude of Flemish physicians and nurses towards tiredness of life and euthanasia in older patients differed to a great extent. This study showed (1) a lack of awareness of the legal basis for euthanasia in the context of ToL among all HCPs, (2) differences in the extent of comprehension between nurses and physicians and (3) differences in willingness to actually perform euthanasia between geriatricians and GPs. So even with the formulation of strict due-care criteria there is still room for interpretation. This creates a gray area and a discussion point between healthcare providers.

Medical assistance in dying and older persons in Belgium: trends, emerging issues and challenges.

In 2002, the Belgian Act on euthanasia came into effect, regulating the intentional ending of life by a physician at the patient's explicit request. Subsequently, the number of reported euthanasia deaths increased every year. Specifically, the proportion of euthanasia deaths in older persons has risen significantly in the last few years. Since the conception of the Euthanasia Act, Belgian physicians have been confronted with challenges concerning euthanasia requests in older persons with polypathology, tiredness of life or dementia. By exploring these issues, this commentary highlights the importance of a meticulous and team-based assessment of the (i) seriousness of the underlying condition, (ii) voluntariness of the request and (iii) decisional capacity of the older person requesting euthanasia.

No difference in effects of 'PACE steps to success' palliative care program for nursing home residents with and without dementia: a pre-planned subgroup analysis of the seven-country PACE trial.

BACKGROUND: 'PACE Steps to Success' is a multicomponent training program aiming to integrate generalist and non-disease-specific palliative care in nursing homes. This program did not improve residents' comfort in the last week of life, but it appeared to improve quality of care and dying in their last month of life. Because this program included only three dementia-specific elements, its effects might differ depending on the presence or stage of dementia. We aimed to investigate whether the program effects differ between residents with advanced, non-advanced, and no dementia. METHODS: Pre-planned subgroup analysis of the PACE cluster-randomized controlled trial in 78 nursing homes in seven European countries. Participants included residents who died in the previous 4 months. The nursing home staff or general practitioner assessed the presence of dementia; severity was determined using two highly-discriminatory staff-reported instruments. Using after-death questionnaires, staff assessed comfort in the last week of life (Comfort Assessment in Dying-End-of-Life in Dementia-scale; primary outcome) and quality of care and dying in the last month of life (Quality of Dying in Long-Term Care scale; secondary outcome). RESULTS: At baseline, we included 177 residents with advanced dementia, 126 with non-advanced dementia and 156 without dementia. Post-intervention, respectively in the control and the intervention group, we included 136 and 104 residents with advanced dementia, 167 and 110 with non-advanced dementia and 157 and 137 without dementia. We found no subgroup differences on comfort in the last week of life, comparing advanced versus without dementia (baseline-adjusted mean sub-group difference 2.1; p-value = 0.177), non-advanced versus without dementia (2.7; p = 0.092), and advanced versus non-advanced dementia (- 0.6; p = 0.698); or on quality of care and dying in the last month of life, comparing advanced and without dementia (- 0.6; p = 0.741), non-advanced and without dementia (- 1.5; p = 0.428), and advanced and non-advanced dementia (0.9; p = 0.632). CONCLUSIONS: The lack of subgroup difference suggests that while the program did not improve comfort in dying residents with or without dementia, it appeared to equally improve quality of care and dying in the last month of life for residents with dementia (regardless of the stage) and those without dementia. A generalist and non-disease-specific palliative care program, such as PACE Steps to Success, is a useful starting point for future palliative care improvement in nursing homes, but to effectively improve residents' comfort, this program needs further development. TRIAL REGISTRATION: ISRCTN, ISRCTN14741671 . Registered 8 July 2015 - Retrospectively registered.

Value discrepancies between nurses and patients: A survey study.

BACKGROUND: Patient-centeredness, respect for patient autonomy, and shared decision-making have now made it to center stage in discussions on quality of care. Knowing what actually counts in care and how it should be accomplished from the patients' and nurses' perspective seems crucial. AIM: To explore how patients and their nurses perceive the importance and enactment of values in their healthcare. RESEARCH DESIGN: An observational, cross-sectional study using a self-developed questionnaire, consisting of 15 items related to seven values (e.g. uniqueness, autonomy, professionalism, compassion, responsiveness, partnership, and empowerment) as described in the taxonomy of Bastemeijer et al. PARTICIPANTS AND RESEARCH CONTEXT: The survey was completed by 384 patients and 81 nurses. Participants were recruited on eight internal medicine wards of a 1000-bed university hospital in Belgium. ETHICAL CONSIDERATIONS: This study was approved by the ethical committee of the Ghent University Hospital (B670201836799). FINDINGS: (1) Patients and nurses prioritize values of care differently; (2) nurses report not being able to enact the values they prioritize in actual practice as much as one would like to; and (3) there is a gap in experienced delivery of a comprehensible explanation of all treatment options, a conversation based on equality, making shared decisions, and being non-judgmental between nurses and patients. DISCUSSION: Our findings challenge nurses' overemphasis on professional compassion and uniqueness while arguing for increased attention on authentic shared decision-making and empowerment. The first step to a patient-centered culture truly involving patients in their healthcare is communication and information provision, rather than focusing on tangible and normative constructs. CONCLUSION: Our findings revealed differences in prioritization and actual enactment of values in care between patients and nurses. This was especially so for values related to communication, provision of complete unbiased information, and shared decision-making. Nurses should prioritize providing comprehensible information and using conversations based on equality to make decision together with patients.

Grief and loss in older people residing in nursing homes: (un)detected by nurses and care-assistants?

AIM: The aim of this study was to explore how nurses and care-assistants (nursing staff) working in six Flemish nursing homes experience and describe their involvement in grief care. BACKGROUND: Although grief in older people is widely described in literature, less is known about how nursing staff in nursing homes offer and perceive grief care. DESIGN: A qualitative research design with elements of constructivist grounded theory was used. METHODS: Loosely structured face-to-face interviews were done with fourteen nurses and care-assistants. Data were collected from October 2013-March 2014. Interview transcripts were analysed using the Qualitative Analysis Guide of Leuven (QUAGOL) method with support of NVivo 10. FINDINGS: Grief care in nursing homes is characterized by a complex tension between two care dimensions: (1) being involved while keeping an appropriate distance; and (2) being while doing. Nursing staff described key enablers and influencing factors for grief care at the level of both the individual and the organizational context. CONCLUSION: Findings suggest an established personal sensitivity for grief care considered from the nursing staff points of view. Nevertheless, a common denominator was the necessity to further develop a supportive and multidisciplinary grief care policy ingrained in the existing care culture. Suggested components of this grief care policy are: (a) centring attention on non-death-related loss and the cumulative nature of loss in residents; (b) building capacity by means of reflective practices; and (c) the importance of self-care strategies for nursing staff. Furthermore, the findings from this study point towards a need for education and training.

The suffering in silence of older parents whose child died of cancer: A qualitative study.

As life expectancy grows, the death of an adult child becomes a highly prevalent problem for older adults. The present study is based on nine interviews and explores the experience of parents (≥70 years) outliving an adult child. The bereaved parents described some silencing processes constraining their expression of grief. When an adult dies, the social support system nearly automatically directs its care towards the bereaved nuclear family. Parental grief at old age is therefore often not recognized and/or acknowledged. Health care providers should be sensitive to the silent grief of older parents both in geriatric and oncology care settings.

Aged parents' experiences during a critical illness trajectory and after the death of an adult child: a review of the literature.

BACKGROUND: Given the growing life expectancy, the likelihood increases that health-care providers are confronted with older people having an adult child with a life-limiting disease. AIM: This literature review aimed to (1) explore the experiences of aged parents with regard to their position and role as a parent of an adult child with a life-limiting illness, (2) detect gaps in the existing literature and (3) make recommendations for future research. DESIGN: A literature search of English articles, including both quantitative and qualitative designs. DATA SOURCES: Four electronic databases and the reference lists of included studies. RESULTS: In total, 19 studies (7 quantitative and 12 qualitative) were included. Few studies describe the experiences of older people whose adult child has cancer or has died of cancer. Existing studies are merely descriptive and give no concrete recommendations for health-care providers in daily practice. The studies suggest that aged parents carry deep burdens from the prospect of losing their adult child. Aged parents want to stay involved but need to reconfigure their parent role. As soon as the cancer diagnosis is disclosed, parents are confronted with a re-awakening of parental nurturing, which clashes with the autonomy of the adult child. Even after the adult child is deceased, older parents retain the image of themselves as parents. CONCLUSIONS: There is a need for more in-depth research to understand the lived experience of these parents and what health-care providers can do to assist them.

Bereavement care and the interaction with relatives in the context of euthanasia: A qualitative study with healthcare providers.

BACKGROUND: A recent review shows an interdependence between healthcare providers and relatives in the context of euthanasia. Belgian guidelines do focus on the role of certain healthcare providers (physicians, nurses, and psychologists), yet they hardly specify bereavement care services before, during and after the euthanasia. PURPOSE: A conceptual model showing underlying mechanisms of healthcare providers' experiences regarding the interaction with and the provision of bereavement care to relatives of cancer patients throughout a euthanasia process. METHODS: 47 semi-structured interviews with Flemish physicians, nurses and psychologists working in hospitals and/or homecare, conducted from September 2020 to April 2022. Transcripts were analyzed using the Constructivist Grounded Theory Approach. RESULTS: Participants experienced the interaction with relatives as very diverse, which can be visualized as a continuum ranging from negative to positive, depending on each unique case. The achieved degree of serenity was the main contributor in determining their position on the aforementioned continuum. To create this serene atmosphere, healthcare providers undertook actions underpinned by two attitudes (wariness and meticulousness), which are guided by different considerations. These considerations can be categorized into three groups: 1) ideas about a good death and its importance, 2) having the situation well under control and 3) self-reassurance. CONCLUSIONS: If relatives were not at peace, most participants said that they deny a request or formulate additional requirements. Moreover, they wanted to ensure relatives can cope with the loss, which was often experienced as intense and time-consuming. Our insights shape needs-based care from healthcare providers' perspective in the context of euthanasia. Future research should explore the relatives' perspective regarding this interaction and the provision of bereavement care. TWEETABLE ABSTRACT: Professionals strive for a serene atmosphere throughout a euthanasia process to ensure relatives can cope with the loss, and the way in which the patient died.

Family participation in the care of older hospitalised patients: Patients', family caregivers' and nurses' preferences on family caregivers performing care tasks.

BACKGROUND: It is estimated that there are 101 million older care-dependent people (60+). This group is expected to double by 2050 due to the ageing of the world's population and the rise in life expectancy. Although people tend to live longer, there is little evidence that they live their later years in better health. In the future, this might put even more stress on an already overburdened acute care health system. Hospitals therefore need to focus on preventive measures to avoid rehospitalisation of older people. Family participation could be part of the solution. OBJECTIVES: This study aimed to gain insight into the preferences of family caregivers, patients and nurses towards family caregivers taking up care tasks during hospitalisation, after receiving education. METHODS: Data were collected using a cross-sectional survey of nursing staff, family caregivers and older patients in nine wards for older people within three hospitals. Data collection ran from October 2019 till March 2020 using a questionnaire of 25 care tasks with three answer options (perform alone, together with a nurse, do not perform). A consecutive sample of 330 patients and 133 family caregivers (81 dyads could be formed) next to a convenience sample of 67 nurses was obtained. RESULTS: Patients (65%) are more prepared to let their family caregiver perform tasks alone than family caregivers (59%) and nurses (52%). Only few patients (3.8%) and family caregivers (13%) prefer the family caregiver to perform a task together with a nurse. The latter answer thus rather dichotomously, while nurses answer more dynamically over the three answer options. Of all family caregivers, 50% indicate willingness and ability to perform tasks on a regular basis. Significant correlations indicate that patients, family caregivers and nurses agree on which care tasks would be more preferable to be performed by a family caregiver. Looking at the dyads, preferences of a patient are not suspected to be more similar with his family caregiver than with a random family caregiver. CONCLUSIONS: Patients, FCGs and nurses indicate to be prepared to engage in family participation. Further research needs to concentrate on the different attitudes and perceptions towards performing care tasks through qualitative research and how a successful implementation can be set up. IMPLICATIONS FOR PRACTICE: Our study indicates that implementation of family participation in physical care within the hospital could be viable. TRIAL REGISTRATION: The study protocol was approved by the ethical committee of the Ghent University Hospital (B670201940430).

In-Hospital Bereavement Services as an Act of Care and a Challenge: An Integrative Review.

CONTEXT: Globally, people most often die within hospitals. As such, healthcare providers in hospitals are frequently confronted with dying persons and their bereaved relatives. OBJECTIVES: To provide an overview of the current role hospitals take in providing bereavement care. Furthermore, we want to present an operational definition of bereavement care, the way it is currently implemented, relatives' satisfaction of receiving these services, and finally barriers and facilitators regarding the provision of bereavement care. METHODS: An integrative review was conducted by searching four electronic databases, from January 2011 to December 2020, resulting in 47 studies. Different study designs were included and results were reported in accordance with the theoretical framework of Whittemore and Knafl (2005). RESULTS: Only four articles defined bereavement care: two as services offered solely post loss and the other two as services offered pre and post loss. Although different bereavement services were delivered the time surrounding the death, the follow-up of bereaved relatives was less routinely offered. Relatives appreciated all bereavement services, which were rather informally and ad-hoc provided to them. Healthcare providers perceived bereavement care as important, but the provision was challenged by numerous factors (such as insufficient education and time). CONCLUSION: Current in-hospital bereavement care can be seen as an act of care that is provided ad-hoc, resulting from the good-will of individual staff members. A tiered or stepped approach based on needs is preferred, as it allocates funds towards individuals-at-risk. Effective partnerships between hospitals and the community can be a useful, sustainable and cost-effective strategy.

Advance care planning in nursing homes: new conversation and documentation tools.

Although advance care planning (ACP) is highly relevant for nursing home residents, its uptake in nursing homes is low. To meet the need for context-specific ACP tools to support nursing home staff in conducting ACP conversations, we developed the ACP+intervention. At its core, we designed three ACP tools to aid care staff in discussing and documenting nursing home resident's wishes and preferences for future treatment and care: (1) an extensive ACP conversation guide, (2) a one-page conversation tool and (3) an ACP document to record outcomes of conversations. These nursing home-specific ACP tools aim to avoid a purely document-driven or 'tick-box' approach to the ACP process and to involve residents, including those living with dementia according to their capacity, their families and healthcare professionals.

Tiredness of Life in Older persons: A Qualitative Study on Nurses' Experiences of Being Confronted With This Growing Phenomenon.

BACKGROUND AND OBJECTIVES: With worldwide aging it is imperative to understand nurses' perceptions of tiredness of life (ToL) and their ways of dealing with an increasingly common phenomenon. Most research on ToL relates to older individuals' experiences. This study aimed to gain insight into nurses' (a) perceptions of, (b) attitude(s) toward, and (c) ways of dealing with ToL in older patients. RESEARCH DESIGN AND METHODS: Qualitative study with elements of constructivist grounded theory. Data were collected by means of semi-structured interviews between February 2016 and June 2017 with a purposive sample of 25 nurses working in home care and nursing homes. RESULTS: A careful consideration indicative of an oscillation between 3 levels (e.g., behavioral, cognitive, and affective) is present. The confrontation with persons having ToL instigates a cognitive process of searching to understand the state a person is in, which on its turn ensues in an emotional balancing between courage and powerlessness and a behavioral approach of action or dialogue. DISCUSSION AND IMPLICATIONS: Our findings indicate that nurses aim to provide good care, sensitive to the older person's needs, but this process is not without ambiguity. This study provides nurse managers with valuable guidance to (a) support nursing staff in dealing with ToL, and (b) advance opportunities for emotionally sensitive care and (individual- and team-based) reflection. Finally, this study offers suggestions for education programs to incorporate ToL in curricula.

Patients' experiences of transitioning between different renal replacement therapy modalities: A qualitative study.

BACKGROUND: Different kidney replacement therapy modalities are available to manage end-stage kidney disease, such as home-based dialysis, in-center hemodialysis, and kidney transplantation. Although transitioning between modalities is common, data on how patients experience these transitions are scarce. This study explores patients' perspectives of transitioning from a home-based to an in-center modality. METHODS: Patients transitioning from peritoneal dialysis to in-center hemodialysis were purposively selected. Semi-structured interviews were performed, digitally recorded, and transcribed verbatim. Data analysis, consistent with Charmaz' constructivist approach of grounded theory was performed. RESULTS: Fifteen patients (10 males; mean age 62 years) participated. The conditions of the transitioning process impacted the participants' experiences, resulting in divergent experiences and associated emotions. Some participants experienced a loss of control due to the therapy-related changes. Some felt tied down and having lost independence, whereas others stated they regained control as they felt relieved from responsibility. This paradox of control was related to the patient having or not having (1) experienced a fit of hemodialysis with their personal lifestyle, (2) a frame of reference, (3) higher care requirements, (4) insight into the underlying reasons for transitioning, and (5) trust in the healthcare providers. CONCLUSIONS: Care teams need to offer opportunities to elicit patients' knowledge and fears, dispel myths, forge connections with other patients, and visit the dialysis unit before transition to alleviate anxiety. Interventions that facilitate a sense of control should be grounded in the meaning that the disorder has for the person and how it impacts their sense of self.

Cancer patients' experiences of communicating and dealing with their older parents: A qualitative study.

PURPOSE: In 2017 almost 25,000 Belgians between 40 and 60 years (38% of new diagnoses) were diagnosed with cancer. With increasing life expectancy the chance augments that these patients still have older parents alive. This implies that oncology care should also take into account the impact cancer may have on (the relationship with) older parents. The purpose of this study was to explore how cancer patients communicate and deal with their older parents during the illness trajectory. METHOD: Semi-structured interviews were conducted with 11 cancer patients. Interview transcripts were analysed using the principles of the constructivist Grounded Theory Approach. RESULTS: Depending on the situation, the time frame and the person the patients are talking about, cancer patients oscillate between perspectives (I, They and We). A common denominator in all three perspectives is silence fuelled by different forms of solicitude (self-protection and other-protection). This solicitude underpins the cancer patients' communicative behaviours and ways of relating towards their parents. CONCLUSIONS: Present findings underline the importance of health care providers considering the often hidden complexity of giving information and talking about feelings. Nurses' strategies must be designed not to harm the existing mechanism of solicitude and the diligent management of the patients' relationship with their parents. Conversations about functionality of avoiding certain topics and the impetus behind certain communicative patterns should be put forward instead of consensually advising open communication.

Implementing advance care planning in routine nursing home care: The development of the theory-based ACP+ program.

BACKGROUND: While various initiatives have been taken to improve advance care planning in nursing homes, it is difficult to find enough details about interventions to allow comparison, replication and translation into practice. OBJECTIVES: We report on the development and description of the ACP+ program, a multi-component theory-based program that aims to implement advance care planning into routine nursing home care. We aimed to 1) specify how intervention components can be delivered; 2) evaluate the feasibility and acceptability of the program; 3) describe the final program in a standardized manner. DESIGN: To develop and model the intervention, we applied multiple study methods including a literature review, expert discussions and individual and group interviews with nursing home staff and management. We recruited participants through convenience sampling. SETTING AND PARTICIPANTS: Management and staff (n = 17) from five nursing homes in Flanders (Belgium), a multidisciplinary expert group and a palliative care nurse-trainer. METHODS: The work was carried out by means of 1) operationalization of key intervention components-identified as part of a previously developed theory on how advance care planning is expected to lead to its desired outcomes in nursing homes-into specific activities and materials, through expert discussions and review of existing advance care planning programs; 2) evaluation of feasibility and acceptability of the program through interviews with nursing home management and staff and expert revisions; and 3) standardized description of the final program according to the TIDieR checklist. During step 2, we used thematic analysis. RESULTS: The original program with nine key components was expanded to include ten intervention components, 22 activities and 17 materials to support delivery into routine nursing home care. The final ACP+ program includes ongoing training and coaching, management engagement, different roles and responsibilities in organizing advance care planning, conversations, documentation and information transfer, integration of advance care planning into multidisciplinary meetings, auditing, and tailoring to the specific setting. These components are to be implemented stepwise throughout an intervention period. The program involves the entire nursing home workforce. The support of an external trainer decreases as nursing home staff become more autonomous in organizing advance care planning. CONCLUSIONS: The multicomponent ACP+ program involves residents, family, and the different groups of people working in the nursing home. It is deemed feasible and acceptable by nursing home staff and management. The findings presented in this paper, alongside results of the subsequent randomized controlled cluster trial, can facilitate comparison, replicability and translation of the intervention into practice.

Tightrope walkers suffering in silence: A qualitative study into the experiences of older parents who have an adult child with cancer.

BACKGROUND: Given the worldwide ageing of the population and the changes in the structure of society and family, the likelihood increases that older parents face a serious illness in an adult child and will even outlive their child. OBJECTIVES: To gain insight into older parents' experiences, concerns, and dilemmas regarding their position and role as a parent of an adult child with cancer. DESIGN: Qualitative interview design. SETTING: A geriatric ward and four oncology wards of a university hospital, several nursing homes, local health service agencies. PARTICIPANTS: Twenty-five parents (age range 65-91 years) of 22 adult children with cancer (age range 33-66 years) of differing stages and types (with a preponderance of breast cancer). METHODS: Using a qualitative research methodology underpinned by grounded theory, we conducted semi-structured interviews with a fairly open framework. RESULTS: Suffering in silence emerged as the core category encapsulating three interrelated balancing acts: (1) shielding their child while being shielded by their child, (2) being involved while keeping an adequate distance, and (3) shifting attentional priorities between their child, themselves, and others. The emotional interconnectedness between older parents and their adult child with cancer becomes tangible in the transformational process of their parental role and position described in the three balancing acts. CONCLUSIONS: Faced with their child's illness and possible death, older parents experience overwhelming feelings often underestimated by their (close) environment. Nurses need to be susceptible for the needs and experiences of these older parents. For care by nurses to make a difference, their attention must be directed to how older parents can be invigorated in their parenthood while respecting the child's autonomy.