Search results for: Chinese family caregivers

Authors: Longtao He, Han Wu

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Summary: As the need for elder care increases in China due to a growing aging population and, in particular, rising cancer rates, it becomes increasingly important to also support family caregivers, who are often the main source of care. We used a qualitative meta-synthesis to systematically evaluate and integrate the caregiving experiences of family caregivers of elderly cancer patients as revealed by articles published in Chinese journals. Findings: Nine studies are included in the final analysis. The caregiver experiences they describe are synthesized into three primary themes: care needs, care burden, and care gains, with numerous secondary themes. Besides the findings that seem to align with other findings across cultures, we have highlighted three main discoveries from the synthesis that may be quite specific to the Chinese context: 1. more sub-themes related to specific caregiving skills caregivers of cancer patients; 2. a call for health professionals to improve their communication skills with family caregivers; 3. the important role of filial piety. Applications: Our findings can be used to help health social workers and relevant policymakers in China support family caregivers by identifying the education and training required for caregivers, ways to make the most of potential care gains, and ways to ease care burdens.

Keywords: cancer, Chinese family caregivers, caregiving skills, care burden, care gains, health social work

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Authors: Szu Mei Hsiao

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This study explores the spiritual needs of inpatients with advanced cancer and their family caregivers in one southern regional teaching hospital in Taiwan and elucidates the differences and similarities of spiritual needs between them. Little research reports the different phases of spiritual needs and the potential impact of Chinese cultural values on the spiritual needs. Qualitative inquiry was used. Twenty-one patients with advanced cancer and twenty-two family caregivers were recruited. During hospitalization, all participants identified spiritual needs both the palliative phase and the dying phase: (a) the need to foster faith/confidence and hope for medicine and/or God; (b) to understand the meaning and values of life; (c) to experience more reciprocal human love and forgiveness; and (d) to obey God’s/Heaven will. Furthermore, the differences of spiritual needs between patients with advanced cancer and their family caregivers are as follows: (a) family caregivers emphasized the need to inform relatives and say goodbye in order to die peacefully; (b) patients highlighted a need to maintain a certain physical appearance in order to preserve their dignity; nurture one’s willpower; learn about the experiences of cancer survivors; and identify one’s own life experience for understanding the meaning and values of life. Moreover, the dissimilarity of spiritual needs is that the patients pointed out the need to understand God’s will during the palliative treatment phase. However, the family caregivers identified the need to forgive each other, and inform relatives and say goodbye to patients in the dying phase. This research has shown that the needs of meaning/values of life and facing death peacefully are different between two groups. Health professionals will be encouraged to detect and to develop individualized care strategies to meet spiritual needs.

Keywords: advanced cancer, Chinese culture, family caregivers, qualitative research, spiritual needs

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Authors: Emily J. Winnall

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It is understood that China has the largest population of people living with dementia in the world; however, little is known about this culturally diverse community, specifically the Chinese Communities, which has been poorly represented in past British research Literature. Further research is needed to gain a greater understanding of the support needs of caregivers caring for a relative living with dementia from the Chinese background. Dementia care and caregivers in Chinese communities are less investigated. The study is a case study of two Chinese community centers and one housing support service. Semi-structured one-to-one interviews and a pilot questionnaire were used as the methods for the study. A toolkit will also be created as a document that provides guidance and signposting to health and social care services for Chinese communities. The findings identified three main themes. Caregivers do not receive any formal support from the UK health and social services, and they felt they would have benefited from getting advice on what support they could access. Furthermore, the data also identified that Chinese organisations do not have the knowledge of dementia, to be able to support those living with dementia and their families. Also, people living with dementia and their families rarely present to Chinese organisations and UK health and social care services, meaning they are not receiving the support they are entitled to or need. Additionally, the community center would like to see workshops/courses around dementia for people from Chinese backgrounds. The study concludes that people from Chinese cultural backgrounds do not have sufficient access to support from UK health and social care services. More information needs to be published that will benefit Chinese communities.

Keywords: Chinese, Chinese organisations, Dementia, family caregivers, social care

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Authors: Liu Yi-Hui, Chiu Fan-Yun, Lin Yu Fang, Jhang Yu Cih, He You Jing

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The demand for care support has been rising with the aging of society and the advancement of medical science and technology. To meet rising demand, the Taiwanese government promoted the “Long Term Care Ten-Year Plan 2.0” in 2017. However, this policy and its related services failed to be fully implemented because of the ignorance of the public, and their lack of desire, fear, or discomfort in using them, which is a major obstacle to the promotion of long-term care services. Given the above context, this research objectives included the following: (1) to understand the current situation and predicament of family caregivers; (2) to reveal the actual use and assistance of government’s long-term care resources for family caregivers; and (3) to explore the support and impact of social capital on family caregivers. A semi-structured in-depth interview with five family caregivers to understand long-term care networks and social capital for family caregivers.

Keywords: family caregivers, long-term care, social capital

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Authors: Chen Jun

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This study investigates the impact of family involvement, a pivotal factor shaping the management structure of family firms, on the firm’s innovation outputs. The independent variable focuses on the percentage number of family members serving as directors, supervisors and senior management. Our hypothesis suggests that family involvement tends to make management more conservative, thereby increasing the likelihood of impeding innovation investments and resulting in adverse effects on innovation output. Our findings reveal that Chinese family firms with high family involvement exhibit poorer innovation outputs compared to those with lower family involvement. Subsample analyses indicate that this negative influence of family involvement on innovation output is strengthened as the firm faces higher industry competition and a low marketization context. The findings of our paper contribute to the literature on family involvement by empirically illustrating how family involvement hinders innovation efforts and performance in Chinese family firms.

Keywords: family firm, family involvement, firm innovation, Chinese family firm

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Authors: Yeaji Seok, Myung Kyung Lee

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Background: Even if patients survive after a stroke, stroke patients may experience disability in mobility, sensation, cognition, and speech and language. Stroke patients require rehabilitation for functional recovery and daily life for a considerable time. During rehabilitation, the role of caregivers is important. However, the stroke patients’ quality of life may deteriorate due to family caregivers’ non-preparedness and increased role burden. Purpose: To investigate the prediction of caregivers' preparedness and role burden on stroke patients’ quality of life. Methods: The target population was stroke patients who were hospitalized for rehabilitation and their family care providers. A total of 153 patient-family caregiver dyads were recruited from June to August 2021. Data were collected from self-reported questionnaires and analyzed using descriptive statistics, t-tests, chi-squared test, one-way analysis of variance, Pearson’s correlation coefficients, and multiple regression with SPSS statistics 28 programs. Results: Family caregivers’ preparedness affected stroke patients’ mobility (β = .20, p < 0.05) and character (β = -.084, p < 0.05) and production activities (β = -.197, p < 0.05) in quality of life. The role burden of family caregivers affected language skills (β = .310, p<0.05), visual functions (β=-.357, p < 0.05), thinking skills (β = 0.443, p = 0.05), mood conditions (β = 0.565, p < 0.001), family roles (β = -0.361, p < 0.001), and social roles (β = -0.304, p < 0.001), while the caregivers’ burden of performing self-protection negatively affected patients’ social roles (β = .180, p=.048). In addition, caregivers’ role burden of personal life sacrifice affected patients’ mobility (β = .311, p < 0.05), self-care (β =.232, p < 0.05) and energy (β = .239, p < 0.05). Conclusion: This study indicated that family caregivers' preparedness and role burden affected stroke patients’ quality of life. The results of this study suggested that intervention to improve family caregivers’ preparedness and to reduce role burden should be required for quality of life in stroke patients.

Keywords: quality of life, preparedness, role burden, caregivers, stroke

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Authors: Tulika Bhattacharyya, Suhita Chopra Chatterjee

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Family caregivers are vital in providing physical and emotional care to the aged. Providing care to aged involves physical as well as psycho-socio-economic challenges, compels the caregiver to fit in manifold roles, feel overburdened; which in turn requires them to change their priorities in life. The study conducted on family caregivers of the hospitalized elderly explores caregiver’s burden using Zarit Burden Scale (ZBS). The data has been collected from two randomly selected Multispecialty Hospitals in Kolkata (India), after obtaining ethical clearance from the Institutional Review Board of both the hospitals. The predictors of burden were also assessed using interview schedules. Among fifty-seven caregivers who participated in the study, caregiver’s burden was identified among thirty respondents with twenty-six having mild to moderate burden and four having moderate to severe burden. Majority of the caregivers were found to be female, reflecting the gendered nature of caregiving. Family caregivers spent more than six hours per day on caregiving, which severely disturbed their work-life including loss of job. The study revealed that the caregivers’ marital status, family structure, academic qualification, occupation and time spent on caregiving are related to family caregivers’ burden. The burden of care giving was accentuated by poor access to information, counseling, and lack of supportive services. The paper concludes by indicating the need for greater state interventions for caregivers.

Keywords: caregivers burden, family caregiving, hospitalized elderly, elderly in Kolkata, India, Zarit Burden Scale

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Authors: Szu-Mei Hsiao

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Many nurses have concerns about the difficulties of providing spiritual care for ethnic-Chinese patients and family members within their cultural context. This is due to a lack of knowledge and training. Most family caregivers are female. There has been little research exploring the potential impact of Chinese cultural values on the spiritual distress of couple dyadic participants in Taiwan. This study explores the spiritual issues of Taiwanese women coping with their husband’s advanced cancer during palliative care to death. Qualitative multiple case studies were used. Data was collected through participant observation and in-depth face-to-face interviews. Transcribed interview data was analyzed by using qualitative content analysis. Three couples were recruited from a community-based rural hospital in Taiwan where the husbands were hospitalized in a medical ward. Four spiritual distress themes emerged from the analysis: (1) A personal conflict in trying to come to terms with love and forgiveness; the inability to forgive their husband’s mistakes; and, lack of their family’s love and support. (2) A feeling of hopelessness due to advanced cancer, such as a feeling of disappointment in their destiny and karma, including expressing doubt on survival. (3) A feeling of uncertainty in facing death peacefully, such as fear of facing the unknown world; and, (4) A feeling of doubt causing them to question the meaning and values in their lives. This research has shown that caregivers needed family support, friends, social welfare, and the help of their religion to meet their spiritual needs in coping within the final stages of life and death. The findings of this study could assist health professionals to detect the spiritual distress of ethnic-Chinese patients and caregivers in the context of their cultural or religious background as early as possible.

Keywords: advanced cancer, Buddhism, Confucianism, Taoism, qualitative research, spiritual distress

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Authors: Bih-O Lee, Hsiu-Wan Hsieh, Hsiu-Chen Liu, Mer Yu Pan

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Background: Illness perceptions are developed when people face health-threatening situations. Previous research suggests that understanding discrepancies between illness perceptions of patients and caregivers may need to improve quality of health care. Objective: This study examined the differences between illness perceptions of injured patients and those of their caregivers. Methods: Comparative study design was used. The study setting was the surgical wards of a teaching hospital in Taiwan. Participants were 127 pairs of injured patients and their caregivers. The participants completed socio-demographic data and completed the Chinese Illness Perception Questionnaire Revised-Trauma, which comprises eight subscales. Clinical data of the injured patients was obtained from medical records. Results: This study found that injured patients were more pessimistic than their caregivers about the injury. There were significant differences between patients and caregivers insofar as patients perceived more physical symptoms, scored higher in terms of reasons for their injury, had more negative emotions and experienced more consequences than caregivers. Elderly caregivers and caregivers for patients who were over 65, severely injured and admitted to an ICU perceived more negative perceptions about the injury. Conclusions: This study indicated that patients and caregivers had negative illness representations several months after injury although the intensity of their perceptions was different. The interventions should highlight the need to assist patients and caregivers after injury.

Keywords: illness representations, injury, caregivers, comparative study

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Authors: Rosy Chaudhary, Pushpa Parajuli

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Background and Objectives: Informational support to family members has a significant potential for reducing this distress related to hospitalization of their patient into the critical care unit, enabling them to cope better and support the patient. The objective of the study is to assess family members’ perception of informational support, anxiety, satisfaction with care and to reveal the association with selected socio-demographic variables and to investigate the correlation between informational support, anxiety and satisfaction with care. Materials and Methods: A descriptive cross-sectional study was conducted in 39 family caregivers of patients admitted in critical care unit of BPKIHS(B.P. Koirala Institute of Health Sciences). Consecutive sampling technique was used wherein data was collected over duration of one month using interview schedule. Descriptive and inferential statistics were used. Results: The mean age of the respondents was 34.97 ± 10.64 and two third (66.70%) were male. Mean score for informational support was 25.72(SD = 5.66; theoretical range of 10 - 40). Mean anxiety was 10.41 (SD = 5.02; theoretical range of 7 - 21). Mean score for satisfaction with care was 40.77 (SD = 6.77; theoretical range of 14 - 64). A moderate positive correlation was found between informational support and satisfaction with care (r = 0.551, p < .001) and a moderate negative correlation was found between anxiety and satisfaction with care (r = -0.590; p = 0.000). No relationship was noted between informational support and anxiety. Conclusion: The informational support and satisfaction of the family caregivers with the care provided to their patients was satisfactory. More than three fourth of the family caregivers had anxiety; the factors associated being educational status of the caregivers, the family income and duration of visiting hours. There was positive correlation between informational support and satisfaction with care provided justifying the need for comprehensive information to the family caregivers by the health personnel. There was negative correlation between anxiety and satisfaction with care.

Keywords: anxiety, caregivers, critical care unit, informational support, family

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Authors: Cecilia Fagerstrom, Solve Elmstahl, Lena S. Wranker

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The conditions of increased morbidity in an aging population cause the need for family care to become more common at an advanced age. The role of family caregivers may well last for a long time but may also change over time, from being caregivers to being non-caregivers or vice versa. Although demands associated with family caring change as individuals enter into, engage with, and exit from this role, the evidence regarding the impact of family caregiving transitions on the health of older carers is still limited. This study comprised individuals (n=2294, 60+years) from the southern part of Sweden included in the project Swedish National study of Aging and Care. Caregiving transitions are discussed in the categories: enter, exit, and continuing during a six-year period. Individuals who exited caregiving during the time were older than those who continued or entered into the role of caregiving. At the six-year follow-up, caregivers who were continuing or had exited caregiving were more often worried about their own health compared to baseline. Resembling findings were not found in those who entered caregiving. Family caregiving transitions of exiting, entering or continuing had no effect on the individuals’ functional, physical and mental health expect for participants who entered in caregiving. For them, entering the role of family caregiving was associated with an improvement in physical health during the six years follow up period. Conclusion: Although the health impact of different caregiving transitions in late life does not differ, individual conditions and health at baseline are important parameters to take into consideration to improve long-term health in family caregivers.

Keywords: family caregiving, health, old age, transition

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Authors: Vasoontara Yiengprugsawan, Sam-ang Seubsman

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As Thais live longer, caregivers will become even more important to social and healthcare systems. Commonly reported in many low and middle‐income countries in Asia, formal social welfare services to support caregivers are lacking and informal family support will be required for all levels of care. In 2005, 87,151 open‐university adults were recruited to the Thai Cohort Study, with the majority aged between 25 and 39 years, and residing nationwide. At the 4‐year follow up in 2009 (n=60569) and the 8‐year follow‐up in 2013 (n=42785), prospective cohort participants were asked if they provide care for chronically ill, disabled, or frail family members. Among Thai cohort members reporting between 2009 and 2013, approximately 56% were not caregivers in either year, 24.5% reported providing care in 2009 only, 8.6% in 2013 only, and 10.6% reported providing care at both time points. Caregivers in the cohort reported providing financial support, help with shopping, emotional support, and assist with daily activities. Kessler 6 psychological distress scale, measured in both 2009 and 2013, was used as the primary outcome of a relationship between caregiving status and mental health. Using multivariate logistic regression, our 4‐year longitudinal findings revealed that cohort members who reported providing care at both time points were 1.4 to 1.6 times more likely to report high psychological distress than non‐caregivers, after accounting for potential covariates. With increasing needs for informal care provided by family members, the future health and social welfare system will need to provide adequate support to caregivers (e.g., respite care, clinical support and information for the family, and awareness of mental health among caregivers).

Keywords: family caregivers, psychological distress, prospective cohort, longitudinal study, Thailand

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Authors: Akram Farhadi, Mahshid Froughan, Farahnaz Mohammadi, Maryam Rassouli, Maryam Noroozian, Leila Sadeghmoghaddam

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Background: The caregivers’ assessment of their own caregiving is considered the most important concept in exploring their experiences and has a major role in care outcomes. The rising number of people with dementia and their need for care makes family caregiving really important matter to consider and evaluate. Objectives: This study was conducted with the aim to naturalize and validate the Persian version of the Revised Caregiving Appraisal Scale (RCAS) in family caregivers of older adults with dementia. Patients and Method: In this cross-sectional methodological study, the Revised Caregiving Appraisal Scale (RCAS) was translated using International Quality of Life Assessment (IQOLA) protocol, and then a panel of experts examined its face and content validities. To ensure construct validity, the translated Revised Caregiving Appraisal Scale (RCAS) was completed by 236 family caregivers, and factor construct of the scale was assessed with 5 initial factors using confirmatory factor analysis. Internal consistency was found using Cronbach's alpha, and test-retest using intraclass correlation coefficient. Confirmatory factor analysis was performed in LISREL-8.8 software in Windows®. Results: Participating caregivers' mean age was 53.5±13.13 years. Content and face validities of the scale were confirmed according to the views expressed by family caregivers and panel of experts. The confirmatory factor analysis (CFA) results showed appropriate values for all fitness indices (RMSEA=0.046, df/X2=2.428, CFI=0.98, AGFI=0.84, GFI=0.9), and the 5-factor model was confirmed with 27 items. Overall Cronbach's alpha was reported 0.894, and test retest showed overall ICC=0.94. Conclusion: The Persian version of RCAS is a valid and reliable tool for family caregivers' assessment of their caregiving of older adults with dementia, and can be useful in assessing family caregiving interventions.

Keywords: psychometric, family caregivers, reliability and validity, elderly, dementia, self-appraisal

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Authors: Farzana Sharmin, Mohammad Tipu Sultan

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Emerging new media technology such as social media and social networking sites have changed the family business dynamics in Eastern Asia. The family business trends in China has been developed at an exponential rate towards technology. In the last two decades, many of this family business has succeeded in becoming major players in the Chinese and world economy. But there are a very few availabilities of literature on Chinese context regarding social media acceptance in terms of the family business. Therefore, this study has tried to cover the gap between culture and new media technology to understand the attitude of Chinese young entrepreneurs’ towards the family business. This paper focused on two cultural dimensions (collectivism, long-term orientation), which are adopted from Greet Hofstede’s. Additionally perceived usefulness and ease of use adopted from the Technology Acceptance Model (TAM) to explore the actual behavior of technology acceptance for the family business. A quantitative survey method (n=275) used to collect data Chinese family business owners' in Shanghai. The inferential statistical analysis was applied to extract trait factors, and verification of the model, respectively. The research results found that using social media for family business promotion has highly influenced by cultural values (collectivism and long-term orientation). The theoretical contribution of this research may also assist policymakers and practitioners of other developing countries to advertise and promote the family business through social media.

Keywords: China, cultural dimensions, family business, technology acceptance model, TAM

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Authors: Tomohiro Uchida, Noriaki Satake, Toshimichi Nakaho, Akira Inoue, Hidemitsu Saito

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In this study, we assessed the bereavement risk of family caregivers of patients with cancer. In the palliative care unit of Tohoku University Hospital, we conducted a family psychoeducation session to support the family caregivers of patients with cancer. A total of 50 participants (8 males and 42 females; mean age = 62.98 years, SD = 11.10) were assessed after the session for bereavement risk using the Japanese version of the Bereavement Risk Assessment Tool (BRAT-J). According to the BRAT-J scores, eight participants were considered to be having no known risk (Level 1), seventeen had minimal risk (Level 2), twenty had a low risk (Level 3), four had a moderate risk (Level 4), and one had a high risk (Level 5). Of these participants, seven participants had completed the follow-up postal survey that assessed their psychological distress (the Kessler Psychological Distress Scale: K6) to compare the bereavement risk. According to the K6 scores, three-fourth of the individuals, who were considered to be at Level 3 on the BRAT-J, scored higher than the cutoff point (>10) for the detection of depressive disorder. On the other hand, one-third of the individuals, who were considered to be at Level 2 on the BRAT-J, scored higher than the cutoff point. Therefore, it appears that the BRAT-J can predict the likelihood of difficulties or complications in bereaved family caregivers. This research was approved by the Ethics Committee of Tohoku University Graduate School of Medicine and Tohoku University Hospital.

Keywords: palliative care, family caregivers, bereavement risk, BRAT, post-loss psychological distress

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Authors: Mei Li, Victor Meddalena

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Background: Newfoundland and Labrador (NL) has rapidly aging population and is characterized by its vast geography with high proportion of dispersed rural communities when compared to other provinces in Canada. Structural, demographic and geographic factors have created big gaps for rural residents across NL with respect to accessing various health and social services. While the barriers are well documented for patients’ access to cancer care in rural and remote areas, challenges faced by family caregivers are not fully recognized. Caregiving burden coupled with challenges associated with relocation and frequent travels create situations where caregivers are vulnerable physically, emotionally, financially and socially. This study examines the experiences of family caregivers living in rural NL through a social justice lens. It is expected to identify the gaps existing in social policy and support for rural family caregivers. It will make a novel contribution to the literature in this regard. Methods: Design: This qualitative study adopted the hermeneutic phenomenology to best describe and interpret rural-based family caregivers’ living experiences and explore the meaning, impact, and the influence of both individual experience and contextual factors shaping these experiences. Data Collection: In-depth interviews with key informants were conducted with 12 participants from various rural communities in NL. A case study was also used to explore an individual’s experience in complex social units consisting of multiple variables of in-depth understanding of the reality. Data Analysis: Thematic analysis guided by the Voice-Centred Relational (VCR) method was employed to explore the relationships and contexts of participants. Emerging Themes: Six major emerging themes were identified, namely, overwhelming caregiving burden on rural family caregivers, long existing financial hardship, separation from family and community, low level of social support and self-reliance coping strategies, and social vulnerability and isolation. Conclusion: Understanding the lived experiences of rural-based family caregivers is critical to inform the policy makers the gap of health and social service in NL. The findings of this study also have implications for family caregivers who are vulnerable in other similar contexts. This study adds innovative insights for policy making and service provision in this regard.

Keywords: family caregivers, policy, relocation, rural

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Authors: Jenny Oliveros Lao Phillips, Arturo E. Osorio, José Alves

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Family business are the dominant form of business in the world, and Chinese family business (CFB) is a unique type of family business that relies on collective action to survive. This paper argues that in CFBs, entrepreneurial actions are transgenerational collective endeavors, and successors are groomed as stewards of the family legacy. Work-life relationship in CFBs is about synergy and not balance because the family identity is the business identity, and vice-versa. Using five in-depth case studies, this research introduces an alternative understanding of CFBs and proposes a model of work-life synergy in transgenerational entrepreneurship based on discussion of five theory-based propositions. This model explains that through emphasizing on the business family’s shared value and entrepreneurial legacy, elements of trust, shared identity and stewardship of family members are enhanced which leads to collective action and goal of the business family, resulting in transgenerational entrepreneurship. Limitations and future research are presented.

Keywords: Chinese family business, family legacy, stewardship, transgenerational entrepreneurship, work-life synergy

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Authors: Fei Wan Ngai

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Background: Family and marital functioning has become an important public health issue because it is vital to child development and well-being. Objective: This study was designed to examine the changes in family and marital functioning among Chinese women during the transition to motherhood. Methods: A longitudinal design was used. A convenience sample of 202 Chinese childbearing women completed the Medical Outcomes Study Family and Marital Functioning Measures during pregnancy, at 6 weeks and at 6 months postpartum. Results: The results showed that women experienced substantial decline in their family and marital functioning from pregnancy to 6 weeks and 6 months postpartum. Conclusions: The findings of this study highlight the need for more attention to family and marital functioning among women after childbirth. Culturally relevant interventions should be developed to assist women in facing the challenges of new motherhood and achieving a better family and marital functioning.

Keywords: family and marital functioning, perinatal period, women

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Authors: Elzbieta Sikorska-Simmons

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Dementia is a progressive terminal disease. Despite this recognition, research shows that most family caregivers do not know it, and it is unclear how this knowledge affects the quality of patient care. The aim of this qualitative study of 20 family caregivers for patients with advanced dementia is to examine how the caregiver's knowledge about dementia affects the quality of patient care in the context of healthcare decision-making, advanced care planning, and access to adequate support systems. Knowledge about dementia implies family caregivers' understanding of dementia trajectories, common symptoms/complications, and alternative treatment options (e.g., comfort feeding versus tube feeding). Data were collected in semi-structured interviews with 20 family caregivers. The interviews were conducted in person by the author and designed to elicit rich descriptions of family caregivers' experiences with healthcare decision-making and the management of common symptoms/complications of end-stage dementia as patient healthcare proxies. The study findings suggest that caregivers who recognize that dementia is a terminal disease are less likely to opt for life-extending treatments during the advanced stages. They are also more likely to seek palliative/hospice care, and consequently, they are better able to avoid unnecessary hospitalizations or medical procedures. For example, those who know that dementia is a terminal disease tend to opt for "comfort feeding" rather than "tube feeding" in managing the swallowing difficulties that accompany advanced dementia. In the context of advance care planning, family caregivers who know that dementia is a terminal disease tend to have more meaningful advance directives (e.g., Power of Attorney and Do Not Resuscitate orders). They are better prepared to anticipate common problems and pursue treatments that foster the best quality of patient life and care. Greater knowledge about advanced dementia helps them make more informed decisions that focus on enhancing the quality of patient life rather than just survival. In addition, those who know that dementia is a terminal disease are more likely to establish adequate support systems to help them cope with the complex demands of caregiving. For example, they are more likely to seek dementia-oriented primary care programs that offer house visits or respite services. Based on the study findings, knowledge about dementia as a terminal disease is critical in the optimal management of patient care needs and the establishment of adequate support systems. More research is needed to better understand what caregivers need to know to better prepare them for the complex demands of dementia caregiving.

Keywords: dementia education, family caregiver, management of dementia, quality of care

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Authors: Bowen Li, Dan Shu, Shiguang Pang, Li Wang, Qian Liu

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Background: Every year, approximately 429,000 adolescents aged 0-19 are diagnosed with cancer worldwide. The diagnosis brings about substantial psychological pressure and caregiving responsibilities for family members and impacts the families significantly. Family resilience has been found to reduce caregiver distress and can also foster post-traumatic growth in cancer survivors. However, current research on family resilience in childhood cancer mainly focuses on individual caregiver resilience and child adaptation, with less attention given to categorizing family resilience among caregivers of children with cancer. Method: A total of 292 caregivers of children with cancer were recruited from four tertiary hospitals in central China from July 2022 to March 2024. This study was approved by the ethics committee, and participants provided informed consent, with the option to withdraw at any time. The Family Resilience Assessment Scale was used to measure family resilience among caregivers of children with cancer. The Quality of Life scale-family, The Perceived Social Support Scale, and The Connor-Davidson Resilience Scale were used to measure potential influencing factors. This study used latent profile analysis (LPA) to identify latent categories of family resilience among caregivers of children with cancer. Binary logistic regression was used to analyze the influencing factors of family resilience. Results: The results reveal two distinct categories: "high family resilience" and "low family resilience." "Low family resilience" group accounts for 85.96% of the total while "high family resilience" group is 14.04%. "High family resilience" scores higher across all dimensions compared to "low family resilience". Within-group comparisons reveals that "family communication and problem-solving" and "empowering the meaning of adversity" received the highest scores, while "utilizing social and economic resources" scores the lowest. "Maintaining a positive attitude" scores similarly high to "family communication and problem-solving" in the high family resilience group, whereas it scores similarly low to "utilizing social and economic resources" in the low family resilience group. In single-factor analysis, residence, number of siblings, caregiver's education level, resilience, social support, quality of life, physical well-being and psychological well-being showed significant difference between two categories. In binary logistic regression analysis, households with only one child are more likely to exhibit low family resilience, whereas high personal resilience is associated with a high level of family resilience. Conclusion: Most families with children suffering from cancer require strengthened family resilience. Support for utilizing socio-economic resources is important for both high and low family resilience families. Single-child families and caregivers with lower resilience require more attention. These findings imply the development of targeted interventions to enhance family resilience among families with children of cancer. Future studies could involve children and other family members for a comprehensive understanding of family resilience. Longitudinal studies are necessary to explore the dynamic changes in family resilience throughout the cancer journey.

Keywords: cancer children, caregivers, family resilience, latent profile analysis

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Authors: Mou Juliet Rebeiro, S. M. Abul Kalam Azad

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This study was carried out to see the anxiety and depression in caregivers of autistic children. The objectives of the research were to assess depression and anxiety among caregivers of autistic children and to find out the experience of caregivers. For this purpose, the research was conducted on a sample of 39 caregivers of autistic children. Participants were taken from a special school. To collect data for this study each of the caregivers were administered questionnaire comprising scales to measure anxiety and depression and some responses of the participants were taken through interview based on a topic guide. Obtained quantitative data were analyzed by using statistical analysis and qualitative data were analyzed according to themes. Mean of the anxiety score (55.85) and depression score (108.33) is above the cutoff point. Results showed that anxiety and depression is clinically present in caregivers of autistic children. Most of the caregivers experienced behavior, emotional, cognitive and social problems of their child that is linked with anxiety and depression.

Keywords: anxiety, autism, caregiver, depression

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Authors: D. Estrella, A. Silva, R. Zapata, H. Rubio

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A total of 100 primary caregivers (mothers, fathers, grandparents) with at least one child or grandchild with a diagnosis of congenital bilateral profound deafness were assessed in order to evaluate the functionality of families with a deaf member, who was evaluated by specialists in audiology, molecular biology, genetics and psychology. After confirmation of the clinical diagnosis, DNA from the patients and parents were analyzed in search of the 35delG deletion of the GJB2 gene to determine who possessed the mutation. All primary caregivers were provided psychological support, regardless of whether or not they had the mutation, and prior and subsequent, the family APGAR test was applied. All parents, grandparents were informed of the results of the genetic analysis during the psychological intervention. The family APGAR, after psychological and genetic counseling, showed that 14% perceived their families as functional, 62% moderately functional and 24% dysfunctional. This shows the importance of psychological support in family functionality that has a direct impact on the quality of life of these families.

Keywords: deafness, psychological support, family, adaptation to disability

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Authors: Ireen Manase Kabembo, Patrick Chanda

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Background: Substance use disorders are among the chronic conditions that affect all age groups. Worldwide, there is an increase in young people affected by SUDs, which implies that more family members are transitioning into the caregiver role. Family caregivers play a buffering role in the formal healthcare system due to their involvement in caring for persons with acute and chronic conditions in the home setting. Family carers of youth with problematic alcohol and marijuana use experience myriad challenges in managing daily care for this medically vulnerable group. In addition, the poor health-seeking behaviours of youth with SUDs characterized by eluding treatment and runaway tendencies coupled with the effects of the pandemic made caregiving a daunting task for most family caregivers. Issues such as limited and unavailable psychotropic medications, social stigma and discrimination, financial hurdles, systemic barriers in adolescent and young adult mental healthcare services, and the lack of a perceived vulnerability to Covid-19 by youth with SUDs are experiences of family caretakers. Methods: A qualitative study with 30 family caregivers of youth aged 16-24 explored their lived experiences and subjective meanings using two in-depth semi-structured interviews, a caregiving timeline, and participant observation. Findings: Results indicate that most family caregivers had challenges managing care for treatment elusive youth, let alone having them adhere to Covid-19 regulations. However, youth who utilized healthcare services and adhered to treatment regimens had positive outcomes and sustained recovery. The effects of the pandemic, such as job losses and the closure of businesses, further exacerbated the financial challenges experienced by family caregivers, making it difficult to purchase needed medications and daily necessities for the youth. The unabated stigma and discrimination of families of substance-dependent youth in Zambian communities further isolated family caregivers, leaving them with limited support. Conclusion: Since young people with SUDs have a compromised mental capacity due to the cognitive impairments that come with continued substance abuse, they often have difficulties making sound judgements, including the need to utilize SUD recovery services. Also, their tendency to not adhere to the Covid-19 pandemic requirements places them at a higher risk for adverse health outcomes in the (post) pandemic era. This calls for urgent implementation of robust youth mental health services that address prevention and recovery for these emerging adults grappling with substance use disorders. Support for their family caregivers, often overlooked, cannot be overemphasized.

Keywords: chronic care management, Covid-19 pandemic, family caregivers, youth with substance use disorders

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Authors: Budsarin Padwang, Darunee Jongudomkarn, Thawan Nieamsup, Autchareeya Patumwan, Rutja Phuphaibul

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In Northern Thailand, a pilot study by the qualitative data, on caring for family members with chronic illness/bedridden based on in-depth interviews of the 12 elderly caregivers in family was carried out during November to December 2017. There are four families that living with three generations in the family. This report is part of a larger study of 'The intergenerational contract of the family in long-term care for older members' to understand the situation and context related to the research questions. Content analysis was obtained and the results revealed as followings. 1) No choice and no freedom: most caregivers were asked by their family members to do the care giving roles because of various appropriate reasons and they could not refuse and felt like having no freedom. 2) ‘Katanyu’ to the parents: The Thai ideology of making merit by taking care of parents was beliefs to do the best in their caregiver roles. 3) The family commitments: The issues of family caring and relationships were the key value of keeping family members to take care of older members with chronic illness/bedridden. The preliminary findings can be beneficial for other regions and will lead to in-depth explore to answer the research questions of the larger study in the future.

Keywords: intergenerational contract, long term care, older members, generational family

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Authors: Adriane Amend, Leidiene Ferreira Santos, Daniella Pires Nunes

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The experience of assuming or caring for older persons dependents by relatives is a complex task that encompasses or affective involvement, the demand for technical activities and or psychological support. It would be necessary to understand the situations related to the caregiver, the person and the environment, which help the family difficulty, as a caregiver to lead this role. Objective: To identify the forces that drive and restrict the care process of family caregivers of the older adults. Method: Descriptive and exploratory research, with a qualitative approach, which has as a reference the Force Field Theory. Five family caregivers of older adult’s dependents residing in the city of Palmas, Tocantins, Brazil will participate. The data were collected from December 2021 to February 2022, through a semi-structured individual interview, and submitted to content analysis. Results: As forces that drive or process of caring for family caregivers were: the account of compassionate attitudes and patience of the caregiver (I); to the collaboration of the other person to the care and to the body structure of the same (Other); and the supports of other people not cared for and structural, such as adaptations in the room, read and bathroom, as in the presence of air conditioners (Environment). Among the restrictive forces of care we mention difficulties in delegating care to another person, or stress of care and other personal demands (I); imposition of the older person about care and e a transfer from bed to hip (Other); e lack of accessibility of the house and absence of air conditioning and hospital bed (Environment). Conclusion: The results show that there are driving forces with the caregiver's attitude and feelings, a bond as an idol and support for the caregiver and the environment. On the other hand, conflicting ties, absence of physical structure and daily and continuous care shifts, can significantly compromise well-being or the cycle of older adult, caregiver and care.

Keywords: caregivers, frail elderly, perception, geriatric nursing

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Authors: Ngoc Dao

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State Paid Leave Programs (PFL) complement the Federal Family and Medical Leave Act (FMLA) by offering workers time off to take care of their newborns or sick family members with supplemental income, and further job protection. Up to date, four states (California, New Jersey, Rhode Island, and New York) implemented paid leave policies. This study adds further understanding of how state PFL policies help working families with elder parents improve their work balance by examining the paid leave policies on labor outcomes. Early findings suggest State Paid Leave Policies reduced the likelihood to exit the labor market by 1.6 percentage points, with larger effects among paid leave policies with job protection feature. In addition, the results imply job protection in paid leave policies matters in helping employed caregivers attach to the labor market.

Keywords: family paid leave, working caregivers, employment, social welfare

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Authors: Hanna Gulema, Meaza Demissie, Alemayehu Worku, Tesfaye Assebe Yadeta, Yemane Berhane

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Background: In patriarchal societies, female caregivers decide on food allocation within a family based on prevailing gender and age norms, which may lead to inequality that does not favor young adolescent girls. This study evaluated the effect of a community-based social norm intervention involving female caregivers in West Hararghe, Ethiopia. The intervention was engaging female caregivers along with other adult influential community members to deliberate and act on food allocation social norms in a process referred to as Social Analysis and Action (SAA). Method: We used data from a large quasi-experimental study to compare family eating practices between those who participated in the Social Analyses and Action intervention and those who did not. The respondents were female caregivers in households with young adolescent girls (ages 13 and 14 years). The study’s outcome was the practice of family eating together from the same dish. The difference in difference (DID) analysis with the Mixed effect logistic regression model was used to examine the effect of the intervention. Result: The results showed improved family eating practices in both groups, but the improvement was greater in the intervention group. The DID analysis showed an 11.99 percentage points greater improvement in the intervention arm than in the control arm. The mixed-effect regression produced an adjusted odds ratio of 2.08 (95% CI [1.06–4.09]) after controlling selected covariates, p-value 0.033. Conclusions: The involvement of influential adult community members significantly improves the family practice of eating together in households where adolescent girls are present in our study. The intervention has great potential to minimize household food allocation inequalities and thus improve the nutritional status of young adolescents. Further studies are necessary to evaluate the effectiveness of the intervention in different social norm contexts to formulate policy and guidelines for scale-up.

Keywords: family eating practice, social norm intervention, adolescence girls, caregiver

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Authors: Zurong Liang

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Chinese social work has experienced a sharp rise in staff turnover. Work-family conflict is a key risk factor for employees’ turnover intention. While the relationship between work-family conflict and turnover intention has been widely documented, little is known about its mediating and moderating mechanisms, especially among social workers in China. This study explored the mediating role of job-based and collective psychological ownership and the moderating role of person-organization value congruence. The study drew on data from the China Social Work Longitudinal Study 2019, a nationally representative sample of 1,421 Chinese social workers (79.73% female; mean age = 28.9 years old). We performed a moderated mediation analysis combining a simple slope test and the Johnson-Neyman technique. Both job-based psychological ownership and collective psychological ownership were found to mediate the association between work-family conflict and turnover intention. Person-organization value congruence moderated the indirect relationship between work-family conflict and turnover intention via collective psychological ownership. This study enhances understanding of the impact of the psychological mechanisms of work-family conflict on Chinese social workers’ turnover intention. Specific strategies should be adopted to establish a work environment that supports psychological ownership, enhances social workers’ identification with and attachment to their organizations, and thus reduces their turnover intention.

Keywords: turnover, work-family conflict, ownership, social worker, China

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Authors: Sasitorn Chetanont

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The objectives of this study are to study Chinese tourist’s Behaviors towards travel and shopping in Bangkok. The research methodology was a quantitative research. The sample of this research was 400 Chinese tourists in Bangkok chosen by the accidental sampling and the purposive sampling. Inferential Statistics Analysis by using the Chi-square statistics. As for the results of this study the researcher found that differences between personal, social and cultural information, i.e., gender, age, place of residence, educational level, occupation, income, family, and main objectives of tourism with behaviors of Chinese tourists in Bangkok towards travel and shopping in Bangkok.

Keywords: tourists’ behavior, Chinese tourists, travelling, expenses in travels

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Authors: Jiashu Shen

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Background: The abortion rate has increased significantly, which is harmful especially to adolescents, making repeat induced abortion (RIA) among adolescents a social problem. This study aims to investigate the associations of family support with sexual behavior and repeat induced abortion among Chinese adolescents Methods: This study based on a national hospital-based sample with 945 girls aged 15-19 who underwent induced abortion in 43 hospitals. Multivariate logistic regressions were performed to estimated odds ratio for the risk factors. Results: Adolescences living with parents were less inclined to undergo RIA, especially if they were rural (adjusted odds ratio=0.48 95%CI 0.31-0.72) and local (adjusted odds ratio =0.39 95%=0.23-0.66). Those with parental financial support were likely to have less sexual partnersand take contraceptives more regularly. Those with higher self-perceived importance in family were more likely to take contraceptives during the first sexual intercourse in higher age, and with higher first abortion age and less sexual partners. Conclusion: In mainland China, living with parents, parental financial support, high self-perceived importance in family and adequate family sexuality communications may contribute to lower incidence of RIA.

Keywords: Chinese adolescent, family support, repeat induced abortion, sexual behavior

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