Caregivers In China Research Articles

Burden of heart failure on caregivers in China: results from a cross-sectional survey.

PurposeFamily and friends play a pivotal role in caring for patients with heart failure (HF); however, evidence of the impact of caregiving is limited. The objectives of this study were to describe the burden of caregiving on informal caregivers of patients with chronic HF in China.Materials and methodsA cross-sectional survey of cardiologists, their patients with HF, and those patients’ caregivers was conducted. Patient record forms were completed by 150 cardiologists for 10 consecutive patients. Caregivers of these patients were invited to complete a questionnaire.ResultsOverall, 458 caregivers completed a questionnaire (mean ± standard deviation age 60.1±10.6 years; 60% female; 77% spouses; 74% retired). Caregivers spent a mean of 24.5 (16.9) hours caregiving per week, and a third reported a reduction in their social activity, time for themselves, or time for family. Caregivers in employment took several days off work in the past 3 months owing to caregiving, sometimes resulting in reduced income. Up to 79% of caregivers reported an impact on their physical or emotional well-being, and 57% reported deterioration in their objective health status. Inconsistencies stemming from differences in the three-level five-dimension EuroQol questionnaire and HF Caregiver Questionnaire were observed for the impact of caregiving on caregivers’ health-related quality of life.ConclusionAssisting patients with HF is associated with caregiver burden. Addressing the needs of caregivers may help to promote their continued support and improve patient outcomes.

Parent and caregiver perceptions about the safety and effectiveness of foreign and domestic vaccines in Shanghai, China.

BackgroundChinese parents have access to domestic and foreign vaccines for their children. Their vaccine preferences are unclear, especially given recent pharmaceutical quality scandals and widely held beliefs deriving from Traditional Chinese Medicine (TCM). This study characterized parental beliefs about the safety and effectiveness of Chinese and foreign vaccines.MethodsIn May 2014, caregivers of young children at public immunization clinics in Shanghai, China, responded to a survey on vaccine perceptions. The two outcomes (differential belief in the effectiveness and safety of foreign vs domestic vaccines) were separately regressed onto demographic predictors in multinomial logistic regression models.ResultsAmong 618 caregivers, 56% thought the effectiveness of domestic and foreign vaccines were comparable; 33% thought domestic were more effective and 11% foreign. Two-thirds thought foreign and domestic vaccines had similar safety; 11% thought domestic were safer and 21% thought foreign were safer. Compared to college graduates, those with a high school education or less had greater odds of believing domestic vaccines were more effective, and also had greater odds of believing imported vaccines were safer. Greater trust in TCM was not associated with differential beliefs in the effectiveness or safety of domestic vs foreign vaccines.ConclusionsAlthough there is no evidence that foreign and domestic vaccines differ in either effectiveness or safety, less educated caregivers in China (but not those with greater trust in TCM) appear to believe such differences exist. Further exploration of the causes of these beliefs may be necessary in order to optimize vaccine communications in China.

Relationships between family resilience and posttraumatic growth in breast cancer survivors and caregiver burden.

To examine the relationships between family resilience and posttraumatic growth (PTG) of breast cancer survivors and caregiver burden among principal caregivers in China. Participants in this cross-sectional study comprised 108 women aged 26 to 74years (M=49, SD=9) with early-stage breast cancer and 108 principal caregivers. Participants were recruited from a comprehensive cancer center of a public hospital in Shandong Province, China. The principal caregivers completed the Shortened Chinese Version of the Family Resilience Assessment Scale and the Chinese Version of the Zarit Caregiver Burden Interview; patients completed the Short Form of the Posttraumatic Growth Inventory and questions designed to obtain sociodemographic information. Hierarchical regression analysis was conducted to assess the adjusted association between family resilience and PTG and caregiver burden, while controlling for sociodemographics. Families showed a slightly elevated level of family resilience since the cancer experience, and patients showed a moderate degree of PTG. Principal caregivers reported moderate burden. The Shortened Chinese Version of the Family Resilience Assessment Scale total score was positively related to the Short Form of the Posttraumatic Growth Inventory total score (β=.28, P<.01) and was negatively related to Zarit Caregiver Burden Interview total score (β=-.28, P<.01). Family resilience impacts PTG of breast cancer survivors and caregiver burden. Our findings indicated the necessity of interventions to facilitate family resilience, promote PTG among breast cancer survivors, and decrease family members' caregiver burden.

We don't dare to tell her … we don't know where to begin: Disclosure experiences and challenges among adolescents living with HIV and their caregivers in China.

Background and ObjectivesWith increasing access to antiretroviral therapy, HIV-infected youth are living longer, but are vulnerable as they navigate the transition to adulthood while managing a highly stigmatized condition. Knowing one's HIV status is critical to assuming responsibility for one's health. The process of disclosure to adolescents living with HIV is not well understood globally, even less so in China. To help address this gap, we explored practices for disclosure to adolescents living with HIV (ALHIV) among Chinese caregivers and clinicians, and the disclosure experiences of the adolescents themselves using qualitative methods.Design and SettingThe study was conducted in 2014 at the Guangxi Center for Disease Control and Prevention ART (CDC-ART) clinic in Nanning, China. We used a qualitative design, incorporating in-depth interviews (IDIs) and focus group discussions (FGDs).Patients and MethodsWe conducted IDIs with 19 adolescent/caregiver dyads and five FGDs with adolescents and clinicians. Adolescent participants were aged 10–15 years, and had contracted HIV perinatally. Using NVivoTM software, we summarized major themes.ResultsOnly 6/19 caregivers reported disclosing to their child; matched adolescents' statements indicate that 9/19 children knew their HIV status. Caregivers planned to disclose when children were 14 years or older. Concerns about stigma toward children and families were associated with reluctance to disclose.ConclusionDisclosure to adolescents living with HIV in China was delayed compared with recommended guidelines. Culturally appropriate disclosure strategies should be developed, focused on supporting caregivers and de-stigmatizing HIV.

What is the meaning of filial piety for people with dementia and their family caregivers in China under the current social transitions? An interpretative phenomenological analysis.

The filial piety model of family centred care has dominated Chinese society for thousands of years. The ways in which filial piety is presented are being modified and modernised as China undergoes social transitions. The study aims to understand the meaning of filial piety for people with dementia and family caregivers. Semi-structured interviews with people with dementia ( n = 10) and family caregivers ( n = 14) were conducted. Data were analysed using interpretative phenomenological analysis. Three themes emerged: (a) ‘Being filial is a cultural continuity and my future investment’. (b) ‘The changed perception and ways of being filial’. (c) ‘Filial responsibility is a social and cultural convention, but not my personal choice’. This study highlights the importance of cultural values in family care decision making and in shaping filial responsibilities. It indicates that filial obligation can be maintained through social support, even though the nature of filial piety has been changed by social transitions.

Impact Factors and Attitudes Toward Organ Donation Among Transplantation Patients and Their Caregivers in China

PurposeThis study's purpose was to investigate the attitudes toward organ donation among renal transplantation patients and their caregivers. In addition, we sought to explore the impact factors that affect their attitudes toward deceased organ donation. Design and MethodsA self-administrated questionnaire was used, which consisted of two parts: 1) demographic data, and 2) transplantation and donation-related data. This study was conducted in three transplantation follow-up centers in three hospitals using a cross-sectional approach. SPSS 17.0 software was used to analysis descriptive and inferential statistics for data. The responses were analyzed using descriptive statistics and logistic regression analysis. ResultsWe received 426 effective questionnaires. The renal transplantation patients' mean age was 40.84 years. Among these patients, 67.8% were willing to accept the organ transplantation surgery for their relatives, 67.4% were willing to donate a living kidney to a close relative, 62.7% were willing to donate organs after death, 53.5% were willing to register in the national organ donation system, and 51.4% were willing to sign the organ donation consent when facing their relatives becoming a potential organ donor. Age, marriage status, education level, understanding of transplantation procedures and understanding of donation procedures had statistical significance in the difference of the attitudes toward donate their organs after death (P < .05). ConclusionsRenal transplantation patients in our study are more willing to donate organs after death than their caregivers, but both their attitudes toward deceased donation were not very optimistic. There is a significant relationship between participants' willingness and knowledge of organ donation; patients with more understanding of the transplantation and donation procedure were more willing to donate organs after death. Affected by traditional values such as Confucianism, many people still cannot accept registering in the national organ donation system or sign the organ donation consent when facing their relatives becoming potential organ donors. Clinical RelevanceThere is a need to give adequate training regarding donation to increase donation rates. The government must provide education from the perspective of scientific knowledge to change the traditional views of the public, which may then increase the donation rate in China.

The Relationship Between Mutuality and Health-Related Quality of Life in Adult Child Caregivers in China.

The strain inherent in caregiving relationships between adult children and aging parents is a prominent issue in contemporary China due to a combination of demographic and socioeconomic changes. The purpose of this study was to explore how mutuality, a positive quality of caregiving relationships, contributes to the physical health and mental health (health-related quality of life [HRQoL]) of adult child caregivers [ACCs] of parent stroke survivors. A cross-sectional correlational study was conducted on a nonproportional quota sample of 126 ACCs, using questionnaires of demographics, the 15-item Mutuality Scale, and the Second Version of the Standard 12-Item Health Survey (SF-12v2). Higher mutuality was found to be correlated with better caregiver physical health and mental health. However, after adjusting for the covariates, mutuality significantly explained 4.6% of the variance of caregiver physical health (β = .22, ΔR2 = .046, p < .01) but it did not significantly explain the variance of caregiver mental health. Although multiple factors correlate with Chinese family caregivers' HRQoL, this was the first study exploring the impact of caregiver-care receiver dyadic relationships on caregiver HRQoL in mainland China by using a mutuality scale with SF-12v2. Despite the fact that the Chinese tradition of filial piety can facilitate mutuality, socioeconomic changes and legislation that require adult children to care for aging parents appear to create high stress among family caregivers. Higher levels of mutuality contribute to better physical health in Chinese family caregivers. Therefore, culturally appropriate family nursing strategies and social policies in China could enhance caregiver mutuality and potentially promote their HRQoL, in particular physical health.

The Impact of Eldercare on Adult Children's Health and Employment in Transitional China.

This paper explores the content and extent of the burden of caregiving for Chinese families in transition. It sets out to understand how Chinese families manage to balance family caregiving responsibilities with employment, the impact of the existing social institutions on family caregiving practices, and the risks that caregivers have to face. Data were collected from a sample of 214 workers from 14 manufacturing companies in an industrialized city in central China in 2013. Analysis revealed that common types of eldercare were assisting with activities of daily living and medical related care; middle aged employed respondents were most likely to be the caregivers to older family members; financial and time demands of care were challenging for caregivers, but women with more education and a secure job responded to the pressure of care giving better than those with less education and insecure jobs. An absence of workplace policies to support family caregivers was reported to create insecure employment conditions among middle aged workers. The findings imply an urgent need for legislative action and workplace policy that support family caregiving in China.

Pulmonary infection control window as a switching point for sequential ventilation in the treatment of COPD patients: a meta-analysis.

PurposeChoosing the appropriate time to switch to noninvasive positive-pressure ventilation (NPPV) plays a crucial role in promoting successful weaning. However, optimal timing for transitioning and weaning patients from mechanical ventilation (MV) to NPPV has not been clearly established. In China, the pulmonary infection control (PIC) window as a switching point for weaning from MV has been performed for many years, without definitive evidence of clinical benefit. This study aimed to summarize the evidence for NPPV at the PIC window for patients with respiratory failure from COPD.MethodsA comprehensive search for randomized controlled trials (RCTs) was performed. The trials were all parallel studies comparing the PIC window weaning strategy versus conventional weaning strategy in treatment of patients with respiratory failure due to COPD.ResultsSixteen studies of 647 participants were eligible. When compared with conventional weaning strategy, early extubation followed by NPPV at the point of PIC window significantly reduced the mortality rate (risk ratios [RRs] 0.36, 95% confidence interval [CI] 0.23 to 0.57) and ventilator-associated pneumonia (VAP) (RR 0.28, 95% CI 0.19 to 0.41); it also decreased the duration of invasive ventilation (weighted mean difference [WMD] −7.68 days, 95% CI −9.43 to −5.93) and total duration of ventilation (WMD −5.93 days, 95% CI −7.29 to −4.58), which also shortened the lengths of stay in an intensive care unit (WMD −8.51 days, 95% CI −10.23 to −6.79), as well as length of stay in hospital (WMD −8.47 days, 95% CI −8.61 to −7.33).ConclusionThe results showed that the PIC window as a switching point for sequential ventilation in treatment of respiratory failure in COPD patients may be beneficial. It might yield not only relevant information for caregivers in China but also new insights for considering the PIC window by physicians in other countries.

Ethnography of Eldercare by Elders in Shanghai, China

While existing media and policy discourse on aging and caregiving in China is dominated by attention to the burden of elder dependency, this article provides an ethnographic glimpse of the under-recognized role of older adults in providing informal care to the elderly in Chinese society today. The analysis is based on a quantitative survey and ethnographic fieldwork involving participant observation and interviews conducted in a residential area of Shanghai Municipality, the Chinese city with the highest degree of population aging in the nation. Conducted between 2010 and 2014, our research examined whether and how older adults in Shanghai can be considered as not just persons in need of care but also as active contributors of eldercare. While we observed senior aid to the aged occurring both within and outside family households in Shanghai, in this article we focus on elder caregiving within the context of the family, with particular attention to caregiving provided by elders’ spouses. Overall, we found that patterns of eldercare in Shanghai today are much more complex than public discourses dominated by the elder dependency concept might lead one to believe. Our study found that many older adult women and men in Shanghai are making significant contributions to eldercare in the form of both spousal mutual aid and spousal primary caregiving. We further found several ways in which the identification of a primary caregiver can be quite complicated in a methodological sense, whether in quantitative or qualitative research. We conclude that more careful scholarly and policy attention to older adults’ contributions is needed to better understand and address the challenges and potentials of China’s aging society.

Smartphone applications for seizure care and management in children and adolescents with epilepsy: Feasibility and acceptability assessment among caregivers in China

Objectiveto determine the feasibility as well as the attitudes among caregivers of children and adolescents with epilepsy in China towards the use of smart phone applications (apps) for the management of seizures. MethodsThe caregivers of children and adolescents with epilepsy, ages ranging from 0 to 15 years, were enrolled in the study from the Epilepsy Prevention and Cure Center of West China Hospital within the time period from June 2015 to December 2015. A 10-item questionnaire gauging the attitudes towards using apps for seizure management was administered to the 390 caregivers. Additionally, data on the demographic and clinic characteristics of the children and adolescents with epilepsy for each caregiver were also collected. ResultsThe results indicated that approximately 99.2% of caregivers own a mobile phone, of which, 97.9% of these mobile phones were smart phones. Despite only 3.1% (12/390) of caregivers currently having an app regarding the management of a chronic illness, 70.2%(274/390) reported that they would use a free seizure management app. The results of the current study indicated that the likelihood of using such a free app increased if the participant was a male as opposed to a female (P=0.03) and among caregivers with a higher education level, a higher annual household income as well as stable job (P<0.001, P<0.001, P=0.02). No statistically significant difference was found in the likelihood of using such a free app among caregivers living in rural as opposed to urban areas (P=0.3). ConclusionsThe results of this study imply a favorable attitude towards the use of apps for epilepsy and seizure management among caregivers. The use of such apps in China thus represents a promising strategy among caregivers for seizure management.

The Relationship Between Mutuality, Filial Piety, and Depression in Family Caregivers in China.

Caregiving to parent stroke survivors in China is increasing and adult child-parent relationships are being challenged. The purpose of this study was to explore whether mutuality and filial piety have a protective role against caregiver depression. A cross-sectional correlational study was conducted with a nonproportional quota sample of 126 caregivers. Surveys were conducted at hospitals or in homes using structured questionnaires: the 15-item Mutuality Scale, the 4-item Filial Attitude Scale, the 9-item Filial Behavior Scale, and the 10-item Center for Epidemiological Studies Depression Scale. Higher mutuality and stronger filial attitudes were significantly associated with less caregiver depression after the covariates were controlled. Mutuality explained 5.5% ( p < .01) and filial attitude explained 4.6% ( p < .01) of the variance in caregiver depression. Mutuality and filial attitude may be protective factors against caregiver depression. Supportive strategies can be implemented to enhance mutuality and filial attitude.

"How Would We Deserve Better?" Rural-Urban Dichotomy in Health Seeking for the Chronically Ill Elderly in China.

As China's older adult population has rapidly increased, the attending increase in chronic disease poses serious concerns regarding disparities in medical care utilization for elders. Drawing on 48 semistructured interviews with elders with chronic conditions and their caregivers in China, this article analyzes two opposite patterns of health-seeking behavior in urban and rural areas. Presenting the findings as a relational model, we argue that the interplay between structures of medical care and cultural discourses about health and (un)worthiness generates different habitus as sets of practices and beliefs that facilitate or hinder elders' and their caregivers' decisions to engage with medical care. By demonstrating the Chinese state's social health insurance reform's failure to improve health-seeking behavior on the ground, our findings suggest that efforts to understand and promote health-seeking behavior need to address the intersections of structural and cultural factors.

Caregiving burden and gain among adult-child caregivers caring for parents with dementia in China: the partial mediating role of reciprocal filial piety.

The majority of the family caregivers are adult children in China. The aim of this study was to examine the mediating role of reciprocal filial piety (RFP) between the care recipient's behavioral and psychological symptoms of dementia (BPSD) and the caregiver's burden or gain among adult-child caregivers caring for parents with dementia in China. Using Kramer's caregiver adaptation model as the research framework, a cross-sectional survey collected data from 401 adult-child caregivers caring for parents with dementia from hospitals in China. Results of the regression analysis revealed that after adjusting for covariates, the regression coefficient between care recipient's BPSD and caregiver burden reduced from c = 1.01 to c' = 0.91 when controlling for RFP. Using the bootstrap approach, the estimated indirect effect through RFP between care recipient's BPSD and caregiver burden was 0.11 (95% CI: 0.03, 0.20). The mediation proportion was 11%. The absolute value of the regression coefficient between care recipient's BPSD and caregiver gain reduced from c = -0.75 to c' = -0.63 when controlling for RFP. The bootstrapped estimate of the indirect effect through RFP between care recipient's BPSD and caregiver gain was -0.12 (95% CI: -0.18, -0.07). The mediation proportion was 12%. The findings suggest that the effect of care recipient's BPSD on caregiver's burden/gain may be related to the level of RFP among adult-child caregivers in China.

A Study on Consciousness of Caregiving in China - Focused on the 20′s ∼ 40′s -

A Study on Consciousness of Caregiving in China - Focused on the 20′s ∼ 40′s -

Nutritional Deficiencies, the Absence of Information and Caregiver Shortcomings: A Qualitative Analysis of Infant Feeding Practices in Rural China.

Background and ObjectivesDevelopment during the first two years of life is critical and has a lasting impact on a child’s health. Poor infant and child nutrition can lead to deficiencies in essential micronutrients, which may cause a weakened immune system and lasting effects on children's growth and development. Recent studies in rural Shaanxi Province found an anemia prevalence of 54.3% among rural children aged six to twelve months. While new large-scale, quantitative research has begun to catalogue the extent of child malnutrition and anemia, no effort has yet been made to look more closely at the potential reasons for rural children’s nutritional deficiencies through qualitative analysis. This study aims to elucidate some of the fundamental causes of poor complementary feeding practices that may lead to anemia among children in rural Shaanxi Province, China.MethodologyWe interviewed sixty caregivers participating in a large survey on child health and nutrition. We conducted three waves of interviews with children’s primary caregivers in seventeen rural villages within four nationally-designated poverty counties in the southern part of Shaanxi Province.ResultsThe qualitative analysis reveals that poor complementary feeding practices are common across our sample. Information gathered from our interviews suggests that complementary feeding practices are impeded by two constraints: absence of understanding topics related to infant health and nutrition under caregivers, as well as inadequate sources of information on these topics. Poverty does not appear to constrain child feeding practices.ConclusionOur results uncover lack of proper knowledge on infant and child nutrition among rural caregivers in China. This situation causes them to fail incorporating micronutrient rich foods in their children's diet. Age-appropriate complementary feeding can stimulate children’s physical and cognitive development, but in its absence it leads to iron-deficiency anemia. We suggest that steps be taken to educate caregivers to improve complementary feeding of their infants and children.

Poor-prognosis disclosure preference in cancer patient-caregiver dyads and its association with their quality of life and perceived stress: a cross-sectional survey in mainland China.

This study attempted to examine the discordance between family caregivers and cancer patients in their poor-prognosis disclosure preferences in mainland China and then ascertained the associations between quality of life (QoL), perceived stress, and poor-prognosis disclosure preferences. Six hundred fifty-one pairs of inpatients and their matched caregivers (participation rate = 92.2%) were recruited in this cross-sectional survey. A set of paired self-administered questionnaires were completed independently by patient-caregiver dyads. Fewer family caregivers than cancer patients felt that poor prognosis should be disclosed to patients (61.2% vs. 90.0%, p < 0.001). Patients' positive poor-prognosis disclosure preference was associated with patients' better QoL (p < 0.05) and caregivers' reduced perceived stress levels (p = 0.013). However, caregivers' poor-prognosis disclosure preference correlated only with their own physical state (p = 0.028). Moreover, the caregivers who concurred with patients in positive poor-prognosis disclosure preference were more likely to experience a better QoL (p < 0.05) and lower perceived stress levels (p = 0.048) in the III-IV stage subgroup. There was a significant discrepancy in poor-prognosis disclosure preference between cancer patients and caregivers in China. The caregivers' preference of concealing poor prognosis from patients was not related to cancer patients' QoL or perceived stress. In addition, caregivers had better QoL and lower stress levels when they held the same positive poor-prognosis disclosure preference as the patients. Copyright © 2015 John Wiley & Sons, Ltd.

Exploring the reciprocal relationship between caregiver burden and the functional health of frail older adults in China: A cross-lag analysis

The present study aimed to investigate the reciprocal relationship between caregiver burden and care recipient dependence in activities of daily living (ADLs) from the perspective of frail older adults and their family caregivers in China. Data were derived from a sample of 469 older adult–caregiver dyads that participated in both the 2010 and 2013 waves of the panel study Family Caregivers for the Frail and Very Elderly: Well-Being and Needs in Shanghai. A two-wave cross-lag analysis was used to examine the proposed model. ADL dependence in 2010 was a significant predictor of caregiver burden in 2013. Furthermore, caregiver burden in 2010 was a significant predictor of ADL dependence in 2013. This finding confirms the dyadic model of caregiver burden and care recipient well-being. Implications for interventions and policy to help frail older adults and their family caregivers are discussed.

Psycho-oncology assessment in Chinese populations: a systematic review of quality of life and psychosocial measures.

This systematic review describes psychosocial and quality of life (QOL) measures used in psycho-oncology research with cancer patients and caregivers in China. Medline and PsycINFO databases were searched (1980-2014). Studies reviewed met the following criteria: English language; peer-reviewed; sampled Chinese cancer patients/caregivers; developed, validated or assessed psychometric properties of psychosocial or QOL outcome measures; and reported validation data. The review examined characteristics of measures and participants, translation and cultural adaptation processes and psychometric properties of the measures. Ninety five studies met review criteria. Common characteristics of studies reviewed were they: assessed primarily QOL measures, sampled patients with breast, colorectal, or head and neck cancer, and validated existing measures (>80%) originating in North America or Europe. Few studies reported difficulties translating measures. Regarding psychometric properties of the measures >50% of studies reported subscale reliabilities <α=0.70, <50% reported test-retest reliability, and <30% reported divergent validity. Few reported sensitivity, specificity or responsiveness. Improved accuracy and transparency of reporting for translation, cultural adaptation and psychometric testing of psychosocial measures is needed. Developing support structures for translating and validating psychosocial measures would enable this and ensure Chinese psycho-oncology clinical practice and research keeps pace with international focus on patient reported outcome measures and data management.

The preference of place of death and its predictors among terminally ill patients with cancer and their caregivers in China.

To describe the preference of place of death among Chinese patients with cancer and their caregivers and to identify factors associated with the preference. A prospective questionnaire research was conducted in terminally ill patients with cancer and their caregivers. Questions included sociodemographic characteristics and information about patients' diseases and patients' preference of place of death. Home (53.64%) was the first choice for 522 patients, 51.34% of participated caregivers chose home as the preferred place of death, and patient-caregiver dyads achieved 84.10% agreement. Patients who lived in rural area, with lower education level and lived with relatives, expressed more preference to die at home. This study described information about the preference of place of death and its potential predictive factors in terminally ill patients with cancer in mainland of China.