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.

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.

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.

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.

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.

Advance care planning in dementia: recommendations for healthcare professionals.

BACKGROUND: Advance care planning (ACP) is a continuous, dynamic process of reflection and dialogue between an individual, those close to them and their healthcare professionals, concerning the individual's preferences and values concerning future treatment and care, including end-of-life care. Despite universal recognition of the importance of ACP for people with dementia, who gradually lose their ability to make informed decisions themselves, ACP still only happens infrequently, and evidence-based recommendations on when and how to perform this complex process are lacking. We aimed to develop evidence-based clinical recommendations to guide professionals across settings in the practical application of ACP in dementia care. METHODS: Following the Belgian Centre for Evidence-Based Medicine's procedures, we 1) performed an extensive literature search to identify international guidelines, articles reporting heterogeneous study designs and grey literature, 2) developed recommendations based on the available evidence and expert opinion of the author group, and 3) performed a validation process using written feedback from experts, a survey for end users (healthcare professionals across settings), and two peer-review groups (with geriatricians and general practitioners). RESULTS: Based on 67 publications and validation from ten experts, 51 end users and two peer-review groups (24 participants) we developed 32 recommendations covering eight domains: initiation of ACP, evaluation of mental capacity, holding ACP conversations, the role and importance of those close to the person with dementia, ACP with people who find it difficult or impossible to communicate verbally, documentation of wishes and preferences, including information transfer, end-of-life decision-making, and preconditions for optimal implementation of ACP. Almost all recommendations received a grading representing low to very low-quality evidence. CONCLUSION: No high-quality guidelines are available for ACP in dementia care. By combining evidence with expert and user opinions, we have defined a unique set of recommendations for ACP in people living with dementia. These recommendations form a valuable tool for educating healthcare professionals on how to perform ACP across settings.

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.

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.

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.

Psychometric properties of the Dutch Inventories of Prolonged Grief for Children and Adolescents.

UNLABELLED: A significant minority of bereaved adults develops prolonged grief disorder (PGD), a syndrome encompassing debilitating symptoms of grief distinct from depression and anxiety. Few studies have examined the phenomenology and correlates of PGD among children and adolescents. In part, this is due to the lack of a psychometrically sound questionnaire to assess PGD symptoms in these groups. Based on an adult measure of PGD, we developed two questionnaires of PGD symptoms for children and adolescents named the Inventory of Prolonged Grief for Children (IPG-C) and Inventory of Prolonged Grief for Adolescents (IPG-A), respectively. Psychometric properties of these measures were examined in three samples, including mostly parentally bereaved children (aged 8-12 years, total sample n = 169) and adolescents (aged 13-18 years, total sample n = 153). First, findings showed that items of the IPG-C and IPG-A represented one underlying dimension. Second, the internal consistency and temporal stability of both questionnaires were adequate. Third, findings supported the concurrent validity (e.g., significant correlations with measures of depression and post-traumatic stress-disorder [PTSD]), convergent and divergent validity (stronger correlations with similar questionnaires of 'traumatic grief' than with two dissimilar questionnaires of 'ongoing presence' and 'positive memories') and incremental validity (significant correlations with an index of functional impairment, even when controlling for concomitant depression and PTSD) of the IPG-C and IPG-A. This report provides further evidence of the clinical significance of PGD symptoms among children and adolescents and promising psychometric properties of questionnaires that can be used to assess these symptoms. KEY PRACTITIONER MESSAGE: The Inventory of Prolonged Grief for Children (IPG-C) and Inventory of Prolonged Grief for Adolescents (IPG-A) were developed to be able to assess symptoms of Prolonged Grief Disorder (PGD) among children and adolescents. In different samples, the internal consistency, temporal stability, and concurrent and construct validity of these questionnaires were found to be adequate. The IPG-C and the IPG-A can be used in research examining causes and consequences of PGD, and the effectiveness of bereavement interventions for children and adolescents. This study provides further evidence of the existence and clinical significance of PGD symptoms among children and adolescents and supports the inclusion of a new category for bereavement-related disorders in DSM-5.

Confirming the distinctiveness of complicated grief from depression and anxiety among adolescents.

Studies in adult populations have shown that symptoms of complicated grief (CG) constitute a form of bereavement-related distress distinct from symptoms of depression and anxiety. The purpose of this article is to replicate these findings in two samples of bereaved adolescents by investigating the latent structure of symptoms of CG, anxiety, and depression measured by self-report questionnaires. The first study (N = 245) focuses on one of the most prevalent losses in adolescence, namely the death of a grandparent. In the second study (N = 351) the authors further the examination of the distinctiveness question by inspecting not only the latent structure of CG, depression, and anxiety but also whether the distinctiveness of the emerging latent structure holds across subgroups of bereaved adolescents suffering different types of losses. Confirmatory factor analyses in both studies confirm the distinctiveness of CG from depression and anxiety in a younger population.

Are normal and complicated grief different constructs? a confirmatory factor analytic test.

Nowadays, much debate in the bereavement domain is directed towards the inclusion of Complicated Grief (CG) as a separate category in the Diagnostic and Statistical Manual of Mental Disorders. Important within this discussion is the conceptual relationship between CG reactions and normal grief (NG) reactions. This study aims at elucidating this relationship by using data from 456 bereaved young adults, aged 17 to 25 years. We examined the structural distinctiveness of CG and NG reactions, using two criteria sets. The first set ties in with previous research in bereaved adults on the distinctiveness of CG and NG and allows to test the replicability of earlier findings. The second set links up with the recently revised criteria for CG and permits to investigate whether earlier findings hold for the new criteria. For both sets, two models for NG and CG were compared using confirmatory factor analytic procedures. These analyses revealed that CG and NG reactions can be distinguished by their very nature, except for one CG reaction (viz. 'yearning'), that loaded on both factors.