BACKGROUND: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by families receiving end-of-life care. We report the most helpful aspects of care provided during the end of life and identify opportunities to improve care delivery during this critical time.
METHODS: This study consists of 2 one-hour focus group sessions with 6 participants each facilitated by a clinical psychologist to explore the experiences of bereaved parents of pediatric oncology patients at the end of their child's life. The data were transcribed and coded using constant comparative analysis and evaluated for inter-rater reliability using intraclass correlation coefficient.
RESULTS: Four common themes were identified through qualitative analysis: (1) valued communication qualities, (2) valued provider qualities, (3) unmet needs, and (4) parental experiences. The most prevalent of these themes was unmet needs (mentioned 51 times). Subthemes were identified and evaluated. Parents described struggling with communication from providers, loss of control in the hospital environment, and challenges associated with transition of care to hospice services.
CONCLUSION: Interventions that support the complex needs of a family during end-of-life care are needed, especially with regard to coordination of care.
Background: Grieving relatives can suffer from numerous consequences like anxiety, depression, post-traumatic stress disorder (PTSD) symptoms, and prolonged grief. This study aims to assess the psychological consequences of grieving relatives after patients’ death in French palliative care units and their needs for support.
Methods: This is a prospective observational multicenter mixed study. Relatives of adult patients with a neoplasia expected to be hospitalized more than 72 h in a palliative care unit for end-of-life issues will be included within 48 h after patient admission. End-of-life issues are defined by the physician at patient admission. Relatives who are not able to have a phone call at 6-months are excluded. The primary outcome is the incidence of prolonged grief reaction defined by an ICG (Inventory Complicate Grief) > 25 (0 best-76 worst) at 6 months after patient’ death. Prespecified secondary outcomes are the risk factors of prolonged grief, anxiety and depression symptoms between day 3 and day 5 and at 6 months after patients’ death based on an Hospital Anxiety and Depression score (range 0–42) > 8 for each subscale (minimal clinically important difference: 2.5), post-traumatic stress disorder symptoms 6 months after patient’ death based on the Impact of Events Scale questionnaire (0 best-88 worst) score > 22, experience of relatives during palliative care based on the Fami-Life questionnaire, specifically built for the study. Between 6 and 12 months after the patient’s death, a phone interview with relatives with prolonged grief reactions will be planned by a psychologist to understand the complex system of grief. It will be analyzed with the Interpretative Phenomenological Analysis. We planned to enroll 500 patients and their close relatives assuming a 25% prolonged grief rate and a 6-month follow-up available in 60% of relatives.
Discussion: This study will be the first to report the psychological consequences of French relatives after a loss of a loved one in palliative care units. Evaluating relatives’ experiences can provide instrumental insights for means of improving support for relatives and evaluation of bereavement programs.
Trial registration: NCT03748225 registered on 11/19/2018. Recruiting patients.
OBJECTIVE: This is the first known study which examines the evolutionary nature of spousal interaction patterns among Asian parents of children with chronic life-threatening illness, from the time of providing care to their child through bereavement. This study is informed by earlier findings that when a child is diagnosed with a chronic life-threatening illness, parents are faced with multiple stressors, leaving them with little time to invest in their spousal relationship.
PARTICIPANTS AND SETTING: A constructivist-phenomenological research paradigm was adopted and meaning-oriented interviews were conducted with 20 parental units (i.e., 6 couples, 12 lone mothers and 2 lone fathers) of Chinese, Malay and Indian ethnicities who lost their child to chronic life-threatening illness in Singapore.
RESULTS: Qualitative thematic analysis of the data revealed four themes, which describe the evolutionary nature of spousal interaction patterns among Asian parents of children with chronic life-threatening illness, from caregiving through bereavement. Findings reveal participants' tendency to concentrate on pragmatic, solution-focused communication during the period of caregiving (pragmatic interaction), avoid discussion about their emotional pain as a means of protecting their spouse (partner-oriented self-regulation), respect and acknowledge their spouse's personal coping strategies (empathic responding) and show greater appreciation and emotional expression within the spousal relationship after their child's death (affective appreciation).
CONCLUSION: Engaging in pragmatic discussions, deferring emotion-focused and potentially distressing conversations, and acknowledging their spouse's need for personal space are important coping strategies for Asian couples facing their child's chronic life-threatening illness and in the immediate aftermath of his/her death. Bereaved couples who have processed their grief individually feel ready to share their reflections with their spouse, deriving meaning and greater relational closeness through such disclosure. These findings are discussed from a cultural lens, with recommendations for healthcare professionals working with Asian parents of children with chronic life-threatening illness.
BACKGROUND: Death of one's infant is devastating to parents, negatively impacting couple relationships and their own health. The impact of a prenatally diagnosed life-limiting fetal condition (LLFC) on parents of minority status is unclear.
AIM: This comparative mixed methods case study examined the person characteristics, quality of perinatal palliative care (PPC) received and parent health outcomes.
METHODS: Bereaved couples, 11 mothers and 3 fathers of minority or mixed races (11 African American and Latino, 1 White Latino and 2 White parents) completed the survey; 7 were interviewed.
RESULTS: Parents rated their general health close to good, physical health close to normal but mental health lower than the population norm. Clinical caseness (abnormal levels) of anxiety were reported in 50% of parents whereas depression scores were normal. The experience of fetal diagnosis and infant death had a negative impact on the health of 40% of participants however, parents could not identify what specifically caused their health problems. Most were satisfied with their PPC but some shared that original providers were not supportive of pregnancy continuation. After the baby's death, 71% reported closer/stronger couple relationships. Two contrasting cases are presented. Once parents found PPC, their baby was treated as a person, they spent time with their baby after birth, and found ways to make meaning through continuing bonds.
CONCLUSION: Despite high overall satisfaction with PPC, bereaved parents were deeply impacted by their infant's death. Mixed methods case study design illuminated the complicated journeys of parents continuing their pregnancy with a LLFC.
Despite UK national guidance on care after death, it is clear that the bereaved family can experience distress while waiting for the patient's death to be verified. This distress can escalate if there is a delay in verification. Anecdotally, such delays particularly occur out of hours and in community settings. Verification of death is a clinical task and an act of care whereby the identity of the person and death is confirmed. In addition, the subsequent providers of care to the deceased, such as families, mortuary teams, funeral directors and cremation services, have their health and safety protected by the provision of pertinent patient-specific information, for instance, infection risk and implantable devices, within the bounds of confidentiality. During this time, the bereaved family may also receive emotional support and information from the skilled clinician. Registered Nurse Verification of Expected Adult Death (RNVoEAD) guidance and associated competencies have recently been developed to ensure that the registered nurses involved in the patient's care can feel confident about their responsibilities and competent in the process of verifying death. It is hoped that this guidance will help to avoid delays that may cause additional distress to grieving families. This article sets out the rationale for the guidance, as well as discussing outstanding concerns and proposals for future considerations.
Many older adults have experienced the death of a significant other. Understanding their perspectives from this past experience may heighten nursing insights about the type of care they desire at the end of their lives. The aim of this secondary analysis was to describe how the death of a significant other influenced older adults’ perspectives about their end of life. Fifteen older adults residing in a continuing care retirement community participated in the primary study that explored the challenge of losing a loved one. Inductive content analysis was used to derive 4 themes to explain their perspectives about end of life: peacefully slip away—no heroics, familiarity—making plans that stick, tying up loose ends—what’s left to do, and accepting—my time is up. This study’s findings imply that nurses, with medical providers, should openly discuss with older adults their end-of-life concerns and care desired. Clinicians should receive education such as the COMFORT conversation and End-of-Life Nursing Education Consortium courses. Further research should explore whether older adults may be more encouraged to formulate advance directives after the death of significant others and end-of-life issues in retirement communities. Increasing public awareness of palliative and hospice services is needed.
Background: Several countries have regulated euthanasia and physician-assisted suicide (PAS). Research has looked at the experiences of patients, family, and professionals. However, little is known of the effects on bereaved individuals.
Aims: We aimed to assess (a) what is known about the grief and mental health of people bereaved by euthanasia or PAS and (b) the quality of the research.
Method: Systematic review according to PRISMA guidelines with searches in Cinahl, Embase, PsycINFO, Pubmed, and Scopus.
Results: The searches identified 10 articles (eight studies), and the study quality was fair. People bereaved by euthanasia/PAS generally had similar or lower scores on measures of disordered grief, mental health, and posttraumatic stress compared with those who died naturally. Lack of social support and secrecy may compound their grief. Being involved in the decision-making process and having the feeling of honoring the deceased's will may facilitate their grief.
Limitations: Studies used self-reports from non-random self-selected participants, were retrospective, and were conducted in only three countries.
Conclusion: There is little evidence of increased risk of adverse grief or mental health outcomes in people bereaved by euthanasia/PAS. As more countries legalize assisted dying, high-quality studies of the factors that may hinder or facilitate the grief process are needed.
Background: Determining the effect of caregiving and bereavement remains a challenge. To date, no study has employed a comparison group to investigate caregivers’ grief, quality of life and general health in relation to non-caregivers.
Aim: We aimed to determine how caregivers’ grief, quality of life and general health changed following death compared to non-caregivers and whether pre-death grief predicted these outcomes.
Design: A prospective, longitudinal study of family caregivers and a comparison group matched for age, gender and postcode was conducted. All participants completed questionnaires at four points – once pre-death and three times post-death (3–4 months, 6–7 months and 9–10 months).
Setting/participants: Participants (N = 70) were family caregivers of persons receiving palliative care, mostly for cancer, recruited from three palliative care providers in Western Australia and matched comparisons recruited from advertisements.
Results: There were significant differences between the caregivers’ and comparisons’ grief, general health and quality of life at pre-death, 3–4 months and 6–7 months post-death, but not at 9–10 months post-death. The rate of progression in these constructs following death was independent from the intensity of pre-death grief. However, caregiver prolonged grief score significantly predicted prolonged grief score at 6–7 and 9–10 months post-death.
Conclusion: It took 9–10 months for the caregivers’ grief, general health and quality of life to correspond to the comparison group. These findings present an opportunity for palliative care research and practice to consider how best to support the majority of caregivers without grief complications so that their pre- and post-death support needs are realised.
Background: Internationally there is an increasing concern about the quality of end-of-life care (EoLC) provided in acute hospitals. More people are cared for at end of life and die in acute hospitals than in any other healthcare setting. This paper reports the views of bereaved relatives on the experience of care they and the person that died received during their last admission in two university adult acute tertiary hospitals.
Methods: Relatives of patients who died were invited to participate in a post-bereavement postal survey. An adapted version of VOICES (Views of Informal Carers - Evaluation of Services) questionnaire was used. VOICES MaJam has 36 closed questions and four open-ended questions. Data were gathered in three waves and analysed using SPSS and NVivo. 356 respondents completed the survey (46% response rate).
Results: The majority of respondents (87%: n = 303) rated the quality of care as outstanding, excellent or good during the last admission to hospital. The quality of care by nurses, doctors and other staff was highly rated. Overall, care needs were well met; however, findings identified areas of care which could be improved, including communication and the provision of emotional and spiritual support. In addition, relatives strongly endorsed the provision of EoLC in single occupancy rooms, the availability of family rooms on acute hospital wards and the provision of bereavement support.
Conclusions: This research provides a powerful snapshot in time into what works well and what could be improved in EoLC in acute hospitals. Findings are reported under several themes, including the overall quality of care, meeting care needs, communication, the hospital environment and support for relatives. Results indicate that improvements can be made that build on existing good practice that will enhance the experience of care for dying persons and their relatives. The study adds insights in relation to relative’s priorities for EoLC in acute hospitals and can advance care providers’, policy makers’ and educationalists’ priorities for service improvement.
PURPOSE/BACKGROUND: Accumulating evidence shows that bereaved family caregivers report elevated distress for an extended period, which compromises their quality of life. A first step in the development of programs to enhance bereaved caregivers' quality of life should be determining the needs they experience to manage the loss, and the needs that are not being satisfied. Thus, this study aimed to develop a new measure to assess unmet needs among bereaved family caregivers.
METHOD: The 20-item Needs Assessment of Family Caregivers-Bereaved to Cancer measure was developed and validated with bereaved cancer caregivers 5 (n = 159) and 8 (n = 194) years after the initial cancer diagnosis of the index patient, when stress in providing care to the patient was assessed.
RESULTS: Exploratory factor analysis yielded two primary factors: unmet needs for reintegration and unmet needs for managing the loss. Bereaved caregivers who were younger and ethnic minority, and who had greater earlier perceived stress of caregiving, reported their needs were more poorly met (t > 2.33, p < .05). The extent to which bereaved caregivers' needs to manage the loss were not perceived as being met was a consistent and strong predictor of poor adjustment to bereavement at both 5- and 8-year marks (t > 1.96, p < .05), beyond the effects of a host of demographic and earlier caregiving characteristics.
CONCLUSION: Findings support the validity of the Needs Assessment of Family Caregivers-Bereaved to Cancer and suggest that interventions to help bereaved caregivers manage the loss by assisting their transition to re-engagement in daily and social activities will benefit caregivers by mitigating bereavement-related distress years after the loss.
OBJECTIVE: To investigate prevalence and predictors of postloss distress, depressive and anxiety symptoms, and quality of life among bereaved family caregivers of patients with advanced cancer.
METHODS: Prospective multicenter study. Family caregivers (N = 160, mean age 56.8 years, 66% female) completed validated outcome measures (Distress Thermometer, Generalized Anxiety Disorder 7-item scale, Patient Health Questionnaire depression module 9-item scale, SF-8 Health Survey Questionnaire) 6 months after patient's discharge or death at specialist inpatient palliative care ward.
RESULTS: Clinically relevant distress was observed in 82% with sadness (89%), exhaustion (74%), sleeping problems (68%), loneliness (53%), and sorrows (52%) being the most common distress-causing problems. Moderate/severe anxiety and depressive symptoms were observed in 27% and 35%, respectively. Compared to an adjusted norm sample, quality of life was significantly impaired with exception of "bodily pain" and physical component score. Preloss caregiving (odds ratio [OR] 2.195) and higher preloss distress (OR 1.345) predicted high postloss distress. Utilization of psychosocial support services (OR 2.936) and higher preloss anxiety symptoms (OR 1.292) predicted moderate/severe anxiety symptoms, lower preloss physical quality of life (OR 0.952), and higher preloss depressive symptoms (OR 1.115) predicted moderate/severe depressive symptoms.
CONCLUSION: Preloss mental burden showed to be a consistent predictor for postloss burden and should be addressed during palliative care. Future research should examine specific caregiver-directed interventions during specialist palliative care.
OBJECTIVE: To describe the characteristics of bereaved caregivers submitted to post-loss music therapy.
METHOD: This is a cross-sectional database from a randomized clinical trial that performed music therapy for caregivers who lost their loved ones to cancer. The following variables were used for this analysis: sociodemographic, religious beliefs, previous sound-musical experiences, and experiences related to care, loss and repair processes. Descriptive statistical analyzes were performed.
RESULTS: Of the 69 participants, 85.5% had a strong bond/secure attachment with their loved ones; 68.1% followed a long death and dying process (> 6 months), which was related to a chronic disease; 88.4% did not participate in conspiracy of silence, suggesting a satisfactory communication; 60.9% reported receiving spiritual/religious support, suggesting healthy and continent support; and all participated in funeral rites.
CONCLUSION: The process of elaborating the bereavement of caregivers indicated the presence of protective factors.
This article deals with the issue of perceived social support among 40 bereaved parents who have lost a child in a terrorist attack in Israel. The aim is to gain a better understanding of the nature and quality of the formal and informal support that the parents received. The parents were interviewed using semistructured in-depth interviews. The content analysis revealed that alongside the positive aspects, the parents also emphasized the negative side of the encounter with the social environment. The positive aspects included feeling of appreciation for the assistance in the coping process. The negative aspects included a sense of abandonment and distress. The dialectic nature of the domain, together with a recognition of its importance, points to the need to reconcile between the desire on the part of the social environment to assist the bereaved parent on one hand and ways to implement it on the other hand.
Despite the increasing number of people being bereaved by suicide, little is understood concerning the experiences of those bereaved by suicide as they struggle to make sense of a loved one’s death. The current study explored the experiences of four mothers who had been bereaved by suicide and the role of support groups in the meaning-making process following bereavement by suicide. Participants were interviewed and transcribed interviews were then analysed from an interpretative phenomenological perspective. Four main themes were identified: Continuing role of the mother; A never-ending quest; Finding sanctuary; and Rising up from the ashes. These themes relate to a range of emotions following bereavement by suicide, the meaning-making process, the social context and the role of the support group. Clinical implications are discussed in relation to these findings.
Tu es handicapé. Tu es mort. Tu avais quinze ans. Yannick, ton visage est encore dessiné par le souvenir, comme un papier calque collé sur une vitre. Mais les contours s'estompent et les couleurs s'effacent, un peu comme un paysage que l'on devine à peine dans la brume. Les traits de ma fille qui vient de naître vont-ils effacer les tiens ? Et si, avec le temps, ma mémoire ne parvenait plus à les retrouver ?
Dans ce récit intimiste adressé à son frère défunt, Magali Hack explore, avec sobriété et authenticité, les douleurs et les joies de nos existences et pose des questions essentielles : la perte, la filiation et le temps qui passe.
OBJECTIVE: The identification of modifiable cognitive antecedents of trajectories of grief is of clinical and theoretical interest.
METHOD: The study gathered 3-wave data on 275 bereaved adults in the first 12-18 months postloss (T1 = 0-6 months, T2 = 6-12 months, T3 = 12-18 months). Participants completed measures of grief severity, cognitive factors (loss-related memory characteristics, negative appraisals, unhelpful coping strategies, and grief resilience), as well as measures of interpersonal individual differences (attachment and dependency). Latent growth mixture modeling was used to identify classes of grief trajectories. Predictors of class membership were identified using multinomial logistic regression and multigroup structural equation modeling.
RESULTS: Four latent classes were identified: 3 high grief classes (Stable, Low Adaptation, and High Adaptation) and a low grief class (Low Grief). When considered separately, variance in all four cognitive factors predicted membership of the high grief classes. When considered together, membership of the high grief classes was predicted by higher mean scores on memory characteristics. More negative appraisals predicted low or no adaptation from high grief severity. Losing a child also predicted membership to the stable class. Fast adaptation of high grief was predicted by a pattern of high memory characteristics but low engagement with unhelpful coping strategies.
CONCLUSIONS: The findings have implications for clinical practice and point to early cognitive predictors of adaptation patterns in grief. Findings are consistent with cognitive models highlighting the importance of characteristics of memory, negative appraisals, and unhelpful coping strategies in the adaptation to highly negative life events.
The impact of traumatic workplace death on bereaved families, including their mental health and well-being, has rarely been systematically examined. This study aimed to document the rates and key correlates of probable posttraumatic stress disorder (PTSD), major depressive disorder (MDD), and prolonged grief disorder (PGD) in family members following a workplace injury fatality. The hidden nature of the target population necessitated outreach recruitment techniques, including the use of social media, newspaper articles, radio interviews, and contact with major family support organizations. Data were collected using a cross-sectional design and international online survey. The PCL-C (PTSD), the PHQ-8 (MDD), and PG-13 (PGD) were used to measure mental health disorders. All are well-established self-report measures with strong psychometric qualities. Participants were from Australia (62%), Canada (17%), the USA (16%), and the UK (5%). The majority were females (89.9%), reflecting the gender distribution of traumatic workplace deaths (over 90% of fatalities are male). Most were partners/spouses (38.5%) or parents (35%) and over half (64%) were next of kin to the deceased worker. Most deaths occurred in the industries that regularly account for more than 70 percent of all industrial deaths-construction, manufacturing, transport, and agriculture forestry and fishing. At a mean of 6.40 years (SD = 5.78) post-death, 61 percent of participants had probable PTSD, 44 percent had probable MDD, and 43 percent had probable PGD. Logistic regressions indicated that a longer time since the death reduced the risk of having each disorder. Being next of kin and having a self-reported mental health history increased the risk of having MDD. Of the related information and support variables, having satisfactory support from family, support from a person to help navigate the post-death formalities, and satisfactory information about the death were associated with a decreased risk of probable PTSD, MDD, and PGD, respectively. The findings highlight the potential magnitude of the problem and the need for satisfactory information and support for bereaved families.