Spouses and partners of cancer patients have an increased risk of psychological difficulties, such as depression, anxiety, impaired self-esteem, somatic complaints, and difficulties experienced within the couple     . Psychological distress experienced by spouses continues after the death of the patient. One predictor of higher risk for developing complicated grief is the loss of a spouse    , and caregivers of patients with cancer have a higher level of depressive symptoms after bereavement if they were the patient’s spouse  . The assessment of spousal needs is a critical step for determining appropriate support and providing high-quality care to reduce psychological distress between spouses.
Some countries have tools to assess support needs for partners and caregivers of patients with cancer, such as the Supportive Care Needs Survey-Partners and Caregivers (SCNS-P & C) in Australia  , a comprehensive needs assessment tool for cancer caregivers (CNAT-C) in Korea  , and the Cancer Survivors’ Partners Unmet Needs measure (CaSPUN)  . However, a tool for assessing the needs of spouses of patients with cancer is not available in Japan. Nevertheless, it is difficult to use other instruments from other countries after translation, because social support needs reflect factors in the social environment, such as perceptions and emotions related to cancer, healthcare systems, social welfare policies, and work systems. Thus, instead of translating other instruments from other countries, we decided to develop an original tool to assess social support needs for spouses in Japan to provide specific care for individual spousal needs.
One assessment of social issues of Japanese patients with cancer showed that 51.1% of them had experienced some type of social issues within the past five years  . Another survey demonstrated that the prevalence of unmet supportive care needs among Japanese cancer survivors was high in medical-psychological and financial domains and relatively low in physical and sexual domains  . However, caregiver needs were not highly correlated with patient needs, implying that caregivers have their own needs, and that a separate assessment of caregiver need is needed  . Therefore, we aimed to describe social support needs of spouses of patients with cancer based on the Social Problem Checklist (SPC) for Japanese patients with cancer   and explore factors associated with social support needs of spouses of patients with cancer.
We conducted an online survey of 559 spouses of cancer patients between November 10th and 29th 2016. The eligibility criteria were as follows: recruited by registered agents of an online survey company (Macromill Inc., Tokyo, Japan), age > 20 years, spouses of patients diagnosed with cancer within the past five years, experienced difficulties regarding disease and treatment of the patient at home, in the workplace, and the neighborhood, able to understand details of this study, able to respond to an online survey, and uninformed about eligibility criteria (to exclude bias before the online survey) (Figure 1).
Macromill designed the online questionnaire as “the disease survey”. Check boxes and radio buttons were used for each item to answer.
Agents at Macromill were informed about the study purpose and recruited eligible participants online. Agents were paid with points in return for participating in this investigation. They could earn points if they answered all questions, and then they could exchange points for cash, gift certificates, merchandise, or points of business partners.
This study was approved by the ethics committee of the Tokyo Medical and Dental University (M2015-581). The return of completed forms was considered consent. It was explained that participants could stop answering the questionnaire when they did not want to answer.
Participants completed the online self-reporting questionnaires, which included 23 items of spousal demographic data and 146 items regarding social issues and social support needs of spouses of patients with cancer.
2.3. Measured Items
2.3.1. Demographic and Medical Information
The demographic data including sex, age, province, children, annual household income, personal income, spousal occupation, site of cancer, previous treatment, treatment status, recurrence/metastasis, performance status, types of previous and present medical facilities, housemate, and housemate other than spouse.
2.3.2. Tool to Assess Social Support Needs of Spouses of Patients with Cancer (73 Items)
We developed a tool with which to assess social issues of spouses of Japanese patients with cancer (82 items) based on the SPC for Japanese patients with cancer (60 items)   because measures of social issues and support needs developed in other countries were not appropriate for Japanese spouses of patients with cancer.
We confirmed the content validity of the original assessment tool of social issues (82 items) in an initial multidisciplinary meeting that included a psychiatrist, a medical social worker, two clinical psychologists, and a certified palliative care nurse in June 2015. Thereafter, we constructed an original scale of social issues and social support needs for the spouses of Japanese patients with cancer (164 items).
Figure 1. Flow diagram of the process to select participants.
Factor analysis based on Promax rotation using the maximum likelihood method was applied to the scale of social issues and social support needs for the spouses, and 146 items were extracted.
The content validity of this original assessment tool of social issues and social support needs for the spouses of patients with cancer (146 items) was addressed at a second multidisciplinary meeting including a psychiatrist and two clinical psychologists in February 2017. The present article focuses on the 73 social support needs items of these 146 items (Figure 2).
The participants were asked if they had needed any supports regarding each item during the past month to rate the level of severity on a 6-point Likert scale, which ranged from 1 (very much) to 2 (quite a lot), 3 (a little), 4 (solved by myself), 5 (extremely satisfied), or 6 (not applicable).
Figure 2. Flow diagram of the process to make the assessment tool.
After a multidisciplinary meeting including a psychiatrist, two clinical psychologists, and a medical social worker to evaluate the assessment tool of social support needs of the spouses of cancer patients, each response category was scored as follows: 4 (very much),3 (quite a lot), 2 (a little), 1 (solved by myself, extremely satisfied), or 0 (not applicable). A rating ≥ 3 was regarded as a serious need for social support.
2.4. Statistical Analysis
The demographic and medical information of the participants is summarized using descriptive statistics.
We modified the 60-item SPC for Japanese patients with cancer   and developed an original scale of 164 items regarding social issues and social support needs of their spouses. Factor analysis based on Promax rotation using the maximum likelihood method extracted 146 items regarding social issues and the social support needs of the spouses of patients with cancer.
Differences among three age groups, three performance status groups, and three groups with previous treatment were assessed using ANOVA.
Differences among sex, cancer site, previous treatment, presence of recurrence/metastasis, type of previous and present medical facilities, and housemate other than spouse were evaluated using T-tests. All data were statistically analyzed using SPSS version 23.0 (IBM, Armonk, NY, USA).
3.1. Demographic and Medical Information of Participants
We distributed online questionnaires to 699 agents of Macromill and analyzed 559 that were returned (valid response rate, 80.0%). Table 1 shows the characteristics and medical information of the participants.
Table 1. Demographic and clinical characteristics of participants (n = 559).
The spouses were divided into young (age 20s and 30s; n = 69, 12.3%), middle-aged (age 40s and 50s; n = 275, 49.2%), and elderly (age ≥ 60s; n = 215, 38.5%) groups. The primary sites of cancer comprised breast (n = 139, 24.9%), colon (n = 95, 17.0%), stomach (n = 62; 11.1%), lung (n = 59, 10.6%), and malignant lymphoma (n = 34, 6.1%). The types of therapy were surgery (n = 455, 81.4%) and chemotherapy or hormonal therapy (n = 233, 41.7%). The cancer had been cured and treatment had been completed in 274 (49.0%) patients, and 233 (41.7%) were still undergoing treatment.
3.2. Factors Related to Social Support Needs
3.2.1. Factors Related to Social Support Needs Regarding Disease and Treatment of Patients
Factor analysis identified three factors among 54 items (Table 2).
Former items 1, 24, 36, 46 and 47 did not load < 0.1 about the differences of factor loading between factors and were excluded (Appendix A).
A psychiatrist and a clinical psychologist at a multidisciplinary meeting discussed the items that were included in different factors between the assessment tools of social issues and of social support needs and excluded former item 59 (the number before exclusion) that did not differ highly in factor loading between factors.
3.2.2. Factors Related to Social Support Needs of Spouses
Factor analysis identified two factors among 19 items (Table 3).
Former item 22 did not load < 0.1 about the differences of factor loading between factors and was excluded (Appendix B).
A psychiatrist and a clinical psychologist at a multidisciplinary meeting discussed the items that were included in different factors between the assessment tools of social issues and of social support needs and excluded former items 16 and 18 (numbers before exclusion) that did not significantly differ between factors.
3.3. Factors Associated with Social Support Needs of Spouses of Patients with Cancer
Table 4 shows that scores were higher across all scales and factors of social support needs in younger than in middle-aged and elderly spouses (p < 0.05).
Among the most prevalent of the primary cancer sites, namely lung cancer (10.6%), stomach cancer (11.1%), colon cancer (17.0%) and breast cancer (24.9%), only lung cancer significantly differed in terms of social support needs regarding “patient disease and treatment” and “spouse difficulties” (both p < 0.05).
Table 5 shows that Factor 1, “medical condition and cure” and 2, “daily life and social support” were significantly higher (p < 0.05 for both) in the measure of “patient disease and treatment” for patients with than without lung cancer. Factor 1, “family psychological issues and social support”, was also significantly
Table 2. Factors of social support needs regarding disease and treatment of patients.
Factor extraction method: maximum likelihood method; Factor rotation method: Promax; Number of rotation: 4; Factor loadings > 0.25; **p < 0.01.
Table 3. Factors of social support needs for spouses.
Factor extraction method: maximum likelihood method; Factor rotation method: Promax; Number of rotation: 3; Factor loadings > 0.25; **p < 0.01.
higher (p < 0.05) in the measure of “spouse difficulties” for patients with than without lung cancer.
All scales and factors of social support needs were significantly higher for “under treatment” than “cancer cured: treatment completed” (p < 0.05) and for “cancer not cured: treatment stopped” than “cancer cured: treatment completed” (p < 0.05).
Table 6 shows that scores for all factors regarding “patient disease and treatment” were significantly higher for patients with than without recurrence/metastasis (p < 0.05) and “spouse difficulties” (p < 0.05).
Table 4. Comparisons of mean age and social support needs (ANOVA).
*p < 0.05. Y, young; M, middle-aged; E, elderly. Ages: Y, M and E: 21 - 39, 40 - 59, 60 - 87 years, respectively.
Table 5. Comparisons of mean cancer sites and social support needs (T test).
*p < 0.05.
Table 6. Comparisons of mean recurrence/metastasis and social support needs (T test).
*p < 0.05
“PS1” and “PS 2 - 4” scored higher in all scales and factors of social support needs than “PS0” (p < 0.05 for both).
The present study described the social support needs of spouses of patients with cancer. This allowed the first systematic and comprehensive needs assessment of these individuals in Japan. Factor analysis identified three underlying domains in “social support needs regarding patient disease and treatment” (“medical condition and cure”, “daily life and social support”, and “intimacy and employment”) and two underlying domains in “social support needs regarding spouse difficulties” (“family psychological issues and social support” and “intimacy, employment and society”). These domains reflect the common needs generally reported in the literature regarding cancer caregivers    . One advantage of the present study is that the tool for assessing social support needs focused on the spouses of patients with cancer and identified needs for support with “patient disease and treatment” and “spouse difficulties”.
The ANOVA findings showed that the young group scored significantly higher across all scales and factors of social support needs than the middle-aged and elderly groups. In the Adolescent and Young Adult (AYA) population, cancer is the leading cause of death due to illness with the lowest mortality rate, as well as in children, and AYA patients with cancer are growing independently, starting life within the community, and are reaching reproductive age  ; they have physical changes to become adults and unique psychological issues that are distinct from those of pediatric and older adult patients  . Intimacy is harmed more frequently among survivors of breast cancer aged < 45 years than among those aged 46 - 54 and > 55 years. Psychological problems are more prevalent among younger women who survive breast cancer  . AYA cancer patients experienced many specific sequelae after cancer diagnosis and treatment, such as loss of fertility   , hair loss, and other physical changes and fatigue   , as well as difficulties with social relationships, employment, educational attainment, and financial burden   . Regarding mental health, AYA cancer patients had an increased prevalence of anxiety, depression, and distress than healthy peers and the general public   . Additionally, AYA cancer survivors were more likely to have a poorer quality of life than persons of the same age in the general population and older cancer survivors  . In young patients, these subjective factors of severity of illness and emotional distress affected posttraumatic stress symptoms and subjective experience of her spouse more   . In particular, younger age is a factor associated with high psychological distress and a low quality of life for spouses and partners  . The present findings were consistent with those of a previous study of AYA cancer caregivers and indicated that medical staff should consider the social support needs of young spouses more carefully.
Only lung cancer significantly differed among primary cancer sites in patients. According to the website of the Cancer Information Service of National Cancer Center in Japan  , lung cancer had the highest number of fatalities among males and females during 2017. Lung cancer is associated with increased symptomatic distress and unmet needs compared with other types of cancer, with the most common symptoms being fatigue, cough, and dyspnea  . Therefore, lung cancer also impacts anxiety and depression among spouses   . This result is consistent with previous finding that the most prevalent unmet needs among caregivers of patients with advanced lung cancer were related to information, healthcare service, and daily living  , and that unmet needs were more prevalent among caregivers of lung cancer survivors at 6 and 24 months after diagnosis  . The present study did not find significant differences regarding “intimacy and employment” in disease and treatment of patient and “intimacy, employment and society” in spousal difficulties. Being a young spousal caregiver is a factor of economic burden for the spouse of a patient with lung cancer  . In this study, most participants were more than middle-aged, and, therefore, issues of intimacy and employment might have been less important.
It was found that the social support needs were significantly higher among spouses of patients in the “under treatment” than in the “cancer cured: treatment completed” groups and among those of patients in “cancer not cured: treatment stopped” than in “cancer cured: treatment completed” groups. Patients undergoing surgery, chemotherapy, radiation therapy, or chemoradiotherapy experience significant cancer treatment-related fatigue that begins during treatment and decreases following treatment  , and patients’ fatigue might also affect spousal distress and social support needs. For example, the spouses of patients with incurable cancer in the palliative care phase have a higher frequency of depression symptoms  , and spouses faced with the “cancer not cured: treatment stopped” situation also have many social support needs. Our results are consistent with previous findings and indicate that the spouses of patients with cancer have obvious social support needs, especially when patients undergo treatment or are incurable and treatment has been stopped. Appropriate social support should be provided in such situations.
We also found higher social support needs among spouses of patients with than without recurrence or metastasis, with PS1 than PS0, and with PS 2 to 4 than PS0. Patients who have cancer with poorer performance status might have difficulty coping with the disease and consequently might experience more psychological distress  . Therefore, their spouses might also have high levels of need when their patients have low performance status. Indeed, recent studies have suggested that spouses and partners experience physical and psychological distress over the burden of patient care, anxiety, depression, and posttraumatic stress symptoms, and they have to deal with their own lifestyles (such as childcare, missing work, financial burden) when patients are in the terminal phase or developing metastasis and recurrence      . Furthermore, caregiver depression, burden, and missing work increase more during the terminal period than during the palliative period  . This finding suggests that medical staff should assess the social support needs of spouses in these situations to provide adequate support as the functional status of the patient declines.
In conclusion, the age of the spouse, cancer site in the patient, recurrence/metastasis, and performance status are important factors related to the social support needs of spouses. Medical staff should assess the situations of spouses on an individual basis and plan strategies to help reduce unmet needs. Communicating openly with spouses and consulting with health-care professionals could be helpful to fulfill specific social support needs regarding disease and treatment of patients and specific ones of spouses. Providing concrete medical information would be effective to solve needs of disease and treatment of patients. Introducing psychosocial services and self-help groups would be also useful to solve being socially isolated and having no one with a similar experience to talk to. Delivering psychoeducation on relaxation techniques and communication skills with patient, medical staff, people in workplace may improve spouse coping skills to solve psychosocial needs by themselves   . Couple-based interventions may also beneficial for spouses to improve relational satisfaction and communication with patients   .
The most important study limitation is the representativeness of the sample. The participants might have been affected by sampling bias because they were recruited by agents online and, therefore, targeted only persons who were familiar with the internet and specific agents. An online survey that does not reflect whether everything recorded about the patients was correct was used. Distribution of cancer sites was slightly different from that of the general cancer population in Japan. Social support needs might have been underestimated because most participants had good performance status. The second limitation is that our original tool has not been standardized, although its content validity was confirmed in a multidisciplinary meeting.
Despite the limitations, this is the first study to examine the social support needs and their associated factors among spouses of patients with cancer in Japan.
In future research, clinical data about spouses of cancer patients in the hospital setting should be collected. We therefore plan to test the applicability of the assessment tool in hospitals and to explore the social support needs for spouses of patients with cancer in Japan.
The authors would like to sincerely thank the participants, Macromill, and the laboratory staff at Liaison Psychiatry and Palliative Medicine at Tokyo Medical and Dental University.
This study was financially supported by a donation from a professor emeritus of the Tokyo Institute of Technology, Taizou Iijima and his wife (No. 1713).