BACKGROUND: Family caregivers provide the majority of care for people with Parkinson's disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life.
OBJECTIVE: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD.
METHODS: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed.
RESULTS: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD.2) Healthcare professionals do not always know what PD really means. Most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one's care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients' preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided.
CONCLUSION: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals' awareness of family and bereaved caregivers' needs may mitigate these long-term detrimental effects.
Background: Research on what children wished they had done differently after their sibling's death has not been reported.
Objective: Examine what children wished they had/had not done, and their coping after a sibling's neonatal/pediatric intensive care unit/emergency department (NICU/PICU/ED) death.
Design: Qualitative data are part of a longitudinal mixed methods study of 6- to 18-year-olds interviewed at 2, 4, 6, and 13 months after a sibling's death.
Setting/Subjects: Ninety-five school-aged children and 37 adolescents (58% female; 30% Hispanic, 50% black, 20% white).
Measurements: Children responded to three open-ended questions: Thinking about your sibling's death, are there things you wish you (1) had done? (2) had not done? (3) What do you do to deal with your sibling's death? Conventional content analysis procedures were used.
Results: Children wished they had spent more time, talked and played more with their sibling, saved their sibling, taken care of their sibling more, and been able to see their sibling grow up. They wished they had not been mean/yelled at their sibling, complained/argued with mother about their sibling, and kept their feelings inside. Children coped by talking with family, friends, and the deceased; playing, reading, watching TV; avoiding thoughts about and remembering their sibling; crying, keeping calm, praying; living for their sibling. Resuming their usual activities, trying to be happy, and laughing also helped children cope.
Conclusions: Children commented more about what they wish they had done (n = 317) and less about what they wish they had not done (n = 107). Children talked to others and tried resuming usual activities to cope.
Purpose: The aim of this study was to gain more insight into the psychosocial well-being of the recently bereaved spouses who took care of their partners with cancer.
Method: A qualitative study was developed, taking a phenomenological approach. Eleven former caregivers and spouses of patients who died of cancer at, or after, the age of 64, participated in individual in-depth interviews. Only caregivers who were bereaved for a minimum of three months and maximum of one year were interviewed. The analysis of the data was based on the Qualitative Analysis Guide of Leuven.
Results: The first moments of bereavement included feelings of disbelief, regret and relief. A feeling of being overwhelmed during this time was reported by some, others sought distraction from their grief. Loneliness, emotional fluctuations and a sense of appreciation for the support of loved ones were dominant themes. Also, gratitude and the importance of consolation played a role in the participants' well-being. When participants addressed the matter of moving forward in life, most explained how they wanted to keep the memories of their partner alive while rebuilding their lives.
Conclusions: The present study offers insight into the experiences of the bereaved spousal caregiver and highlights the need of social support during the bereavement period. All participants expressed loss-oriented and restoration-oriented coping strategies. Also, loneliness is considered a dominant feeling throughout the bereavement period. Social contact can ease these feelings of loneliness through providing either distraction or possibilities to share the burden. This paper emphasized the importance of improving access to healthcare professionals during bereavement.
Background: While grief research has focused on death-related losses and distressed outcomes, contemporary findings suggest that role losses can lead to grief, and growth can accompany grief. The current study aimed to replicate and extend the Papa, Lancaster, & Kahler, 2014 study by: (1) assessing common loss responses (prolonged grief, major depression, posttraumatic stress) and role centrality among bereaved, divorced, and unemployed individuals, and (2) exploring posttraumatic growth and stress appraisals among loss groups.
Method: A cross-sectional online survey was completed by 372 recently bereaved, divorced, and unemployed individuals. Exploratory factor analysis assessed common loss responses in the bereaved group. In the sample, multiple regressions assessed the relationship between role centrality, stress appraisals, and outcome variables (prolonged grief, posttraumatic growth); correlational analysis assessed the relationship between posttraumatic growth and psychopathology variables; qualitative analysis assessed examples of posttraumatic growth.
Results: A subset of each loss group reported prolonged grief and posttraumatic growth. Prolonged grief was a distinct factor from major depression and posttraumatic stress. Role centrality and stress appraisals were significantly associated with outcome variables. There was a weak, positive relationship between posttraumatic growth and psychopathology variables.
Limitations: Limitations included convenience sampling and a cross-sectional study design, which precluded assessing responses over time. Strengths included replicating existing literature and incorporating a strength-based measure.
Conclusions: Prolonged grief can emerge from death-related loss and role loss. Also, posttraumatic growth can accompany prolonged grief. In clinical practice, loss can be conceptualized broadly beyond bereavement and addressed with the potential for posttraumatic growth.
In few periods in human history have bereavement and grief been on so many people's minds as they are today. As the coronavirus disease 2019 (COVID-19) ravages the world, we have seen many perish in a short time. Many have died alone because of requirements for physical distancing. Even more will succumb as COVID-19 continues to spread. Moreover, deaths from other causes, numbering over 50 million annually, are also happening amid physical distancing and other COVID-19-related challenges. The pandemic is affecting the way terminally ill patients are being cared for, when and how people are dying of other causes, and how bodies are being handled and bereavement rituals performed. The bereaved are required to grieve without the support of usual social and cultural rituals. Grieving is further encumbered by cascading life stressors deriving from policies needed to mitigate the pandemic. Though we are often heartened by human resilience in response to death and other hardships, for some, the burden of this pandemic will be too much. Among other mental health problems, we will likely see an increase in prolonged grief disorder. In this commentary, we review the new diagnosis of prolonged grief disorder and outline why we might anticipate increased rates of this condition on the heels of COVID-19, especially among older persons. We suggest ways we might mitigate this emerging problem.
Person-centered, family-oriented services are integral to palliative and end-of-life care. Effective communication with providers informs the quality of the dying experience for patients and how families fare in bereavement. This paper reports findings from a study exploring how communication and care in the later stages of an advanced illness influence family caregivers’ well-being in bereavement. A concurrent triangulation design was used to analyze data collected during semi-structured interviews with 108 recently bereaved caregivers from a single hospice agency in Western New York. Findings from this study suggest that family caregivers assume the role of interpreter and advocate while engaged in both formal and informal communication with health care providers at the end of care-recipients’ lives. Findings also suggest that families are more likely to feel emotionally prepared for loss and grief when health care providers are available to communicate in a concise, consistent, and compassionate manner. The results illuminate the important connection between communication during the transition from late-stage illness to end-of-life care and preparation for bereavement. The paper concludes with a discussion of how findings from this study align with recent concerted efforts to establish standards and competencies for social work education and practice in palliative care.
Background: Bereaved individuals are known to have greater health risks, such as insomnia, excessive alcohol intake, and depression. However, few studies have investigated the relation between these risks and bereavement outcomes, namely complicated grief (CG) and major depressive disorder (MDD). This study aimed to assess the relation between insomnia, changes in alcohol consumption, and CG or MDD.
Methods: A cross-sectional, self-report questionnaire survey was conducted between May and July 2014 on 20 acute hospitals, 133 inpatient palliative care units (PCUs), and 22 home hospice services. Questionnaires were sent to the bereaved family members identified by each institution.
Results: Data were obtained from 814, 7,291, and 1,018 family members from acute hospitals, PCUs, and home hospice services, respectively. Significant associations were found between CG or MDD and all sleep condition symptoms (OR: 1.48-12.88; all p<0.0001) and between changes in alcohol intake (OR: 1.63-3.55; all p<0.0001).
Limitations: The majority were family members who had lost a loved one to cancer in a PCU, the psychological health of nonresponders was unavailable, the results were based on self-report data, and no clinical assessment interviews were done; this could limit the generalizability of the findings.
Conclusions: Overall, 14% and 17% of the respondents reported increased and decreased alcohol consumption, respectively, and 46–61% reported experiencing insomnia. Interestingly, both increase and decrease in alcohol intake after bereavement were risk factors of possible CG or MDD. These results suggest that assessing sleep conditions and alcohol consumption might help prevent severe psychological impairments in bereaved individuals.
Objective: Grief reactions in bereaved caregivers of cancer patients have been identified individually as distinct prolonged grief disorder (PGD)- and major depressive disorder (MDD)-symptom trajectories, but no research has examined whether patterns of change (trajectories) for PGD and MDD symptoms synchronize during bereavement. We conducted a secondary analysis study to investigate the construct distinctiveness of PGD and MDD by simultaneously identifying and examining similarities and differences between bereaved caregivers’ PGD- and depressive-symptom trajectories from immediately postloss through 2 years later.
Methods: PGD and depressive symptoms were measured for 849 cancer patients’ caregivers over their first 2 years of bereavement using 11 grief-symptom items of the Prolonged Grief-13 scale (P-11) and the Center for Epidemiologic Studies-Depression (CES--D) scale, respectively. PGD- and depressive-symptom trajectories were identified using latent class growth analysis with continuous latent-class indicators (total PG-11 and CES-D scores). Concordance of caregiver participants’ membership in PGD- and depressive-symptom trajectories was examined by a percentage and a kappa value.
Results: Five distinct symptom trajectories were identified for both PGD and MDD, with four shared trajectories (endurance, transient-reaction, resilience, and prolonged-symptomatic) having different prevalence rankings. Nonetheless, unique trajectories were identified for PGD (potential recurrence) and depressive symptoms (chronically distressed), respectively. Concordance between membership in PGD- and depressive-symptom trajectories was moderate (61.3%, kappa [95% CI]: 0.49 [0.44, 0.53]).
Conclusion: GD and MDD are related but distinct constructs indicated by the unique trajectories identified for each, different prevalence rankings for PGD- and depressive-symptom trajectories, and moderate concordance between membership in PGD- and depressive-symptom trajectories, respectively.
Context: Keepsakes are a relatively unexplored form of bereavement support that is frequently provided as part of the 3 Wishes Project (3WP). The 3WP is a palliative care intervention in which individualized wishes are implemented in the adult intensive care unit for dying patients and their families.
Objectives: We aimed to characterize and enumerate the keepsakes that were created as part of the 3WP, and to understand their value from the perspective of bereaved family members.
Methods: We performed a secondary analysis of family interviews during a multi-center study on the 3WP and characterized all wishes that involved keepsakes. Sixty interviews with family members regarding the 3WP were re-analyzed using qualitative analysis to identify substantive themes related to keepsakes.
Results: Of 730 patients, 345 (47%) received keepsakes as part of their participation in 3WP. The majority of keepsakes were either tangible items that served as reminders of the patient’s presence (thumbprints, locks of hair) or technology-assisted items (photographs, word clouds). The median cost per keepsake wish was $8.50 (IQR $2.00-$25.00). Qualitative analysis revealed two major themes: 1) Keepsakes are tangible items that are highly valued by family members, and 2) The creation of the keepsake with clinical staff is valued and viewed as a gesture of compassion.
Conclusion: Keepsakes are common wishes that clinicians in the ICU are able to provide and sometimes co-create with families when patients are dying. Both the offering to create the keepsake and receipt of the final product are perceived by family members as helpful.
Context: Cancer is the leading cause of nonaccidental death in childhood, with the death of a child representing a devastating loss for families. Peer support offers a valuable way to support parents' adjustment in bereavement. The By My Side book provides written peer support by sharing bereaved parents' stories to normalize grief experiences and reduce parents' isolation. It is available free of charge.
Objectives: This project evaluated the acceptability, relevance, emotional impact, and usefulness of By My Side.
Design: Bereaved parents and health care professionals (HCPs) provided feedback via a questionnaire. We used descriptive statistics and qualitative analysis of open-ended responses to analyze the data.
Setting/Participants: We mailed a study invitation and evaluation questionnaire to parents and HCPs who ordered a copy of By My Side.
Results: About 24 bereaved parents and seven HCPs provided feedback. Parents thought the book's length (91.7%) and amount of information (83.3%) was just right. About 75% of parents reported that the book made them feel that their reactions to their child's death were normal and/or appropriate. Parents reported positive and negative emotional reactions to the book (e.g., 87.5% felt comforted, 87.5% felt sadness). All parents and HCPs reported that the book provided useful information about grief. About 83.4% of parents and 85.7% of HCPs would recommend it to others.
Conclusion: By My Side was acceptable and useful to bereaved parents and HCPs. Results suggest that peer support in written form may help normalize aspects of grief and comfort parents bereaved by childhood cancer.
Comment réagit une mère lorsqu’elle apprend que l’enfant qu’elle porte est atteint d’une grave maladie génétique ? Comment une femme portée par sa foi chrétienne peut-elle vivre le décès prématuré de cet enfant ?
Dans son témoignage poignant, Aude Lombard montre comment la présence du Christ dans sa vie - et dans celle son mari – l’a aidée et soutenue tout au long de cet événement si particulier.
Il s’agit à la fois d’un hommage à sa fille Juliette, porteuse d’une forme rare de trisomie et décédée au cours du huitième mois de grossesse, et d’un vibrant témoignage de foi, qui montre que, malgré l’épreuve, il est possible d’en tirer du positif, avec l’aide de Dieu.
Dès l’annonce du diagnostic, à la vingtième semaine de grossesse, de nombreuses questions existentielles et spirituelles sont venus assaillir l’esprit d’Aude. Cette nouvelle a fait l’effet « d’une déflagration intérieure, mêlée d’une sidération brumeuse », écrit-elle.
Mais au terme de ce parcours de deuil, qui aura été pour elle un véritable combat spirituel, Aude peut dire : "Je sais aujourd’hui que je peux passer par des épreuves sans être détruite, voire en étant fortifiée."
Son récit est un puissant encouragement pour tous ceux qui traversent des épreuves analogues.
Grief is a common, instinctive, natural reaction that occurs following the loss of a loved one. This human experience is universal and will affect most people during a lifetime and cause a range of emotional and physical distress that can feel overwhelming and intolerable. In late life especially, people are exposed to an increasing number of losses and often grieve multiple losses at the same time. Death of a spouse is thought to be the most common and difficult loss in older adults, with nearly one-third of those aged 65 and older being widowed. Bereavement has been associated with a deterioration in mental health and physical health and thus clinicians need to be aware of the risk factors as well as the principles for treatment. This chapter explores grief in older adults including the impact grief has on an individual, the factors of “normal” grief and bereavement, complicated grief, mental health consequences of bereavement, and evidence-based practices for treatment.
Traditional Chinese art practices such as brush painting and calligraphy are thought to promote self-development through holistically engaging both physical and mental health. This pilot study investigated the beneficial effects of a community-based self-help group incorporating Chinese art practices as a culturally adapted bereavement intervention. Twenty-six Chinese parents aged over 49 years and who had lost their only child participated in a 20-session Chinese brush painting group over a 6-month period. Ten bereaved parents from the same community who did not participate in the art course but received living support were recruited as a control group. Compared with the control group, the art practice group exhibited a pre-post intervention effect in terms of promoting positive affect and preventing deterioration of prolonged grief symptoms, particularly through the improvement of accessory grief symptoms (e.g., "emotional numbness due to the loss", and "feeling that life is unfulfilling, empty or meaningless after the loss"). No effect was found on negative affect. These findings indicate that a culturally adapted community-based art group may be an effective means of improving grief-related health.
While great strides have been made in improving childhood mortality, millions of children die each year with significant health-related suffering. More than 98% of these children live in low- and middle-income countries (LMICs). Efforts have been made to increase access to pediatric palliative care (PPC) services to address this suffering in LMICs through policy measures, educational initiatives, and access to essential medicines. However, a core component of high-quality PPC that has been relatively neglected in LMICs is grief and bereavement support for parents after the death of their child. This paper reviews the current literature on parental grief and bereavement in LMICs. This includes describing bereavement research in high-income countries (HICs), including its definition, adverse effect upon parents, and supportive interventions, followed by a review of the literature on health-related grief and bereavement in LMICs, specifically around: perinatal death, infant mortality, infectious disease, interventions used, and perceived need. More research is needed in grief and bereavement of parents in LMICs to provide them with the support they deserve within their specific cultural, social, and religious context. Additionally, these efforts in LMICs will help advance the field of parental grief and bereavement research as a whole.
BACKGROUND: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect on their child's end-of-life care to identify which components of decision-making, supportive services, and communication were helpful, not helpful, or lacking.
METHODS: An anonymous survey about end-of-life experiences was sent to families of children treated at a single institution who died of a malignancy between 2010 and 2017.
RESULTS: Twenty-eight surveys were returned for a 30.8% response rate. Most of the bereaved parents (61%) reported a desire for shared decision-making; this was described by 52% of families at the end of their child's life. There was a statistically significant association between how well death went and whether the parental perception of actual decision-making aligned with desired decision-making (P = .002). Families did not utilize many of the supportive services that are available including psychology and psychiatry (only 22% used). Respondents felt that additional services would have been helpful.
CONCLUSIONS: Health care providers should strive to participate in decision-making models that align with the preferences of the patient and family and provide excellent communication. Additional resources to support families following the death of a child should be identified for families or developed and funded if a gap in available services is identified.
Le deuil causé par le décès d’une personne importante est l’événement le plus difficile de la vie d’un enfant. L’expression clinique du deuil chez l’enfant dépend de différents facteurs et du niveau de développement affectif. L’état de deuil traumatique de l’enfant n’est pas reconnu par le DSM-5. Il se caractérise par des symptômes traumatiques persistants, intrusifs et de l’évitement. Dans le contexte de traumatismes de masse, les enfants endeuillés présentent un risque élevé de complications de type biopsychosociaux. Un enfant sur cinq développera des complications. Il est important d’évaluer ces enfants afin de mieux comprendre leur fonctionnement et de proposer une thérapie ciblée et fondée sur des preuves. Développer des recherches sur ce sujet est un véritable défi pour la pédopsychiatrie.
BACKGROUND: Family caregivers carry heavy end-of-life (EOL) caregiving burdens, with their physical and psychological well-being threatened from caregiving to bereavement. However, caregiving burden has rarely been examined as a risk factor for bereavement adjustment to disentangle the wear-and-tear vs relief models of bereavement.
Objective/Methods: Preloss and postloss variables associated with severe depressive symptoms and quality of life (QOL) for 201 terminally ill cancer patients' caregivers over their first 2 years of bereavement were simultaneously evaluated using multivariate hierarchical linear modeling. Severe depressive symptoms (Center for Epidemiological Studies Depression Scale score > 16) and QOL (physical and mental component summaries of the Medical Outcomes Study Short-Form Health Survey) were measured 1, 3, 6, 13, 18, and 24 months postloss.
RESULTS: Caregivers' likelihood of severe depressive symptoms and mental health-related QOL improved significantly from the second year and throughout the first 2 years of bereavement, respectively, whereas physical health-related QOL remained steady over time. Higher subjective caregiving burden and postloss concurrent greater social support and better QOL were associated with bereaved caregivers' lower likelihood of severe depressive symptoms. Bereaved caregivers' mental health-related QOL was facilitated and impeded by concurrent greater perceived social support and severe depressive symptoms, respectively.
CONCLUSION: Severe depressive symptoms and mental health-related QOL improved substantially, whereas physical health-related QOL remained steady over the first 2 years of bereavement for cancer patients' caregivers. Timely referrals to adequate bereavement services should be promoted for at-risk bereaved caregivers, thus addressing their support needs and facilitating their bereavement adjustment.
PURPOSE: Perinatal and neonatal palliative care guidelines recommend the provision of photographs and other mementos as an element of care for parents bereaved by neonatal loss. However, little is known about parents' perceptions of such bereavement interventions. This study explored the significance of memory-making for bereaved parents and the impact of memory-making on parents' experience of loss following neonatal loss.
DESIGN AND METHODS: We conducted semi-structured interviews with 18 bereaved parents. A grounded theory approach informed by Corbin and Strauss was used to underpin data sampling, data collection and data analysis. A constant comparative approach was used to engage in open, axial and selective coding to distil parents' stories into categories supporting a core concept.
RESULTS: "Creating evidence" emerged as a key theme in the grounded theory of memory-making in bereavement care for parents following neonatal loss. Creating evidence involved taking photographs, creating mementos, as well as involving friends and family during the baby's time in the Neonatal Unit.
CONCLUSIONS: Creating evidence affirmed the life of the baby and the role of the parents. Creating evidence was a significant element of memory-making that had a positive impact on parents' experience of bereavement.
PRACTICE IMPLICATIONS: Parents should be supported to create evidence of their baby's life, through taking photos, creating mementos, and involving others in their baby's care. Such interventions provide affirmation of the baby's life and of the individual's role as a parent.
Caregiving and bereavement outcomes are strongly influenced by socio-cultural context. Past research has found higher levels of caregiver burden and psychological morbidity in Portuguese compared to Brazilian caregivers. This study compared Brazilian and Portuguese family caregivers in palliative care to identify differences in psychological morbidity and caregiver burden and their relationship with psychosocial factors such as sociodemographic variables, circumstances of end-of-life care and dying, social support, family functioning, and perception of quality of care. Prospective data were collected from convenience samples of family caregivers in Brazil (T0 n = 60; T1 n = 35) and Portugal (T0 n = 75; T1 n = 29) at two separate time points—during caregiving (T0), and during the first two months of bereavement (T1). The study samples consisted mostly of women, offspring, and spouses. In both countries, family caregivers devoted most of their day to taking care of their sick relatives and reported a lack of practical support. Portuguese caregivers had higher levels of burden than Brazilian caregivers, and in both populations a greater burden was associated with more psychopathological symptoms. Higher caregiver burden among Portuguese caregivers was associated with the circumstances of death and the perceived lack of emotional support. Among Portuguese caregivers, symptomatology persisted during bereavement, reaching significantly higher levels of anxiety, somatization, and peritraumatic symptoms compared to the Brazilian sample. These results show differences between family caregiver samples in Portugal and Brazil during the bereavement process. Understanding the underlying cultural patterns and mechanisms requires future research.
The loss of a significant other often creates emotional distress for family members that can hamper the ability to meet everyday challenges and pursue wellness. The aim of this qualitative study was to understand the challenge of losing a significant other for older adult family members and the approaches identified as most helpful to promote their own well-being after this person dies. Story inquiry method guided the interview process with 15 older adult bereaved family members residing in a continuing care retirement community. Theory-guided content analysis was used for data analysis. Two themes described the challenges: uneasiness that permeates everyday living and precious memories and patterns of disconnect that breed discontent. Appreciating the rhythmic flow of everyday connecting and separating and embracing reality as situated in one’s lifelong journey are the themes that encompass the helpful approaches used by participants. This study provided insights about the benefits of living in this community such as social networking and a possible drawback such as the frequency of death among residents. Future research should continue to investigate social service resources that older adults find most helpful after a significant other dies and the use of reminiscence groups as a form of bereavement support.