Cancer disclosure to friends: Survey on psychological distress and perceived social support provision.

OBJECTIVE: To determine the factors associated with the degree of distress experienced by patients with cancer before disclosing their cancer diagnosis to a friend and their perceptions of social support upon disclosure. METHODS: Adult patients with cancer participated in a cross-sectional Internet-based survey on their behaviour when disclosing their diagnosis to a selected friend, degree of distress before this disclosure and perceived social support upon disclosure. RESULTS: Of 473 eligible respondents, around half were middle-aged (40-59 years) and around half were men. Having a younger age (20-39 years), being a woman and delaying disclosure were factors associated with greater pre-disclosure distress. Most participants perceived receiving emotional support upon disclosure. Telling a close friend or a female friend and early disclosure timing were associated with perceived social support, although this varied by social support type. CONCLUSION: Younger patients and women may need more support in deciding to disclose their cancer diagnosis to friends. Selection of to whom to disclose this information and disclosure timing should be considered to achieve more desirable outcomes. In addition to selective disclosure-including planning and scheduling-communication skills may be required for effectively disclosing a cancer diagnosis and achieving favourable results following this disclosure.

Impact of gender and employment type on job loss among cancer survivors.

OBJECTIVE: To identify factors associated with cancer-related job loss following cancer diagnosis. METHODS: A multicentre cross-sectional survey was conducted among adult cancer survivors employed at the time of cancer diagnosis. Hierarchical multivariate logistic regression was used to examine the association of gender and employment type with job loss after cancer diagnosis and if the interaction between gender and employment type predicted job loss. RESULTS: Of 1618 patients recruited, 1483 returned questionnaires (91.7% response rate). Data from 708 patients were eligible for analyses. Approximately 21% of patients had lost their job within 10 years of diagnosis. Patients who had undergone chemotherapy were more likely to lose their jobs than those who had not (OR = 3.24, 95% CI 2.13-4.91). Women were more likely to lose their jobs than men (OR = 2.58, 95% CI 1.48-4.50). Temporary employees were more likely to lose their jobs than regular employees (OR = 2.62, 95% CI 1.72-3.99). After controlling for demographic and clinical characteristics, no interaction effects between gender and employment type were observed (P = 0.44). CONCLUSIONS: Women and temporary employees are more vulnerable to cancer-related job loss. Clinicians need greater awareness of the risk of patient job loss, and they need to assess patients' employment types and provide appropriate support to balance treatment schedules and work.

Knowledge, fatigue, and cognitive factors as predictors of lymphoedema risk-reduction behaviours in women with cancer.

OBJECTIVE: To identify social-cognitive factors predicting lymphoedema risk-reduction behaviours (hereafter, self-care) after discharge among patients in Japan with breast or gynaecological cancers, using the extended model of the theory of planned behaviour. METHODS: A cross-sectional questionnaire study was conducted in an oncology hospital. Items measured were (1) knowledge about self-care; (2) the Cancer Fatigue Scale; (3) social-cognitive factors in the theory of planned behaviour (attitudes, subjective norms, and perceived behavioural control); (4) self-care (limb hygiene, observation, articular movement, recommended risk-reduction behaviours in daily life, and diet and weight control); and (5) demographics. Of 202 respondents, 147 who had not been diagnosed with lymphoedema were eligible for statistical analysis (65.3% with gynaecological cancer, 34.7% with breast cancer). RESULTS: Structural equation modelling was used to examine a hypothesised model based on the theory of planned behaviour. The results revealed that a longer time since surgery, higher levels of fatigue, less knowledge, higher expected efficacy of self-care, and lower perceived behavioural control directly and significantly predicted less self-care behaviour. CONCLUSIONS: Besides education about self-care behaviour, levels of fatigue and perceived behavioural control should be taken into account to encourage female patients with cancer to perform self-care after discharge. Continuous psycho-educational programmes after discharge may help to facilitate self-care behaviours among long-term female cancer survivors.

Lay people's psychological reactions and helping intention after friends' cancer disclosure: An exploratory analysis using vignettes.

OBJECTIVES: Stigma, anticipated responses from others, and their relationships may affect patients' decision-making of cancer disclosure. However, little research has explored responses to cancer disclosure and the outcome from receivers' perspectives who had stereotypic views of cancer. This vignette study aimed to explore how lay people with negative attitude to cancer would react to the friend's cancer disclosure. METHODS: A cross-sectional survey study was conducted in community organisations. Of 161 recruited, 91 participants returned their questionnaires (56.5% of response rate). A total of 88 responses to open-ended questions were qualitatively analysed. RESULTS: Thematic analysis extracted four themes: 'Initial emotional reactions and the acceptance of the friend's cancer diagnosis'; 'Empathy, trust and helping intention'; 'Sharing informational and emotional support provision'; and 'Offering help, but waiting and seeing the friend's request.' As a result of comparison to these themes by the participants' familiarity of cancer patients in their real life, it was found that participants, who had not known any cancer patients, did not report the acceptance of the friends' cancer diagnosis and informational support provision to share. CONCLUSION: Intervention for lay people who felt difficulty with accepting friends' cancer diagnosis may be helpful to reduce the impact of friends' cancer diagnosis.

[Perceptions toward Employment and Support Needs in Medical Institutions and Workplace among AYA Cancer Survivors].

We conducted a cross-sectional questionnaire study to explore perceptions of employment, job-related help-seeking behaviors at the time of cancer diagnosis, illness disclosure at the workplace, and support needs for continuous employment among adolescent and young adult cancer survivors. The mean age at the time of cancer diagnosis was 27.8(range, 15-37) years. For survivors in this age category, employment is the foundation for economic development and contributions to society. Approximately half of the participants sought job-related help from medical staff and employment experts. Approximately 90%of the participants disclosed their illness to their workplace, and most were given consideration for their situation. To ensure continuous employment, the participants required environmental improvement at the workplace rather than consultation services at hospitals. This study suggests the need to further investigate when and where certain support is required and to consider ways to improve support at both hospitals and workplaces.

Job resignation after cancer diagnosis among working survivors in Japan: timing, reasons and change of information needs over time.

OBJECTIVE: Despite advances in work-related policies for cancer survivors, support systems for working survivors in healthcare settings in Japan remain underdeveloped. We aimed to reveal (i) the present situation of cancer survivors' job resignation, the timing of resignation, and reasons for resignation; (ii) healthcare providers' screening behaviors of cancer survivors' work-related difficulties and (iii) changes to cancer survivors' information/support needs over time since diagnosis. METHODS: We conducted an anonymous, cross-sectional survey using a convenience sample of re-visiting outpatients at three cancer centers in Japan in 2015. The questionnaire covered participants' demographic and clinical characteristics, change to job status, timing of and reasons for job resignation, screening experience regarding work-related difficulties by healthcare providers, and information/support needs at four distinct timings (at diagnosis, between diagnosis and initial treatment, between initial treatment and return-to-work, and after return-to-work). The results of 950 participants were eligible for statistical analysis. RESULTS: Only 23.5% of participants were screened about work-related issues by healthcare providers despite 21.3% participants reporting resigning at least once. Among participants who resigned, 40.2% decided to do so before initial treatment began. Regarding reasons for resignation, self-regulating and pessimistic reasons were ranked highly. Respondents' work-related information and support needs were observed to change over time. While treatment-related information (schedule and cost) was ranked highly at diagnosis, the need for more individually tailored information and support on work increased after treatment began. CONCLUSIONS: This study provides important basic data for developing effective support systems for working survivors of cancer in hospital settings.

Information-seeking, information sources and ongoing support needs after discharge to prevent cancer-related lymphoedema.

OBJECTIVES: To compare gynaecological and breast cancer patients in their information-seeking behaviours, usefulness of information sources and ongoing care needs after discharge to prevent the onset of lymphoedema. METHODS: We conducted a consecutive cross-sectional survey in an oncology hospital. Adult patients with stage I, II or III gynaecological or breast cancer who had undergone lymph node dissection and had not been diagnosed with lymphoedema were eligible for inclusion. The survey explored physical health status, knowledge of self-care, information-seeking behaviours, information sources and need for ongoing care from an oncology hospital and/or community health centre. RESULTS: Among 254 patients recruited, 202 responded (79.5% response rate). In total, 147 patients were eligible for statistical analysis. Irrespective of cancer type, the most commonly sought information was lymph drainage. Information on preventing weight gain was sought more often by breast cancer patients than gynaecological cancer patients. Regardless of cancer type, the most common information sources were nurses at an oncology hospital. Gynaecological cancer patients perceived nurses at the oncology hospital as useful for understanding risks, symptoms and prevention of lymphoedema. Irrespective of cancer type, ongoing need for help with lymphoedema prevention was reported both from the oncology hospital and the community centre. Limb symptoms, poor health status and poor knowledge affected the ongoing needs of gynaecological cancer patients at the oncology hospital, whereas poor health status affected ongoing needs in community health centres among both types of cancer patients. CONCLUSIONS: Both gynaecological and breast cancer patients reported ongoing care needs, but that details of information-seeking behaviours differed.

Fatigue, depression, maternal confidence, and maternal satisfaction during the first month postpartum: A comparison of Japanese mothers by age and parity.

The aim of the study was to assess fatigue, depressive symptoms, and maternal confidence or satisfaction among older primiparae during the first month postpartum. The number of older Japanese primiparae has rapidly increased. Older primiparae are believed to be at high risk for puerperal morbidity. A multicentre prospective cohort study design was used. Data were examined from 2854 Japanese women who participated in a 6-month prospective cohort study conducted between May 2012 and September 2013. The women were classified into 4 groups based on maternal age and parity. All participants completed the Postnatal Accumulated Fatigue Scale, Japanese Edinburgh Postnatal Depression Scale, Postpartum Maternal Confidence Scale, and Postpartum Maternal Satisfaction Scale. Primiparae in all age groups were more severely fatigued and had a higher risk of postpartum depression than multiparous mothers during the first month postpartum. Older primiparae had significantly lower scores on maternal confidence and maternal satisfaction than the other 3 groups at 1 month postpartum. These findings suggest that postpartum nursing should focus on promoting adequate sleep, providing emotional support, and fostering the process of maternal role adaptation among older Japanese primiparae, particularly during the first postpartum month.

Marriage and fertility in long-term survivors of childhood, adolescent and young adult (AYA) high-grade sarcoma.

PURPOSE: We investigated the marital status and the presence or absence of children in survivors of childhood, adolescent and young adult (AYA) high-grade sarcoma and examined the influence of these factors on the quality of life (QOL) of these survivors. METHODS: Thirty-eight survivors of childhood and AYA high-grade sarcoma (18 males, 20 females) participated in a questionnaire survey on marital status and presence or absence of children, as well as on the health-related QOL (HR-QOL), using the Short Form 36 Health Survey. Diagnoses among these survivors were osteosarcoma (28 participants), Ewing's sarcoma (4 participants), synovial sarcoma (4 participants) and others (2 participants). RESULTS: Of the 18 males who participated in the survey, eight (44.4 %) were married, of whom five (62.5 %) had children. Fifteen (75.0 %) of the 20 females were married, of whom 14 (93.3 %) had children. The proportions of surviving male patients who were married and who had children, respectively, were lower than those of surviving female patients. The proportion of ifosfamide-treated men with children was significantly lower than that of non-ifosfamide-treated men (p = 0.018). With respect to the relationship between marital status and HR-QOL, the scores for the vitality and mental health domains of the SF-36 of survivors who were married were significantly higher than those of unmarried survivors. CONCLUSIONS: The results of our questionnaire survey reveal that among the male survivors of high-grade sarcoma, the proportions of those who were married and of those with children were lower than those of female survivors, suggesting that strategies providing support for marriage and child-rearing may be necessary for the male survivor group. In the married group, mental QOL was high.

Cross-sectional and longitudinal validation of a 13-item fatigue scale among Japanese postpartum mothers.

This study examined the psychometric properties of a 13-item fatigue scale for postpartum mothers. Japanese mothers (n = 2026) from a cohort study completed questionnaires (e.g. fatigue scale, Japanese version of the Edinburgh Postnatal Depression Scale, demographics) during their hospital stay after childbirth (baseline) and at 1, 2, 4 and 6 months postpartum. Initial factor analysis of baseline data revealed that the fatigue scale had three factors or subscales (physical, emotional and cognitive). Within-group analysis across each measurement time revealed the same three-factor structure with acceptable fit. Between-group analysis also showed longitudinal factorial invariance across time. The fatigue subscales had acceptable divergent and convergent validities with the depression scale. The subscale scores differed significantly based on participant background. The Japanese Fatigue Scale is a concise and informative tool for assessing aspects of fatigue in clinical settings and in the community.

Factors affecting maternal confidence and satisfaction in older Japanese primiparae during postpartum hospital stay.

The purpose of this study was to identify factors affecting maternal confidence and satisfaction in older Japanese primiparae during their postpartum hospital stay. Participants were Japanese primiparae (age ≥ 35) who delivered live singleton infants (n = 479). Questionnaires completed 1 day before discharge from hospital included the Postpartum Maternal Confidence Scale and the Postpartum Maternal Satisfaction Scale. Data were analysed using stepwise multiple regression for maternal confidence and stepwise logistic regression for maternal satisfaction, after controlling for delivery mode. Maternal confidence was negatively affected by feeling overwhelmed by postpartum routines, needing a longer time for feeding, and a pregnancy with complications. Satisfaction with the birth experience and a longer rooming-in period were related to greater maternal satisfaction. Lack of prior experiences with caring for babies and lack of communication with their partner about parenting role were also associated with lower confidence and satisfaction. These findings provide an important framework for nurses to teach and counsel older first-time mothers.

Social disclosure about lymphoedema symptoms: A qualitative study among Japanese breast cancer survivors.

Disclosing illness-related problems is the first step in help-seeking. The aim of this qualitative study was to explore Japanese breast cancer (BC) survivors' decision-making about disclosure of lymphoedema symptoms to people in their social networks. A total of ten women participated in group discussions in Japan. A dual analytic approach, thematic analysis and conceptual analysis, was applied to the transcripts. Two themes (perceived responsibility of social roles within the family and unsupportive reactions to BC from others) affected participants' decision-making. Support programs for Japanese BC survivors who feel unable to disclose lymphoedema symptoms to family members are suggested.

Objective sleep of older primiparous Japanese women during the first 4 months postpartum: an actigraphic study.

This longitudinal study was designed to examine objective sleep parameters of older primiparous Japanese women during the first 4 months postpartum using actigraphy. The participants were 18 older primiparae (Mean (SD) = 37.06 (2.62) years, range 35-44 years) who gave birth to healthy neonates at one of three urban Japanese hospitals. Objective sleep quality was measured using actigraphy for 48 h at 1, 2 and 4 months postpartum. The Friedman test was used to test for differences in sleep parameters across time. Sleep duration (SMIN) increased significantly from 2 months (Mean (M) = 301.94 min) to 4 months (M = 372.78 min). Sleep efficiency (SE) increased significantly from 1 month (73.52%) to 2 (86.66%) and 4 months (89.05%). Waking after sleep onset (WASO) decreased significantly from 1 month (M = 114.64 min) to 2 (M = 40.18 min) and 4 months (M = 38.36 min) and long waking episodes (LWEP) significantly decreased from 1 month (4.67) to 2 (2.69) and 4 months (3.12). Persistent postpartum sleep problems can be a sign of postpartum depression as well as health problems among infants.

Comparing older and younger Japanese primiparae: fatigue, depression and biomarkers of stress.

This cohort study of primiparae was conducted to answer the following questions: Do older (≧ 35 years) and younger (20-29 years) Japanese primiparous mothers differ when comparing biomarkers of stress and measures of fatigue and depression? Are there changes in fatigue, depression and stress biomarkers when comparing older and younger mothers during the postpartum period? The Postnatal Accumulated Fatigue Scale and the Edinburgh Postnatal Depression Scale were administered in a time-series method four times: shortly after birth and monthly afterwards. Assays to measure biomarkers of stress, urinary 17-ketosteroids, urinary 17-hydroxycorticosteroids and salivary chromogranin-A, were collected shortly after delivery and at 1 month postpartum in both groups and a third time in older mothers at the 4th month. Statistical testing showed very little difference in fatigue, depression or stress biomarkers between older and younger mothers shortly after birth or 1 month later. Accumulated fatigue and depression scores of older mothers were highest 1 month after delivery. Additional cohort studies are required to characterize physical/psychological well-being of older Japanese primiparae.

Fragmented sleep and fatigue during postpartum hospitalization in older primiparous women.

The objective of this cross-sectional study was to investigate the associations among sleep characteristics, feeding variables, and fatigue among older Japanese primiparas (≥ 35 years old) during hospitalization after childbirth. A convenience sample of 16 participants who had given birth to a single newborn were recruited from maternity wards, and before discharge they completed a sleep assessment and questionnaires. Sleep characteristics were assessed using actigraphs. Diaries of daily activities recorded infant caregiving and subjective hours of sleep. The degree of fatigue was assessed using self-administered questionnaires. Although participants' sleep was found to be significantly fragmented by the average number of feeds per night, sleep loss in this sample was not severe compared with previous actigraph studies of young Japanese mothers. Lower percentages of sleep efficiency (percentage of sleep between going to bed and waking up) and parameters of fragmented sleep were significantly correlated with higher degrees of fatigue. Nurses and other healthcare providers should observe mothers' sleep and assess levels of fatigue. Assistance should be offered to mothers who are tired, so that they can have less fragmented sleep during the night.

Patient education, upper-limb symptom perception, and quality of life among Japanese breast cancer survivors.

PURPOSE: To examine the effects of perceptions of information received about upper-limb morbidity (ULM) and perceptions of upper-limb symptoms (ULS) on quality of life (QoL) among Japanese breast cancer (BC) survivors. METHODS: A total of 166 Japanese BC survivors with postoperative ULS participated in a cross-sectional study. Participants were divided into three groups by time since breast surgery (short-term, middle-term, and long-term). Survivors' perceptions of the information, their perceptions of ULS, and QoL were assessed using questionnaires, including the WHO QoL-BREF Japanese version. Factors associated with QoL were analyzed by multiple regression stepwise analyses. RESULTS: In the short-term group, perceptions of insufficient information about managing ULM were associated with poor physical (P = 0.002), psychological (P = 0.003), and environmental health (P = 0.015). Positive perceptions of ULS were associated with good physical (P = 0.011), psychological (P = 0.024), and social health (P = 0.028). Symptom disclosure was associated with poor physical (P = 0.036) and psychological health (P = 0.041) in the long-term group. No significant association was found between QoL and perceptions of information or symptoms in the middle-term group. CONCLUSIONS: Facilitating positive perceptions of information and ULS may improve QoL, especially in short-term survivors. Healthcare providers should develop patient education programs that take the perceptions of BC survivors into account.

International Survey of Psychosocial Care for Cancer Survivors in Low-/Middle- and High-Income Countries: Current Practices, Barriers, and Facilitators to Care.

PURPOSE: The number of cancer survivors living with and beyond cancer treatment is rising globally. It is fundamental to understand the extent and type of psychosocial care services offered worldwide. We evaluated models of cancer survivorship care, psychosocial care practices in the post-treatment survivorship phase, and barriers/facilitators to delivery of psychosocial care services, including in low- and middle-income countries (LMICs). METHODS: The International Psycho-Oncology Society (IPOS) Survivorship Special Interest Group led a cross-sectional online survey between March and November 2022. Health care professionals and researchers in psycho-oncology were invited through the IPOS global membership, social media, and snowballing. The survey was administered to individuals but included questions related to practices in their country at a national level. RESULTS: Two hundred eighty-three respondents from 37 countries participated (40% from LMICs), with a median of 12 years of experience (IQR, 6-20) in the psycho-oncology field. Participants reported that the most common elements of routine survivorship care were related to the prevention/management of recurrences/new cancers (74%), physical late effects (59%), and chronic medical conditions (53%), whereas surveillance/management of psychosocial late effects (27%) and psychosocial/supportive care (25%) were least common. Service availability was more commonly reported in high-income countries (HICs) than LMICs related to reproductive health (29% v 17%), genetic counseling/support (40% v 20%), and identifying/managing distress (39% v 26%) and pain (66% v 48%). Key barriers included providers focusing on treatment not survivorship (57%), medical not psychosocial care (60%), and a lack of allied health providers to deliver psychosocial care (59%). CONCLUSION: The psychosocial needs of people living with cancer are not adequately available and/or provided in post-treatment survivorship even in HICs, because of barriers at patient, provider, and system levels.

Positive changes in Japanese breast cancer survivors: a qualitative study.

Despite traumatic experiences of cancer, survivors often report positive changes. Since little research has been conducted into such changes among Japanese breast cancer survivors, our knowledge is minimal. This qualitative study aimed to explore the nature of the positive changes among this group. A thematic analysis suggested that participants had experienced seven types of positive change: Attitudinal changes towards life, strengthening trust in family and friends, increased appreciation of life, self-development, future perspectives, education for friends, and efforts towards bodily change. Awareness of vulnerability in life, received social support and social comparisons appear to trigger some of the positive changes.

A mixed-method systematic review of unmet care and support needs among Japanese cancer survivors.

PURPOSE: To synthesize published studies regarding Japanese cancer survivors' needs/unmet needs of care/support, change of unmet needs over time, and preferred care/support providers. METHODS: A mixed-method systematic review was conducted. MEDLINE, PsycINFO, CINAHL, and Ichu-shi were searched from inception to May 2022. Quantitative and qualitative studies were separately analyzed using narrative synthesis and meta-ethnography. Each finding was synthesized using a line of argument. RESULTS: Twenty-four studies (13 quantitative and 11 qualitative studies) were included. Six quantitative studies reported unmet needs in survivors of adolescent and young adult (n=1) and adulthood (n=5) cancer. No longitudinal studies regarding changes in unmet needs were identified. One study reported that adults preferred care/support providers. The quantitative studies identified more help in physical (48.2-51.0%, n=2) and psychological issues (17.4-78.8%, n=5), information (27.9-58.0%, n=3), and healthcare services (25.3-67.1%, n=2) among adults. The qualitative studies emphasized more tailor-made information about life events for young cancer survivors. More empathic and trustworthy interactions with surrounding people, including healthcare professionals, were demanded, regardless of age. A line of argument illustrated that cancer survivors had insufficient resources for activities and empowerment to face life with cancer at all phases. CONCLUSIONS: Japanese cancer survivors' unmet needs are diverse. More information and resources for psychological care/support and local healthcare services post-treatment are needed, which may hinder the optimal transition to survivorship. IMPLICATIONS FOR CANCER SURVIVORS: The synthesized evidence should be utilized to implement a comprehensive care/support system in practice and educate people surrounding cancer survivors, regardless of age.

Development of the Psycho-social Discomfort Scale (PsDS): investigation of psychometric properties among Japanese breast cancer survivors.

OBJECTIVE: To develop a new scale to assess psycho-social discomfort in breast cancer (BC) survivors in Japanese society and to investigate its psychometric properties. METHOD: A total of 248 Japanese BC survivors completed both the Psycho-social Discomfort Scale (PsDS) and WHO Quality of Life BREF Japanese version (WHO QoL-Jp). A principal component factor analysis (with promax rotation) was performed, and internal consistency was examined using Cronbach's alpha. Divergent and convergent validities and criterion validity were examined using the Spearman's R. RESULTS: The factor analysis extracted three factors: 'internalised stigma (IS)', 'social disclosure of BC (SD)', and 'psychological resources to live with BC (PR)'. The factors were moderately correlated. The scale had good internal consistency (alpha = 0.80). All sub-scales were inversely correlated with all the domains in the WHO QoL-Jp (r = -0.09 to -0.47). BC stage was significantly correlated with the SD sub-scale, and type of surgery was significantly correlated with the IS sub-scale. CONCLUSIONS: The PsDS has 25 items. It measures psycho-social discomfort that Japanese BC survivors experienced or were experiencing in their community. It has a simple factor structure, relatively good internal consistency, and a satisfactory divergent validity.