Facing Death: Familial Responses to Illness and Death: Volume 19

Purpose: This report analyzes relationships between chronic inflammation and quality of life (QoL). It assesses the potential role of intimate relationships in associations between inflammation, medical sequelae such as pain and disability, and QoL.

Design/Methodology/Approach: Limited longitudinal data from the National Social Life, Health, and Aging Project (NSHAP) were analyzed. Inflammation was assessed via the biomarker C-reactive protein (CRP). The authors examined pathwise associations between CRP levels and general happiness. The authors used ordinal logistic regression with companion OLS models, and conducted a variety of sensitivity analyses.

Findings: Intimate partnerships – especially marriage – appear to impact associations between inflammation and QoL. When QoL is measured using general happiness, intimate relationships appear to shape directional associations between inflammation and QoL along with medical consequences of inflammation.

Research Limitations/Implications: Inflammation and its clinical consequences may substantially alter intimate relationship involvement and quality that in turn impact QoL. These relationships should not be viewed as unilateral explanations of the tremendous variability observed in QoL among people with inflammatory conditions, but rather as possible elements of complex causal frameworks. Further investigation using advanced methods for longitudinal modeling from limited waves of data can help to shed additional light on the nuances of happiness and QoL among people living with chronic inflammation.

Originality/Value: This chapter provides an overview of possible causal relationships between chronic inflammation, associated clinical and social experiences, and QoL. Researchers interested in advanced causal modeling of relationships between chronic inflammation and QoL can build on this work using novel methods and data sources.

Purpose: The purpose of this study is to assess the effect of social isolation of minors with a parent or grandparent suffering from amyotrophic lateral sclerosis (ALS) and to determine whether the psychological support offered by an Italian no-profit association helped them to manage stress.

Methodology: This study followed a qualitative research design. The participants responded to in-depth interviews that were processed with inductive thematic analysis.

Findings: Five themes emerged: feedback on the psychological intervention; learning and changes after the intervention; discourses on illness and death in the family; experiences and difficulties during the lockdown and suggestions for other peers who might face the same situation.

Social Implications: Psychological support is necessary for these minors, and it helped them to manage both the stress of living with ALS and the limitations of social relationships during the pandemic. It showed the importance of authentic and honest communication about illness and death that allowed minors to manage anxiety and fear. Positive reinterpretation of these experiences by transforming them into opportunities was also revealed.

Originality: Studies on families with ALS patients are numerous, but studies on children of these patients are still rare, and no study has investigated the impact of the COVID-19 pandemic on these children. This research investigated a topic that has not been covered previously and it also provided the opportunity to know how these children, preadolescents and adolescents living in an already complex environment, have experienced lockdown and restrictions. The study also enriched the literature on this important issue.

Purpose: Death is a universal inevitability of life, though parents and adults often report difficulty or concerns about discussing the topic with children. This investigation reports on how parents of very young children (ages 3–6) have or would discuss death with their child, and what parents consider in navigating such discussions.

Methodology: In-depth interviews were conducted with parents (N = 24) of very young children (ages 3–6) to develop a grounded theory of parents actual and anticipated approaches to discussing death with children.

Findings: Parents generally described either seeking to protect children’s “innocence” by avoiding or limiting conversations of death, or, seeking to promote children’s socioemotional competence in confronting the complexities of death through more extensive discussions. We identified four factors we hypothesize may influence parents intended strategies for navigating these approaches: (1) parents’ past and current experiences related to death, (2) children’s exposure to deaths, (3) cultural and personal beliefs about death, and (4) parents’ knowledge and awareness of their child’s cognitive competences. While protection of children’s “innocence” and cultivation of children’s socioemotional competences are not opposing goals, these concepts appeared to be situated on a continuum.

Originality/Value: Given the prevalence of death in contemporary media, and an ongoing global pandemic, young children’s exposure to death will remain heightened for the foreseeable future. Family scholars and practitioners would be wise to prepare to assist families and children thoughtfully and compassionately. We further explore tools, resources, and strategies parents and professionals have found helpful in navigating these discussions.

Purpose: To explore how families respond to the death and dying of their loved ones in a hospital setting, archival research was conducted using eight qualitative articles describing next-of-kins’ perceptions of end-of-life care in Veterans Affairs Medical Centers (VAMCs). The articles were based on the qualitative arm of the VA Health Services Research and Development (HSR&D) study entitled, “Best Practices for End-of-life Care and Comfort Care Order Sets for our Nation’s Veterans” (BEACON).

Design: The archival research consisted of an interactive methodological process of data immersion, analysis, and interpretation which resulted in the emergence of two overarching thematic frameworks called “losing control” and “holding on.”

Findings: “Losing control” is the process that occurs when the patient experiences a cascading sequence of deleterious biological events and situations rendering the caregiver no longer able to direct the timing or setting of the dying trajectory. The notion of “holding on” captures family member’s responses to the need to maintain control after relinquishing the patient’s care to the institutional setting. During the patient’s hospitalization, the dual dynamics of “losing control” and “holding on” unfolded in the spatial, temporal, and life narrative domains.

Originality: The findings not only contribute to better overall understanding of family members’ responses to death in the pre-COVID-19 hospital setting but also heighten the awareness of the complex spatial, temporal, and narrative issues faced by family members who lost a hospitalized loved one during the COVID-19 pandemic.

Purpose: Miscarriage is commonly understood as an involuntary, grieve-able pregnancy outcome. Abortion is commonly understood as a voluntary, if stigmatized, pregnancy outcome that people do not typically grieve. This chapter examines a nexus of the involuntary and voluntary: how people who chose abortion following observation of a serious fetal health issue make sense of their experience and process associated emotions.

Design: The author draws on semi-structured interviews with cisgender women who had an observed serious fetal health issue and chose to terminate their pregnancy.

Findings: Findings highlight an initial prioritization of medical knowledge in pregnancy decision-making giving way, in the face of the inherent limits of medical knowability, to a focus on personal and familial values. Abortion represented a way to lessen the prospective suffering of their fetus, for many, and felt like an explicitly moral decision. Respondents felt relief after the abortion as well as a sense of loss. They processed their post-abortion emotions, including grief, in multiple ways, including through viewing – or intentionally not viewing – the remains, community rituals, private actions, and no formalized activity. Throughout respondents’ experiences, the stigmatization of abortion negatively affected their ability to obtain the care they desired and, for some, to emotionally process the overall experience.

Originality/Value: This chapter offers insight into the understudied experience of how people make sense of a serious fetal health issue and illustrates an additional facet of the stigmatization of abortion, namely how stigmatization may complicate people’s pregnancy decision-making process and their post-abortion processing.

Studies have identified low levels of social support as one of several risk factors for poor psychological outcome following bereavement. Despite this fact, little is known about how bereaved individuals interpret and define social support or which behaviors they perceive as helpful (Cacciatore, Thieleman, Fretts, & Jackson, 2021). The present study seeks to understand the experiences of the support received by Danish families who have lost a parent to death. Individuals recruited from a mutual bereavement support group (N = 87, 25–59 years old) responded to an online survey, which yielded both quantitative and qualitative data, the latter from open-ended questions and comment boxes. The results demonstrated a variety of sources of support. However, some of the bereaved individuals also reported a decided lack of help for both adults and children post-loss. As most respondents were women (93%), future research might shed more light on possible gender differences in the expectations, needs, and experiences of social support in bereavement. The study participants provided elaborate suggestions for the improvement of bereavement support, such as, practical help, access to bereavement support groups, more knowledge on bereavement and grief in the Danish society, and easier access to peer support. The chapter revealed an apparent lack of coordination of the support for parentally bereaved families. Additionally, some groups of bereaved children seemed to be particularly vulnerable and overlooked, namely the very young children, children in late adolescence/young adulthood, and children with special needs.

Purpose: The death of a child can elicit enduring and intense parental grief. Additionally, as parents are both confronted with the loss of their child, interpersonal processes come into play. This study aimed to examine the change in reported levels of grief among bereaved parents individually and at a couple-level. The authors examined the differences in grief trajectories between mothers and fathers and whether the reported level of grief of one partner predicts the other partner’s reported level of grief.

Design/methodology/approach: Our longitudinal study included 229 bereaved couples who completed the Inventory of Complicated Grief at 6, 13, and 20 months post-loss.

Findings: A latent growth curve analysis showed that parents reported consistently high average grief levels, mothers reported higher grief levels than fathers, and all parents reported a similar small decline in grief. A cross-lagged panel analysis showed that the grief of one parent affected the grief of the other parent with similar strength. Our results held regardless of the child’s gender and age, but an expected loss was associated with a lower grief level 6 months post-loss and a smaller decline in reported levels of grief.

Originality/value: These findings highlight bereaved parents as a particularly vulnerable population, increase our understanding of change in parental grief over time and of the interdependence of grieving in bereaved couples.

Purpose: The author seeks to identify how suicide-bereaved individuals conceptualize their relationships with deceased loved ones. The author engages Durkheim’s theory of suicide to provide a new framework to analyze this population.

Methodology: The author uses qualitative research and coding methods to produce a secondary analysis of previously collected interview transcripts.

Findings: The author concludes that participants experience the suicide of a loved one as a social event, conceptualizing it similarly to how Durkheim defined his four suicide types – characterized by too much or too little regulation and/or integration.

Research Limitations: As a result of the secondary analysis, a lack of demographic information remains the largest limitation, and the available demographic information indicates the participant population is not a diverse one. Therefore, the larger analysis is limited.

Practical and Social Implications: This work provides potential ways to improve current prevention and postvention practices for both the suicide-bereaved and those struggling with suicidality. Subsequently, it may help to improve the health outcomes of these groups.

Originality: To the author’s current knowledge, this is the first published use of Durkheim’s Suicide (1897/1966) as a framework to directly examine the suicide-bereaved population in this way. Thus, this work contributes to suicidology and sociology more broadly in two ways: by providing a new way to understand and ultimately help a vulnerable population and by providing a new use of a classic theory.