Posttraumatic Growth as a Process Beginning Before Bereavement: New Perspectives on Theory Development.

Calhoun and Tedeschi's growth model focuses on cognitive processing after bereavement but it does not show the change in life narrative from beforehand. Our qualitative study aimed to clarify bereaved family growth and revealed new perspectives on posttraumatic growth (PTG), including that the PTG process involves a pre-bereavement experience and is not limited to positive psychological changes.Based on the two new perspectives, a discussion of PTG theory reveals that bereaved families' PTG can only be accurately captured if the pre-loss experience is included; thus, Calhoun and Tedeschi's growth model, which only captures the post-loss process, is insufficient. Additionally, positive psychological changes are not the only type of growth. When considering growth, one must focus on the process, including the experience of the person realizing that it is "okay to be who they are."

Growth Experience Bereaved of a Spouse by Cancer: Relying on Merleau-Ponty's Reorganization of the Body Schemes.

The grief experienced by bereaved families can lead to positive changes, and its relevance to the emerging concept of posttraumatic growth has been explored. However, studies on survivors bereaved of a spouse by cancer are scarce; consequently, the nature of growth remains poorly understood. This study aimed to explore the growth experiences of survivors bereaved of a spouse by cancer. Based on Merleau-Ponty's theory of the body, we phenomenologically analyzed narratives/qualitative data collected through interviews of 21 survivors bereaved of a spouse by cancer. The assessment of the growth of survivors bereaved of a spouse by cancer began before the bereavement, with the questioning of habits with the living spouse because of illness and prognosis announcement and/or bereavement, reaffirming the connection with the spouse, realizing that it provides emotional support, and becoming accustomed to who they are now in the new environment.

Effect size estimates of risk factors for post-intensive care syndrome-family: A systematic review and meta-analysis.

BACKGROUND: Families of patients admitted to ICUs often experience post-intensive care syndrome-family, and previous studies have reported several possible risk factors. However, to date, no meta-analyses have been conducted on the numerous risk factors associated with the development of post-intensive care syndrome-family and how strongly these factors are in association with post-intensive care syndrome-family. OBJECTIVES: To identify risk factors for post-intensive care syndrome-family and determine the effect size of individual risk factors. METHODS: This systematic review used MEDLINE, CINAHL, PsycINFO, and EMBASE databases to search all studies through December 1, 2021, that reported risk factors for anxiety, depression, PTSD, and prolonged grief disorder in the families of adult patients in ICUs. A meta-analysis was conducted to calculate an overall estimate for key risk factors, and odds ratio and 95% confidence intervals were used as summary statistics using the random-effects model. RESULTS: Of 2964 identified studies, 17 were included. Nine factors for anxiety, eight for depression, and three for PTSD were assessed using results from 13 studies. The risk factor with the largest effect size was "history of mental illness," which, along with "female sex," was a significant risk factor common to anxiety, depression, and PTSD. "Poor communication with ICU staff," "severely ill patient," and "patients' spouse" were common risk factors for anxiety and depression. CONCLUSIONS: We identified several risk factors related to patient and family demographic characteristics. Further research is required to identify and validate modifiable risk factors for the psychosocial experiences of families of ICU patients.

Clinical practice guidelines for the care of psychologically distressed bereaved families who have lost members to physical illness including cancer.

The Japanese Psycho-Oncology Society and the Japanese Association of Supportive Care in Cancer developed evidence-based clinical practice guidelines for the care of psychologically distressed bereaved families who have lost members to physical illness including cancer. The guideline development group formulated two clinical questions. A systematic literature review was conducted. The level of evidence and the strength of the recommendations were graded and recommendation statements validated using the modified Delphi method. The recommendations were as follows: non-pharmacological interventions were indicated for serious psychological distress (depression and grief); antidepressants were indicated for depression; however, psychotropic medications including antidepressants were not recommended for 'complicated' grief. These guidelines will facilitate the provision of appropriate care to distressed bereaved family members and highlight areas where further research is needed.

Care needs level in long-term care insurance system and family caregivers' self-perceived time-dependent burden in patients with home palliative care for cancer: a cross-sectional study.

PURPOSE: Although home care improves patients' quality of life (QOL), several studies have suggested that home care lowers the QOL of family caregivers and decreases their mortality. To alleviate the deleterious impact of home care on caregivers, the major burdens on caregivers and the clinical characteristics of the caregivers vulnerable to the major burden needs to be clarified. METHOD: A survey questionnaire was distributed to 710 family caregivers of patients with cancer in Japan, and 342 valid responses were obtained (valid response rate: 48.2%). The Burden Index of Caregivers was used to identify the major burden on caregivers. To assess the associations of the patients' care needs level and other clinically relevant factors with the major burden, a multivariable-adjusted logistic regression model was used. RESULTS: The time-dependent burden was identified as a major burden. An adjusted model showed a nonlinear association between the care needs level and the time-dependent burden, in which the caregivers of the patients who required moderate care needs level had the highest time-dependent burden [adjusted odds ratio of none, mild, moderate, and severe care needs levels: 0.50 (95% confidence interval 0.07-2.12), 1.08 (0.43-2.57), 1.87 (1.01-3.52), and 1.00 (reference), respectively]. Additionally, older patients and younger caregivers were significantly associated with a time-dependent burden. CONCLUSION: The time-dependent burden was highest in caregivers at the moderate care needs level and younger caregivers. An imbalance between the demand and supply of care services may be improved by considering the clinical characteristics of both patients and caregivers.

The Association of Family Functioning With Possible Major Depressive Disorders and Complicated Grief Among Bereaved Family Members of Patients With Cancer: Results From the J-HOPE4 Study, a Nationwide Cross-Sectional Follow-Up Survey in Japan.

CONTEXT: Family functioning is a modifiable factor associated with major depressive disorder (MDD) and complicated grief (CG) among the bereaved families of patients with advanced cancer; however, the evidence regarding this association is limited. OBJECTIVES: We aimed to explore the association of family functioning with possible MDD and CG among the bereaved families of patients with advanced cancer who died in palliative care units. METHODS: This study is a part of the J-HOPE4 study, a nationwide cross-sectional multi-purpose questionnaire survey conducted in 2018. We recruited potential participants from 164 inpatient palliative care units in Japan and assessed family functioning with the Family Relations Index (FRI). Family functioning was classified into three categories (Well-functioning: FRI ≥ 10, Intermediate: FRI = 8〜9, Dysfunctioning ≤ 7). The Patient Health Questionnaire 9 (PHQ-9) and the Brief Grief Questionnaire (BGQ) were used to assess depression (PHQ-9 score ≥ 10) and complicated grief (BGQ score ≥ 8), respectively. Multinomial logistic regression analysis was performed with possible MDD and CG and factors the family functioning. RESULTS: A total of 615 questionnaires were returned, of which 54.0 % (n = 510) age of questionnaires could be used. Although family functioning was associated with possible MDD (21.1% in Dysfunctional; 9.3% in Well-functional, P = 0.016), it was not associated with possible CG (14.8% in Dysfunctional; 9.9% in Well-functional, P = 0.929). Possible MDD and CG were significantly associated with deteriorated family relationships (OR:8.29; P = 0.004 and OR:34.00; P < 0.001, respectively), and consulting with health care providers about their concerns (OR:0.23; P = 0.003 and OR:0.23; P = 0.003, respectively). CONCLUSIONS: Family function was affected by post-bereavement possible MDD and not by CG. Our findings suggest that health care providers can identify risk factors for MDD among bereaved, dysfunctional family members.

Effects of financial status on major depressive disorder and complicated grief among bereaved family members of patients with cancer.

OBJECTIVE: To examine current financial status, changes before and after bereavement, and their effects on possible major depressive disorder (MDD) and complicated grief (CG) among bereaved family members of patients with cancer. METHODS: We conducted a nationwide cross-sectional questionnaire survey on 787 bereaved family members of patients with cancer in 71 palliative care institutions in Japan from May to July 2016. The survey assessed perceived level of concern regarding current financial status and whether it changed after bereavement. We also collected information on demographic factors and assessed the possible MDD and CG using the Patient Health Questionnaire-9 and Brief Grief Questionnaire, respectively. We then conducted bivariate analysis to examine the relationship between these factors and financial status. RESULTS: A total of 491 (62%) questionnaires were returned. The majority of the participants (n = 382, 78%) reported having no or mild concerns about their livelihood, whereas 19% (n = 95) had moderate to severe concerns. Regarding the change in financial status after bereavement, 7% (n = 35) reported improvement, 28% (n = 131) reported worsening, and 65% (n = 308) reported no change. The prevalences of possible MDD and CG were 22% (n = 108) and 9% (n = 41), respectively, and were significantly lower among participants with less concern regarding their livelihood and whose financial status had not changed after bereavement (both p < 0.05). CONCLUSIONS: About one-fifth of the bereaved family members reported financial difficulties to some extent; these were significantly associated with MDD and CG. These findings provide evidence of the need for psychosocial support including financial consultation for bereaved family members.

Comparison of two measures for Complicated Grief: Brief Grief Questionnaire (BGQ) and Inventory of Complicated Grief (ICG).

OBJECTIVE: No prior studies have used a single sample of bereaved families of cancer patients to compare multiple scales for assessing Complicated Grief. Here, we compare the two measures. METHODS: We sent a questionnaire to the bereaved families of cancer patients who had died at 71 palliative care units nationwide. RESULTS: The analysis included 3173 returned questionnaires. Prevalence of Complicated Grief was 7.8% by Brief Grief Questionnaire (with a cutoff score of 8) and 15.5% for Inventory of Complicated Grief (with a cutoff score of 26). The Spearman's correlation coefficient between the Brief Grief Questionnaire and the Inventory of Complicated Grief was 0.79, and a ceiling effect was seen for the distribution of the Brief Grief Questionnaire scores. Although 6.4% of respondents scored both 8 or higher on the Brief Grief Questionnaire and 26 or higher on the Inventory of Complicated Grief, only 1.4% scored both 8 or higher on the Brief Grief Questionnaire and <26 on the Inventory of Complicated Grief. In contrast, 9.1% scored <8 on the Brief Grief Questionnaire but 26 or higher on the Inventory of Complicated Grief. CONCLUSION: The prevalence of Complicated Grief was estimated to be higher by the Inventory of Complicated Grief than by the Brief Grief Questionnaire in this sample. Patients with severe Complicated Grief might be difficult to discriminate their intensity of grief by the Brief Grief Questionnaire. Once the diagnostic criteria of Complicated Grief are established, further research, such as optimization of cutoff points and calculations of sensitivity and specificity, will be necessary.

Exploring the components of the quality of death in Japanese emergency departments: A qualitative study.

BACKGROUND: The need to care for patients who die in the emergency department is increasing in Japan, and emergency nurses are required to provide end-of-life care to ensure that patients experience a good death. However, the components of the quality of death and what constitutes a good death for patients dying in the emergency department are unclear. AIM: This study aimed to explore the components of the quality of death for patients who die in emergency departments of Japanese hospitals. METHODS: This study employed a qualitative design. An inductive content analysis was conducted based on semi-structured interviews with 26 participants, which included 15 emergency nurses, five emergency physicians, and six bereaved families. RESULTS: Seven components of quality of death were identified: (1) transition to the end-of-life phase after receiving the best treatment, (2) dying without suffering, (3) having the patient's wishes respected, (4) having a loved one nearby, (5) maintaining human dignity, (6) having no change in appearance, and (7) not making the family feel guilty. CONCLUSION: These components suggested that emergency nurses should: support patients' receipt of the best treatment and foster their smooth transition to the end-of-life phase at the appropriate time, ensure that the patients in the end-of-life phase spend time with their loved ones immediately before their death, enable the maintenance of human dignity and patient identity of end-of-life patients, and make sure that the families of end-of-life patients do not feel guilt.

Insomnia and changes in alcohol consumption: Relation between possible complicated grief and depression among bereaved family caregivers.

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.

The current status of bereavement follow-up in Japanese emergency departments: A cross-sectional nationwide survey.

INTRODUCTION: The aim of this study was to investigate the current status of bereavement follow-up in Japanese emergency departments. METHODS: This study employed a cross-sectional design and conducted a nationwide survey of all emergency departments in Japan. Self-reported questionnaires were sent to the nurse leaders of each emergency department. RESULTS: Of 289 nurse leaders approached, 145 (50.2%) responded. Only 17.9% emergency departments provided bereavement follow-up strategies, and the most frequent strategy was referral to a specialist for psychological treatment. Most nurse leaders perceived that bereavement follow-up is necessary, and the greatest need of the bereaved as perceived by the nurse leaders was explanation of the patient's death. However, 60% of the nurse leaders perceived bereavement follow-up to be necessary but difficult, and the major challenges in bereavement follow-up were lack of time, knowledge, and skill. CONCLUSION: In contemporary Japan, the prevalence of bereavement follow-up strategies offered by emergency departments was low, and although most nurse leaders perceived follow-up as necessary, it could not be provided because of limitations in human resources and staff training.

Measuring the Benefits of Respite Care use by Children with Disabilities and Their Families.

PURPOSE: The benefits of respite care in reducing the burden of caregivers of children with disabilities are well known; however, few studies have effectively quantified such benefits. The aim of the present study was to develop and validate a measure for evaluating the benefit of respite care provided to family caregivers of children with disabilities. DESIGN AND METHODS: This was a cross-sectional study. We distributed a survey questionnaire to 465 family caregivers between March and April 2017. Participants were asked to respond to items regarding benefits of respite care for themselves and their children. RESULTS: Data in relation to four domains (Child Development, Sense of Peace and Life Fulfillment among Caregivers, Mental Health Support for the Caregiver, and Expansion of Perspectives and Future Vision) were extracted to assess the benefits of using respite care. The full-scale Cronbach's α coefficient was 0.89 and ranged between 0.73 and 0.88 for each individual domain. CONCLUSIONS: The newly developed measure for assessing the benefits of respite care for family caregivers of children with disabilities was highly reliable and valid. PRACTICE IMPLICATIONS: This objective tool would allow healthcare practitioners to review the quality of respite care they provide and subsequently help them identify ways to improve.

Investigating associations between pain and complicated grief symptoms in bereaved Japanese older adults.

Objectives: About 10% of those who lose a loved one in hospice or palliative care settings will experience a mental health condition characterized by severe, prolonged grief responses. Criteria for this condition have evolved; we refer to this condition as Complicated Grief (CG) because it is one of the more common names. While there are some indications of associations between CG and poor physical health, explorations of the association between CG and pain is limited. The main objective of this study was to explore whether pain levels are higher in those with CG than those without, using a large population-based samples of Japanese older adults.Method: The study analyzed data from the Japan HOspice and Palliative care Evaluation (J-HOPE) study, a cross sectional study conducted in 2008 that examined the experiences and outcomes among adults throughout Japan who had lost a loved one within a palliative department or hospice setting, via self-report survey. We examined a subsample sample of 324 individuals aged 50 and above who completed a measure of CG.Results: Family members with high pain group had statistically significantly higher CG symptoms than those with low pain group (M = 66.95 vs. M = 52.05), an association which remained when controlling for demographic and loss-related factors.Conclusion: We found preliminary evidence of an association between CG symptoms and pain, which should be explored in additional samples. Should this finding be replicated, the mechanism of this association could be explored and treatment could potentially address both CG and pain.

Factors associated with possible complicated grief and major depressive disorders.

OBJECTIVE: Complicated grief (CG) is considered a distinctive symptom from other bereavement-related mental impairments such as major depressive disorder (MDD). CG and MDD may appear independently or co-morbidly; however, the factors associated with each situation are unclear. METHODS: We conducted a nationwide cross-sectional questionnaire survey involving bereaved family members of cancer patients in 175 institutions. The following items were included in the questionnaires to assess the prevalence of CG and MDD, and the following associated factors: demographic characteristics; bereaved family depression (Patient Health Questionnaire-9) and grief status (Brief Grief Questionnaire); structure and process of care (Care Evaluation Scale); overall care satisfaction; and achievement of a good death (Good Death Inventory). RESULTS: A total of 9123 questionnaires were returned. The prevalence of CG and MDD was 14% and 17%, respectively. Additionally, 58% of the possible CG participants showed co-morbid symptoms. Common factors that showed significant association with either independent or co-morbid symptoms of CG and MDD were pre-existing mental impairment; belief in the survival of the soul after physical death; unpreparedness for the death; poor physical or psychological health status; and the belief that the deceased felt themselves as a burden to others (all P < 0.05). The duration of bereavement did not remain significant after multivariate analysis. CONCLUSIONS: While there were many common factors associated with both CG and MDD independently, few participants exhibited associations to both CG and MDD. Therefore, CG and MDD can be considered as distinctive symptoms, which frequently appear co-morbidly.

Effectiveness of professional training in bereavement care: Survey of Japanese pediatricians supporting families who have lost a child.

BACKGROUND: The aim of this study was to assess the effectiveness of professional training in bereavement care. METHOD: We mailed a questionnaire to 554 Japanese pediatricians. It asked about demographic characteristics, personal support experiences, professional training, psychological distress, recognition of high risk after a child's death, and eight items relating to awareness in bereavement care. We divided the subjects into two groups based on the presence or absence of professional training and compared them on the basis of each item (χ(2) test), and conducted logistic regression analysis. RESULTS: Of the 239 respondents, 193 (80.8%) had performed bereavement care. The final number included in the analysis was 175, after excluding responses with missing data. A total of 46 respondents (26.3%) had attended bereavement care training. The subjects who had had training were more likely to recognize those at high risk for poor psychological recovery, have information about support groups, have a desire to study bereavement care, and understand the necessity of cooperation with mental health specialists. CONCLUSION: Many pediatricians had personally provided support for the bereaved. On logistic analysis, it was considered that four factors (recognition of high risk for poor recovery, information about support, desire to study, and cooperation with professionals) were significantly associated with the professional training. There were no significant differences, however, in psychological distress, helplessness, and fatigue. Training programs related to stress management must be improved for pediatricians who feel high levels of psychological distress.

Changes experienced by and the future values of bereaved family members determined using narratives from bereavement life review therapy.

OBJECTIVES: The goals of this study were to investigate the changes experienced by bereaved family members in Japan and to determine what activities they would value in the future based on narratives from a bereavement life review, which is a type of psychotherapy used to treat depression and promote spiritual well-being. METHODS: The participants were 20 bereaved Japanese family members who underwent two sessions of bereavement life review over a period of two weeks. RESULTS: Using qualitative analysis, we identified four areas of changes ("learning from the deceased's death and self-growth," "healing process," "relating with others," "relating with society," and "performing new family roles") and five categories of valued activities ("continuing grief work," "living with a philosophy," "attaining life roles," "keeping good human relationships," and "enjoying life"). SIGNIFICANCE OF RESULTS: "Learning from the deceased's death and self-growth" and "relating with others" are common in Japan and Western countries, whereas "relating with society," "healing process," and "performing new family roles" are more characteristic of Japan. The strength of bonding with the deceased may influence the values of bereaved family members. We concluded that bereavement life review therapy can contribute positively to their grief work.

Universality of bereavement life review for spirituality and depression in bereaved families.

The present study aimed to investigate the effects of the Bereavement Life Review on depression and spiritual well-being of bereaved families in a setting that does not specialize in palliative care. The participants were 20 bereaved family members who underwent the Bereavement Life Review over 2 sessions in 2 weeks. Beck Depression Inventory Second Edition scores significantly decreased from 14.4 ± 9.2 to 11.6 ± 7.4 (t = 2.15, P = .045) and Functional Assessment Chronic Illness Therapy-Spiritual scores increased from 24.3 ± 10.1 to 25.9 ± 11 (t = -1.0, P = .341) from pre- to postintervention. These results show that the Bereavement Life Review can decrease depression and improve spiritual well-being of bereaved families after the death of a family member in a setting without specialized palliative care. The results also suggest the universality of this therapy.

Why are bereaved family members dissatisfied with specialised inpatient palliative care service? A nationwide qualitative study.

BACKGROUND: In order to improve the quality of palliative care, we can learn from bereaved families who were dissatisfied with the care they received. The primary aim of this study was to explore why bereaved families were dissatisfied with specialized inpatient palliative care. METHODS: This qualitative study formed part of a nationwide questionnaire survey administered to 1225 bereaved family members of cancer patients who died in certified palliative care units in Japan. The participants were 22 consecutive family members who reported a greater need for improvement in care. Data were analysed by the content analysis. RESULTS: The reasons that the bereaved families listed are classified into 27 categories and seven themes: (1) lack of perceived support for maintaining hope; (2) lack of perceived respect of individuality, especially in attitudes toward death; (3) perceived poor quality of care, especially psychological care, not being treated with dignity and inadequate explanation from physicians; (4) inadequate staffing and equipment, especially physician availability; (5) unavailability of timely administration; (6) lack of accurate information about palliative care units; and (7) family's practical and economic burden. CONCLUSIONS: This study identified the multiple sources of dissatisfaction with specialized inpatient palliative care for bereaved families. These findings could be useful in developing a more desirable system of specialised inpatient palliative care.

Measuring the quality of structure and process in end-of-life care from the bereaved family perspective.

Measurement of the structure/process of care is the first step in improving end-of-life care. The primary aim of this study was to psychometrically validate an instrument for directly measuring the bereaved family's perception of the necessity for improvement in structural/procedural aspects of palliative care. Different sets of questionnaires were sent to 800 and 425 families who lost family members at one of 70 certified palliative care units in Japan in the development and validation phases, respectively, and 281 families of the latter group in the follow-up phase. The participants were requested to fill out a newly-developed Care Evaluation Scale (CES), along with outcome measures (the perceived experience and satisfaction levels) and potential covariates (the degree of expectation, the Center for Epidemiologic Studies Depression Scale, and the Social Desirability Scale). We obtained 485, 310, and 202 responses in the development, validation, and follow-up phases (response rates: 64%, 75%, and 72%, respectively). The 28-item CES had an overall Cronbach's coefficient alpha of 0.98; the intra-class correlation coefficient in the test-retest examination was 0.57. A confirmatory factor analysis revealed 10 subscales: physical care (by physicians, by nurses), psycho-existential care, help with decision-making (for patients, for family), environment, family burden, cost, availability, and coordination/consistency. The CES subscales were only moderately correlated with the perceived-experience and satisfaction levels of corresponding areas (r=0.36-0.52 and 0.39-0.60, respectively). The CES score was not significantly associated with the degree of expectation, the changes of depression, or the Social Desirability Scale. The CES is a useful tool to measure the bereaved family's perception of the necessity for improvement in structural/procedural aspects of palliative care. The advantages of the CES are: 1) it specifically evaluates the structure and process of care, 2) it directly identifies needed improvements, 3) it is not affected by the degree of expectation, depression, or social desirability, and 4) it has satisfactory psychometric properties.