No / The clinical and social epidemiology of living with a life-threatening or life-limiting illness, frail ageing, long-term caregiving, and grief and bereavement is well documented in the palliative care, psycho-oncology and psychiatric literature but this investigation asks what interest exists from the mainstream public health sector in these health and illness experiences. This paper reports a content analysis of 7 key British public health journals, 14 major public health textbooks and 3 public health websites employing key word and synonym searches to assess the size and quality of interest in populations related to ageing, dying, caregiving, and grief and bereavement. Compared with other public health issues, such as obesity and tobacco use, for examples, interest in the social experience and epidemiology of end-of-life experiences is extremely low. Reasons for this lack of interest are explored.

Qu’est-ce qu’une décision ? Comment se construit-elle dans la vraie vie ? La vision d’une décision située entre délibération et action correspond-elle à une réalité ? Est-elle l’acte qui crée une rupture dans le cours des évènements ?Pour explorer ces questions et secouer les cadres de la décision, ce travail s’est appuyé sur l’expérience humaine davantage que sur des analysesthéoriques. C’est à la lumière de la narration de parents ayant perdu leurnouveau-né en réanimation, trois ans auparavant suite à une décision depoursuivre ou non des traitements, que nous proposons de revoir la notion dedécision.Le regard et le discours rétrospectifs des parents entendus lors d’un entretiende recherche dévoilent tout un univers et les circonstances dramatiques dans les quelles ils ont été amenés à se déterminer. C’est pris dans des émotions très fortes envers leur nouveau-né et dépendants des attitudes des soignants qu’ils se sont approchés de leur enfant et qu’ils se sont décidés ; nous constatons les ressources qu’ils ont puisées à l’intérieur d’eux-mêmes pourrépondre à ces demandes des soignants. Dans ce contexte les actes delangage sont évoqués : par le seul fait de le dire, les parents réussissent à sedécider mais non à décider des actions des médecins.Les parents évoquent aussi leur présent, en tant qu’avenir d’un passé certes révolu mais qui se prolonge par la mémoire. Au présent, ils inscrivent leur narration dans la traversée du deuil et attribuent à l’enfant perdu et à peine connu, une puissance d’âme qui dépasse largement ce qui peut être imaginé.Les sentiments de responsabilité et de culpabilité qu’ils éprouvent face à eux mêmes et face au petit mort donnent du sens au passé et participent a posteriori à une inscription de soi en tant qu’un des acteurs dans cette histoire.La délibération semble possible après la mort de l’enfant ; elle vient après coup insérer une forme de liberté humaine et de raison dans cette histoire.Revenant dans l’univers des soignants, ce travail se termine par une réflexion sur les conditions nécessaires pour qu’une telle décision soit acceptable à10long terme pour des parents : c’est un choix non pas idéal mais raisonnable et suffisamment bon pour l’enfant, une décision partagée sous la forme d’une discussion, qui se construit dans le récit de leur vie. La possibilité de créer soi même quelque chose de personnel avec son enfant illumine cette histoire.La question que nous traitons est éthique en elle-même car elle participe à un questionnement philosophique de l’action. Elle est d’ordre éthique et philosophique, mais aussi pratique. Les parents vivent cette histoire sous le regard des soignants qui révèlent dans l’interaction la considération qu’ils ont pour eux et la prise en compte de leur vulnérabilité. Le discours des parents,ici accompagné d’une réflexion rationnelle, pourrait favoriser l’émergence chez les soignants d’émotions empathiques et du sentiment d’appartenir à une humanité commune. Sous cette forme, il peut aussi constituer un moyen didactique fort pour remettre en question des représentations un peu stéréotypées et plus généralement le modèle de la décision vécue en médecine. / What is a decision ? How is a decision constructed, processed in real life ? Is a decision always temporally situated between deliberation and action ? Is it the action that ruptures reality at that point ? To explore these questions and question the limits of decision-making, this work has been created from an experience rather than theoretical analysis. Parental narration about the loss of their newborn in the NICU, three years before, in the aftermath of e decision to forgo life saving treatment, enlightens our analysis about what decision making actually is. Parental retrospective view and discourse gathered during a research interview unveil a unknown world of emotions and dramatic circumstances. In this context parents have to decide. It is with contradictory feelings towards their newborn and dependancy on caregivers that parents have come closer to their child and decided themselves. We enlighten the resource they have found insight themselves to reach from these requests from the carers.In this context, speech acts are brought up : by the fact of saying their decision, parents succeed in making their mind up but they do not decide what physician’s actions will be. Parents also speak about their present life and feelings ; the present time is seen as the future of a past bygone but that goes on in the memory. Today, they describe their crossing of the mourning. The lost child’s, scarcely known, appears now as a soul, with a power that exceeds largely what could be imagined. Feelings of guilt and responsibility experienced towards oneself and towards their dead child give sense to the past. These feelings retrospectively participate in creating a view of oneself as an actor in what happened. Deliberation seems possible even after the child’s death. Il puts in the aftermath, a form of human freedom ad rationality. Finally, we return to the world of the caregivers and end with an analysis of the conditions of a “sufficiently” good decision, acceptable in the long term for the parents.

<p>For most parents there is no imaginable event more devastating than the death of their child. Nevertheless, while bereaved parents grieve they are also expected to carry on with their life. The day-to-day activities that were once routine for these parents may now be challenging due to the emotional turmoil they are experiencing. To date parental bereavement has been described as complex, intense, individualized, and life-long and their grief responses are interwoven with their daily activities, but the nature of their daily life challenges are not known. </p><p>This dissertation highlights the significance of how parents respond to their bereavement challenges because bereaved parents have higher morbidity and mortality rates than non-bereaved parents or adults who have lost their spouse or parents. Many bereaved parents in their daily routines include activities that allow them to maintain a relationship with their deceased child. These behaviors have been described as “continuing bonds”, but with this dissertation the continuing bonds concept is analyzed to provide a clear conceptual definition, which can be used for future research.</p><p>Using the Adaptive Leadership Framework as the theoretical lens and a mixed method, multiple case study design, the primary study in this dissertation aims to provides knowledge about the challenges parents face in the first six months following the death of their child, the work they use to meet these challenges, and the co-occurrence of the challenges, and work with their health status. Bereaved parents challenges are unique to their individual circumstances, complex, interrelated and adaptive, as they have no easy fix. Their challenges were pertaining to their everyday life without their child and classified as challenges related to: a) grief, b) continuing bonds, c) life demands, d) health concerns, f) interactions, and g) gaps in the health care system. Parents intuitively responded to the challenges and attempted to care for themselves. However, the role of the healthcare system to assist bereaved parents during this stressful time so that their health is not negatively impacted was also recognized. This study provides a foundation about parental bereavement challenges and related work that can lead to the development and testing of interventions that are tailored to address the challenges with a goal of improving bereaved parents health outcomes.</p> / Dissertation

abstract: A child’s death evokes intense and long-lasting grief in parents. However, few interventions exist to address the needs of this population. This mixed methods project used secondary data to evaluate the impact of a four-day, grief-focused mindfulness-based retreat on bereaved parents. A quasi-experimental design with two nonequivalent groups (intervention group n = 25, comparison group n = 41) and three observations (pretest and two posttests) was used. Mixed-model repeated-measures analyses of variance were used to assess change over time for the intervention group and relative to a no-intervention comparison group. Outcome measures were depressive and anxious responses, measured by the Hopkins Symptom Checklist-25 (HSCL-25); trauma responses, measured by the Impact of Event Scale-Revised (IES-R); mindfulness, measured by the Five Facet Mindfulness Questionnaire (FFMQ); and self-compassion, measured by the Self-Compassion Scale-Short Form (SCS-SF). The intervention group was expected to show significant decreases in psychological distress and significant increases in mindfulness and self-compassion over time and relative to the comparison group. The qualitative component consisted of semi-structured interviews with nineteen retreat participants using a constructivist phenomenological approach in order to obtain a richer understanding of the retreat’s impact on participants’ lives. There were significant time by condition interactions with small to medium effect sizes for the IES-R and its subscales, the HSCL-25 and its depression subscale, and three FFMQ scales (describe, act with awareness, and nonjudge), all favoring the intervention group. However, not all benefits were maintained at follow-up. Psychoeducation and relationships emerged as key qualitative themes. Psychoeducation included benefits related to present-moment awareness, fully inhabiting grief, self-compassion, emotional equanimity, and reduced distress or judgment of distress. Relationships included benefits related to giving and receiving social support, emotional expression and sharing, validation and normalization of grief-related experiences, resonance and self-other awareness, self-appraisal, changes in relationships, and connection to a deceased child. Mindfulness seemed to be a key component in reducing trauma responses. Relationship factors, combined with psychoeducation and present-moment awareness, seemed responsible for increasing participants’ capacity for nonjudgmental acceptance of experiences. The retreat may be an effective intervention for helping parents cope with and express their grief and warrants further study. / Dissertation/Thesis / Doctoral Dissertation Social Work 2019

Facing the death of a loved one is often a traumatic experience; when the deceased is one's own child, the loss may be the most stressful event of one's life. There has been very little research into the phenomenon of being a bereaved parent. This study is a phenomenological investigation into the lived experience of being a bereaved parent and whether resilience or recovery plays a role in how parents move through and eventually past such a loss to continue with their own lives. Previous research has indicated that adjustment to traumatic experiences can take multiple pathways or trajectories, depending on a variety of factors within the individual coping with the stressful event. This study involved an investigation into these pathways through the lived experiences of those who suffered the loss of a child, in an effort to determine whether resilience or recovery influenced a parent's ability to survive the death. Ten bereaved parents were interviewed to learn whether resilience or recovery affected their ability to cope and function in a healthy way despite the loss. These interviews were analyzed to determine whether there were common themes among unrelated bereaved parents, and whether they resonated with the concept of resilience or that of recovery. The results of this study indicated resilience to be a healthier method of adjustment for bereaved parents, with recovery being an almost offensive concept for those who participated. These results allow for a greater understanding of the lived experience of being a bereaved parent, as well as instruct those in helping professions in how best to serve bereaved parents who need to adapt to new lives that now proceed without the beloved child.

Thesis (MA.(Theology)Trauma)-University of Pretoria, 2007. / Includes bibliographical references (leaves 83-88)

Thesis (D. Min.)--Mid-America Baptist Theological Seminary, 2004. / Includes bibliographical references (leaves 165-171).

Thesis (D. Min.)--Midwestern Baptist Theological Seminary, 2005. / Abstract. Includes bibliographical references (leaves 126-128).

Project (D. Min.)--New Orleans Baptist Theological Seminary, 2007. / Abstract and vita. Includes project in ministry report. Includes bibliographical references (leaves 194-201, 49-56).

Thesis (D. Min.)--New Orleans Baptist Theological Seminary, 2007. / Abstract and vita. Includes final project proposal. Includes bibliographical references (leaves 139-142, 56-57).