Mariko Shiozaki

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.

Public Awareness, Knowledge of Availability, and Readiness for Cancer Palliative Care Services: A Population-Based Survey across Four Regions in Japan

BACKGROUNDnThis study explores the distribution of public awareness, knowledge of availability, and readiness for palliative care services, and the perceived reliability of information resources as part of a nationwide palliative care implementation intervention in Japan (Outreach Palliative Care Trial of Integrated Regional Model [OPTIM]).nnnMETHODSnA cross-sectional anonymous questionnaire survey was conducted, and 3984 responses were used in the final analysis.nnnRESULTSnA total of 63.1% of respondents admitted having no knowledge about palliative care, while 0.5% of respondents were using palliative care services. Respondents who knew about palliative care services, yet did not know about their availability were 18.6% of all respondents. Respondents who had cancer-related experiences were more likely to be aware of palliative care compared to the general population and availability of palliative care services. Only awareness of palliative care was significantly associated with two typical images, while cancer-related experiences were not.nnnCONCLUSIONnFindings show that the public awareness of palliative care services and their availability is insufficient, and cancer-related experiences affect awareness of cancer palliative care but not directly related to typical images for palliative care such as care for patients close to death.

Experience with Prognostic Disclosure of Families of Japanese Patients with Cancer

CONTEXTnPrognosis is difficult to discuss with patients who have advanced cancer and their families.nnnOBJECTIVESnThis study aimed to explore the experiences of families of patients with cancer in Japan in receiving prognostic disclosure, explore family perception of the way the prognosis was communicated, and investigate relevant factors of family-perceived need for improvement.nnnMETHODSnA multicenter questionnaire survey was conducted with 666 bereaved family members of patients with cancer who were admitted to palliative care units in Japan.nnnRESULTSnIn total, 86.3% of the families received prognostic disclosure. The overall evaluation revealed that 60.1% of the participants felt that the method of prognostic disclosure needed some, considerable, or much improvement. The parameter with the highest value explaining the necessity for improvement was the family perception that the amount of information provided by the physician was insufficient (beta=0.39, P<0.001). Furthermore, the family perception that they had lost hope and that health care providers failed to facilitate preparation for the patients death had significant direct effects on the necessity for improvement (beta=0.21, P<0.001; and beta=0.18, P<0.001, respectively). The feelings for the necessity for improvement also were affected significantly by seven communication strategies (i.e., not saying I can do nothing for the patient any longer, pacing explanation with the state of the patients and familys preparation, saying We will respect the patients wishes, making an effort to understand the familys distress, being knowledgeable about the most advanced treatments, assuring continuing responsibility as the physician for medical care, and respecting the familys values).nnnCONCLUSIONnThis model suggests that strategies for care providers to improve family perception about prognostic disclosure should include 1) providing as much prognostic information as families want; 2) supporting families hopes by keeping up with up-to-date treatments and by assuring the continuing responsibility for medical care; 3) facilitating the preparation for the patients death by providing information in consideration of the familys preparations and values; 4) stressing what they can do instead of saying that nothing can be done for the patient; and 5) assuring the family that they will respect the patients wishes.

Problem-Solving Therapy for Psychological Distress in Japanese Early-stage Breast Cancer Patients

OBJECTIVEnThe current report provides the result of a Phase II clinical trial regarding the effectiveness and feasibility of problem-solving therapy for psychological distress experienced by Japanese early-stage breast cancer patients.nnnMETHODSnParticipants were 36 post-surgery Japanese breast cancer patients in a university hospital located in Osaka Prefecture, Japan. After screening for psychological distress using the Distress and Impact Thermometer and the Hospital Anxiety and Depression Scale, highly distressed patients were exposed to 5 weekly sessions of the problem-solving therapy program.nnnRESULTSnNineteen patients completed the intervention and follow-up. There was a significant difference between the pre-intervention and the 3-month follow-up in the total Hospital Anxiety and Depression Scale score (P = 0.02), and the mean change score from the pre-intervention to the follow-up was 6.05 (SD = 1.94). The intervention had a large effect size (d = 0.82). There were also significant changes in worry, self-efficacy and quality of life measures.nnnCONCLUSIONSnThe findings of our study suggest that the problem-solving therapy program has potential to be effective for alleviating psychological distress experienced by Japanese early-stage breast cancer patients. The true effectiveness of the program should be confirmed by a future randomized control trial.

Practices and evaluations of prognostic disclosure for Japanese cancer patients and their families from the family's point of view.

OBJECTIVEnThe primary end points of this analysis were to explore 1) the practices of prognostic disclosure for patients with cancer and their family members in Japan, 2) the person who decided on the degree of prognosis communication, and 3) family evaluations of the type of prognostic disclosure.nnnMETHODnSemistructured face-to-face interviews were conducted with 60 bereaved family members of patients with cancer who were admitted to palliative care units in Japan.nnnRESULTSnTwenty-five percent of patients and 75% of family members were informed of the predicted survival time of the patient. Thirty-eight percent of family members answered that they themselves decided on to what degree to communicate the prognosis to patients and 83% of them chose not to disclose to patients their prognosis or incurability. In the overall evaluation of prognosis communication, 30% of the participants said that they regretted or felt doubtful about the degree of prognostic disclosure to patients, whereas 37% said that they were satisfied with the degree of prognostic disclosure and 5% said that they had made a compromise. Both in the “prognostic disclosure” group and the “no disclosure” group, there were family members who said that they regretted or felt doubtful (27% and 31%, respectively) and family members who said that they were satisfied with the degree of disclosure (27% and 44%, respectively).nnnSIGNIFICANCE OF RESULTSnIn conclusion, family members assume the predominant role as the decision-making source regarding prognosis disclosure to patients, and they often even prevent prognostic disclosure to patients. From the perspective of family members, any one type of disclosure is not necessarily the most acceptable choice. Future surveys should explore the reasons why family members agree or disagree with prognostic disclosures to patients and factors correlated with family evaluations.

Pros and cons of prognostic disclosure to Japanese cancer patients and their families from the family's point of view.

BACKGROUNDnThe primary goals of this analysis were to explore the pros and cons of prognostic disclosure to patients and their families from the bereaved familys point of view.nnnMETHODSnSemistructured interviews were conducted with 60 bereaved family members of patients with cancer in Japan.nnnRESULTSnThere were eight categories of influence related to the disclosure of prognosis to the family, including pros (e.g., Enabling mental preparedness for the patients death) and cons (e.g., Being distressed by acknowledging the patients prognosis); and seven categories of influence of not disclosing the prognosis to family, including pros (e.g., Being able to maintain hope) and cons (e.g., Being prevented from providing adequate care for the patient). There were also nine categories of influence related to the disclosure of prognosis to patients (e.g., Enabling various discussions regarding death with the patient), and eight categories of influence related to not disclosing the prognosis to patients (e.g., Maintaining the patients hope).nnnCONCLUSIONSnAlthough prognostic disclosure to family members can contribute to psychological distress and hopelessness, at the same time, it has the potential to prepare them for the future both emotionally and practically, and also to make the time until the patients death as meaningful as possible. It is useful for physicians to introduce pros and cons of prognostic disclosure to family members at the time of decision making, to understand the family members psychological state, and to provide support considering pros and cons whether or not they disclosed prognosis.

Negative support of significant others affects psychological adjustment in breast cancer patients

Significant others play an important role in providing support in patients’ lives, but some types of support negatively affect the patients. This study was conducted in early-stage breast cancer patients to examine the structure of support, which was provided by their significant others and assessed negatively by the patients, and to identify negative support relating to the psychological adjustment of these patients. Thus, we first conducted interviews among 28 breast cancer patients to identify these support items assessed as negative; next, we conducted a questionnaire survey using the resulting items in 109 postoperative patients who had early-stage breast cancer. We performed exploratory and confirmatory factor analyses and obtained a valid second-order factor structure, including superordinate factors (excessive engagement, avoidance of problems and underestimation) and subordinate factors (overprotection, encouragement and management). Among these factors, the avoidance of problems was the only factor to be negatively associated with psychological adjustment of the patients, suggesting that these patients receive problem-avoiding support. The results of our study suggest that such problem-avoiding support from significant others can be counter-productive and potentially worsen the psychological adjustment of breast cancer patients.

Talking About Death With Terminally-Ill Cancer Patients: What Contributes to the Regret of Bereaved Family Members?

CONTEXTnTalking about death is an important issue for terminally-ill cancer patients and their families. Little is known about how often and which bereaved families regret not having talked about death with their deceased loved one.nnnOBJECTIVESnTo explore the prevalence of a regret of not having talked about death with a deceased loved one among bereaved family members of adult cancer patients, and to systematically explore factors contributing to their regret.nnnMETHODSnWe conducted a nationwide survey of 999 bereaved families of cancer patients admitted to 133 inpatient hospices in Japan and surveyed families regret on talking about death. Exploratory analyses identified the underlying structures of process, option, and outcome subscales of factors contributing to regret.nnnRESULTSnAmong 678 bereaved families (response rate 68%), 224 (33%) regretted not having talked about death sufficiently, whereas 40 (5.9%) conversely regretted having talked about death. Three process factors (prognostic disclosure to patient [βxa0=xa00.082, Pxa0=xa00.039], upsetting of patient and family [βxa0=xa00.127, Pxa0=xa00.001], and familys sense of uncertainty about when to act based on terminal awareness [βxa0=xa00.141, Pxa0=xa00.000]) and an outcome factor (having achieved a good death [βxa0=xa0-0.152, Pxa0=xa00.000]) contributed to the regret of talking insufficiently.nnnCONCLUSIONnA third of bereaved families of adult cancer patients regretted not having talked about death sufficiently. Clinicians may minimize this regret by facilitating a shared understanding of the disease and prognosis, advising families explicitly when to talk based on terminal awareness, providing continuous emotional support, and validating their decision on talking about death.

Age and Gender Differences in Relationships Among Emotion Regulation, Mood, and Mental Health

Objective: We investigated the effects of age on mood and mental health-mediated emotion regulation, such as cognitive reappraisal and expressive suppression, and examined whether these relationships differ according to gender. Method: We recruited 936 Japanese participants. They comprised six age groups ranging from 20 to 70 years old, with 156 participants in each age group and equal numbers of men and women. Results: Structural equation model analysis showed that older participants were more likely to use cognitive reappraisal, further enhancing positive mood and reducing negative mood, whereas, age did not affect expressive suppression. Moreover, expressive suppression had a smaller impact on mood than cognitive reappraisal. A multi-group analysis showed significant gender differences. In men, cognitive reappraisal increased with age and influenced mood more positively than in women. Discussion: Our findings indicated gender differences in aging effects on emotion regulation. We discussed about these results from the cognitive process, motivation to emotion regulation, and cultural differences.

Verbal communication of families with cancer patients at end of life: A questionnaire survey with bereaved family members

To clarify the verbal communication of feelings between families and patients in Japanese palliative care units from the perspective of bereaved family members by examining (1) proportions of families and patients verbalization of six feelings (gratitude, love, seeking forgiveness, giving forgiveness, wishes after death, and continuing bonds), (2) recognition of receiving these feelings through verbalization from the familys perspective, and (3) the specific attitudes of family members that influence their verbalizations.