Awareness, utilization and influencing factors of social supports for main informal caregivers of schizophrenia patients: a cross-sectional study in primary care settings in Beijing, China.
ABSTRACT: BACKGROUND:Most schizophrenia patients are supported by main informal caregivers at home in China. This study aims to investigate the further needs of social supports for main informal caregivers of schizophrenia patients and to analyze influencing factors on the awareness and utilization of social supports in Beijing. The results of this study could potentially act as reference for health professionals to implement appropriate and effective support programs. METHODS:A mixed-methods approach was used in this study. Awareness, utilization and influencing factors of social supports for main informal caregivers were investigated using questionnaires in 6 urban districts in Beijing. Meanwhile, individual in-depth interviews with 10 main informal caregivers from the urban districts of Beijing were conducted to identify the caregivers' perspective on social supports and their further needs. RESULTS:Quantitative results showed that although the government provided multi-channel resources for schizophrenia patients and their families, awareness and utilization of the resources such as rehabilitation and relevant subsidies were less than 10.0 and 5.0% respectively. Most caregivers in in-depth interviews expressed that they had negative experiences with respect to obtaining social supports, and they emphasized that more support would be needed in terms of financial support, respect, and rehabilitation institutions. CONCLUSIONS:The awareness and utilization of social supports are low for main informal caregivers of schizophrenia patients. More services and improved public attitudes are needed for schizophrenia patients and their caregivers.
Project description:<h4>Purpose</h4>Cancer threatens the social well-being of patients and their informal caregivers. Social life is even more profoundly affected in advanced diseases, but research on social consequences of advanced cancer is scarce. This study aims to explore social consequences of advanced cancer as experienced by patients and their informal caregivers.<h4>Methods</h4>Seven focus groups and seven in-depth semi-structured interviews with patients (n?=?18) suffering from advanced cancer and their informal caregivers (n?=?15) were conducted. Audiotapes were transcribed verbatim and open coded using a thematic analysis approach.<h4>Results</h4>Social consequences were categorized in three themes: "social engagement," "social identity," and "social network." Regarding social engagement, patients and informal caregivers said that they strive for normality by continuing their life as prior to the diagnosis, but experienced barriers in doing so. Regarding social identity, patients and informal caregivers reported feelings of social isolation. The social network became more transparent, and the value of social relations had increased since the diagnosis. Many experienced positive and negative shifts in the quantity and quality of their social relations.<h4>Conclusions</h4>Social consequences of advanced cancer are substantial. There appears to be a great risk of social isolation in which responses from social relations play an important role. Empowering patients and informal caregivers to discuss their experienced social consequences is beneficial. Creating awareness among healthcare professionals is essential as they provide social support and anticipate on social problems. Finally, educating social relations regarding the impact of advanced cancer and effective support methods may empower social support systems and reduce feelings of isolation.
Project description:Despite the existence of formal professional support services, informal support (mainly family members) continues to be the main source of eldercare, especially for those who are dependent or disabled. Professionals on the primary health care are the ideal choice to educate, provide psychological support, and help to mobilize social resources available to the informal caregiver.Controversy remains concerning the efficiency of multiple interventions, taking a holistic approach to both the patient and caregiver, and optimum utilization of the available community resources. .For this reason our goal is to assess whether an intervention designed to improve the social support for caregivers effectively decreases caregivers burden and improves their quality of life.CONTROLled, multicentre, community intervention trial, with patients and their caregivers randomized to the intervention or control group according to their assigned Primary Health Care Team (PHCT).Primary Health Care network (9 PHCTs).Primary informal caregivers of patients receiving home health care from participating PHCTs.Required sample size is 282 caregivers (141 from PHCTs randomized to the intervention group and 141 from PHCTs randomized to the control group.a) PHCT professionals: standardized training to implement caregivers intervention. b) Caregivers: 1 individualized counselling session, 1 family session, and 4 educational group sessions conducted by participating PHCT professionals; in addition to usual home health care visits, periodic telephone follow-up contact and unlimited telephone support.Caregivers and dependent patients: usual home health care, consisting of bimonthly scheduled visits, follow-up as needed, and additional attention upon request.Data analysisDependent variables: Caregiver burden (short-form Zarit test), caregivers' social support (Medical Outcomes Study), and caregivers' reported quality of life (SF-12)INDEPENDENT VARIABLES: a) Caregiver: sociodemographic data, Goldberg Scale, Apgar family questionnaire, Holmes and Rahe Psychosocial Stress Scale, number of chronic diseases. b) Dependent patient: sociodemographic data, level of dependency (Barthel Index), cognitive impairment (Pfeiffer test).If the intervention intended to improve social and family support is effective in reducing the burden on primary informal caregivers of dependent patients, this model can be readily applied throughout usual PHCT clinical practice.Clinical trials registrar: NCT02065427.
Project description:BACKGROUND: A couple of decades ago, hospitals or psychiatric institutions were in charge of caring for patients with schizophrenia; however, nowadays this role is performed by one or more patient's relatives. Evidence shows that informal caregivers experience negative changes in their quality of life (QOL). The aim of this study is to review the main factors associated with the QOL of caregivers of people with schizophrenia. METHODS: A search through databases from journals published last decade between 1998 and 2008 was performed. In accordance with the inclusion criteria, titles and abstracts of citations obtained from the search were examined independently by two authors and irrelevant articles discarded. The full text of those studies considered relevant by either reviewer were obtained and assessed independently. Where differences of opinion rose they were resolved by discussion. Out of the 258 references, 37 were included in the review. Studies which assessed factors associated with caregivers of people with schizophrenia's quality of life were included and the information summarized. RESULTS: Evidence suggest that physical, emotional and economic distress affect negatively caregiver's QOL as a result of a number of unfulfilled needs such as, restoration of patient functioning in family and social roles, economic burden, lack of spare time, among other factors. CONCLUSION: Decreased QOL may be associated with caregivers' burden, lack of social support, course of the disease and family relationships problems. In addition, in developing countries, QOL is affected by caregivers' economic burden. High quality research is needed in order to identify factors associated with QOL over time and testing the efficacy of interventions aiming to improve QOL in caregivers of patients with schizophrenia.
Project description:Background:Multiple sclerosis adult day programs (MSADPs) offer life-enhancing services for individuals and informal caregivers affected by multiple sclerosis (MS), including medical care, rehabilitation therapies, nutrition therapy, cognitive training, tailored education, exercise programs, and social interaction. The purpose of this study was to examine the effects of MSADPs on health-related quality of life (HRQOL) and health care utilization of persons with MS and HRQOL and well-being of informal caregivers. Methods:Using a quasi-experimental design, outcomes between baseline and 1-year follow-up in persons with MS and informal caregivers who used MSADP services and a comparison group of similar persons with MS and caregivers who did not use MSADP services were compared. For persons with MS, outcomes included standardized measures of physical and mental HRQOL and health care utilization. For caregivers, outcomes included physical and mental HRQOL and well-being. Changes in outcomes between baseline and follow-up were examined using propensity score-weighted difference-in-differences regression analysis. Results:For persons with MS, MSADP use had a significant positive effect on 12-Item Short Form Health Survey physical component scores, although the difference was not clinically meaningful. Use of MSADPs did not have effects on any other outcomes for persons with MS or caregivers. Conclusions:Use of MSADPs did not show a clinically meaningful effect on HRQOL for persons with MS or informal caregivers. The MSADPs do not seem to offer sustained benefits to persons with MS or caregivers, but the possibility of initial short-term benefits cannot be ruled out.
Project description:BACKGROUND: Female Community Health Volunteers (FCHVs) are considered service providers for major health problems at the community level in Nepal. However, few studies have been conducted about the roles of FCHVs from the users' perspective. This study sought to examine the current status of FCHV service utilization and identify the determinants of caregivers' utilization of FCHVs' health services in the mid-western region of Nepal. METHODS: This cross-sectional study targeted 446 caregivers of children under five years of age and whose children had ever fallen ill in the study village development committees (VDCs) of three districts of Nepal. Caregivers were asked about their usual health practices for childhood illness, health service utilization for childhood illness, children's health condition, satisfaction with health services, and socio-demographic status. Descriptive statistics and multiple logistic regression were used for analysis. RESULTS: Among 446 caregivers, 66.8% had never sought care from FCHVs for their children's illnesses in their lifetime, and more than 50% of them were unaware of FCHVs' services for acute respiratory infection and diarrhea. Among 316 caregivers whose child had an illness during the last seven months, 92.3% of them (n?=?293) did not take their child to FCHVs. The main reasons were the lack of medicine available from them and their incompetency in providing care. Among the 446 caregivers, those who participated in a mothers' group (n?=?82) were more likely to use FCHVs' services in their lifetime (AOR?=?3.23, 95% CI =1.81-5.76). CONCLUSIONS: Caregivers can gain benefit by using FCHV's health services, but a majority of the caregivers did not seek care from FCHVs due to its limited quality. Raising caregivers' awareness on FCHV is equally important at community level.
Project description:BACKGROUND:Paying attention to and improving the mental health of the informal caregivers of disabled elders has become a global public health priority. This study focused on low-income female Uyghur and Kazakh informal caregivers of disabled elders residing in China's far west. It investigated the prevalence of and the major related factors of depressive emotion. METHODS:A cross-sectional study was performed from September 2013 to January 2014 in Shawan Prefectures, Tuokexun Prefectures, Bole Prefecture and Urumchi city. Shawan Prefecture has the highest proportion of Kazakhs, whereas Tuokexun Prefectures, Bole Prefecture and Urumchi city have the highest proportion of Uyghurs in Muslim ethnic Uygur and Kazakh communities. Xinjiang Uyghur Autonomous Region is located in remote western China; this area is approximately 3,105 km (1,929 miles) away from Beijing. A total of 444 female Uyghur and Kazakh informal caregivers of disabled elders participated in this study. The self-rating depression scale, the Zarit burden interview, and the SF-36 questionnaire were used to evaluate the state of caregiver depression, caregiver burden, and quality of life (QOL), respectively. Statistical analyses were performed using multivariate logistic regression analyses, correlation with Spearman's rho and independent-sample t-tests; a P-value of <0.05 was considered statistically significant. RESULTS:Up to 38.5% (n = 217) of informal caregivers reported having depression, whereas 61.5% (n = 273) of them reported a lack of depression. Age of disabled elders more than 60 years old, total hours spent on caring daily?8h, duration of caring?5 years, negative self-evaluation of health condition, having caregiver burden, elders' medium degree of disability and elders' heavy degree of disability had a higher risk of caregiver depression. By contrast, daughter/daughter-in-law of disabled elders; unemployed carers, family's per capita income >US$235.48(1500 yuan), high social support, and high QOL of disabled elders were each associated with a lower risk of depressive emotion. Moreover, informal caregivers with depression obtained high care burden scores; at the same time, disabled elders who were looked after by caregivers with depression obtained low QOL scores. CONCLUSIONS:Our findings suggest that the demographics characteristics of informal caregivers, and caregiver burden, and the disabled elders' degree of disability and QOL had the most significant correlation with depressive emotion among women informal caregivers. The results had a enlighten that these variables should be considered while planning interventions to improve depression of informal caregivers.
Project description:BACKGROUND:In the European Union (EU), informal caregivers provide 60% of all care. Informal caregiving ranges from assistance with daily activities and provision of direct care to helping care recipients to navigate within complex healthcare and social services systems. While recent caregiver surveys document the impact of informal caregivers, systematic reviews show that they have unmet needs. Because of the political desire to reduce the length of hospital stays, older patients are discharged from the hospital 'quicker and sicker' than before. The transition between different levels of the healthcare system and the period after hospital discharge is critical for elderly patients. Caregivers' perspectives on the quality of older patients' care journeys between levels of the healthcare system may provide valuable information for healthcare providers and policymakers. This study aims to explore older patient's informal caregivers' views on healthcare quality in the hospital and in the first 30?days after hospitalisation. METHOD:We conducted semi-structured individual interviews with 12 participants to explore and describe informal caregivers' subjective experiences of providing care to older relatives. The interviews were then transcribed and analysed thematically. RESULTS:The analysis yielded the overarching theme 'Informal caregivers - a health service alliance - quality contributor', which was divided into four main themes: 'Fast in, fast out', 'Scant information', 'Disclaimer of responsibility' and 'A struggle to secure professional care'. The healthcare system seemed to pay little attention to ensuring mutual understandings between those involved in discharge, treatment and coordination. The participants experienced that the healthcare providers' main focus was on the patients' diseases, although the health services are supposed to view patients holistically. CONCLUSION:Based on the information given by informal caregivers, health services must take into account each person's needs and preferences. To deliver quality healthcare, better coordination between inter-professional care teams and the persons they serve is necessary. Health professionals must strengthen the involvement of caregivers in transitions between care and healthcare. Future work should evaluate targeted strategies for formal caregivers to cooperate, support and empower family members as informal caregivers.
Project description:BACKGROUND:This paper describes the Co-Care-KIT, a reflective toolkit designed to provide insights into the diverse experiences of home-based informal caregivers during the delivery of care to a relative or loved one. OBJECTIVE:The aim of this study was to evaluate the toolkit, including a custom-designed journal, tools for photography-based experience sampling, and heart rate tracking, which enables caregivers to collect and reflect on their positive and negative daily experiences in situ. METHODS:A 2-week field study with informal caregivers (N=7) was conducted to evaluate the Co-Care-KIT and to capture their daily personal emotional experiences. The collected data samples were analyzed and used for collaborative dialogue between the researcher and caregiver. RESULTS:The results suggest that the toolkit (1) increased caregivers' awareness of their own well-being through in situ reflection on their experiences; (2) empowered caregivers to share their identities and experiences as a caregiver within their social networks; (3) enabled the capturing of particularly positive experiences; and (4) provided caregivers reassurance with regards to their own mental health. CONCLUSION:By enabling capturing and collaborative reflection, the kit helped to gain a new understanding of caregivers' day-to-day needs and emotional experiences.
Project description:BACKGROUND:Despite a large literature on the stress process, little attention has focused on how caregivers for persons living with dementia (PLWDs) provide care and how this may impact care outcomes. Criticism is a management strategy caregivers may use to respond to behavioral symptoms. We consider whether criticism is associated with caregivers' mental health and service utilization. METHODS:Data are drawn from the Advancing Caregiver Training intervention study including 256 informal caregivers living with a PLWD. In multiple linear regressions controlling for caregivers' demographics and PLWDs' clinical factors, we consider criticism (criticism subscale of the Dementia Management Strategies Scale) as a predictor of caregiver burden, depressive symptoms, desire to institutionalize the PLWD, level of frustration with care, and the number of home-based, social, and health services utilized. RESULTS:On average, 15% of the sample sometimes reported using criticism as a management strategy to manage the challenges of care. Greater use of criticism was associated with significantly more caregiver burden (? = 0.26, P < 0.001) and frustration with caregiving (? = 0.66, P < 0.001), but not depressive symptoms or a desire to institutionalize the PLWD. Criticism was also associated with significantly greater utilization of home-based (? = 0.14, P < 0.05) and social services (? = 0.15, P < 0.05), but not health care services. CONCLUSION:Criticism appears to be used by more burdened and frustrated caregivers. The association of criticism with social and home-based services potentially reflects a need for greater support among this group of caregivers. Behavioral interventions that can help caregivers manage behavioral symptoms with positive, empirically validated strategies may be helpful.
Project description:BACKGROUND:Cancer survivors and their informal caregivers (family members, close friends) often experience significant impairments in health-related quality of life (HRQOL), including disruptions in psychological, physical, social, and spiritual well-being both during and after primary cancer treatment. The purpose of this in-progress pilot trial is to determine acceptability and preliminary efficacy (as reflected by effect sizes) of CBCT® (Cognitively-Based Compassion Training) compared with a cancer health education (CHE) attention control to improve the primary outcome of depressive symptoms and secondary outcomes of other HRQOL domains (e.g., anxiety, fatigue), biomarkers of inflammation and diurnal cortisol rhythm, and healthcare utilization-related outcomes in both cancer survivors and informal caregivers. METHODS:Forty dyads consisting of solid tumor survivors who have completed primary treatments (chemotherapy, radiation, surgery) and their informal caregivers, with at least one dyad member with ? mild depressive symptoms or anxiety, will be recruited from Tucson, Arizona, USA. Survivor-caregiver dyads will be randomized together to complete either CBCT or CHE. CBCT is a manualized, 8-week, group meditation-based intervention that starts with attention and mindfulness and builds to contemplative practices aimed at cultivating compassion to the self and others. The goal of CBCT is to challenge unexamined assumptions about feelings and behaviors, with a focus on generating spontaneous self-compassion and increased empathic responsiveness and compassion for others. CHE is an 8-week, manualized group intervention that provides cancer-specific education on various topics (e.g., cancer advocacy, survivorship wellness). Patient-reported HRQOL outcomes will be assessed before, immediately after (week 9), and 1?month after CBCT or CHE (week 13). At the same time points, stress-related biomarkers of inflammation (e.g., plasma interleukin-6) and saliva cortisol relevant for survivor and informal caregiver wellness and healthcare utilization will be measured. DISCUSSION:If CBCT shows acceptability, a larger trial will be warranted and appropriately powered to formally test the efficacy of this dyadic intervention. Interventions such as CBCT directed toward both survivors and caregivers may eventually fill a gap in supportive oncology care programs to improve HRQOL and healthcare utilization in both dyad members. TRIAL REGISTRATION:Clinicaltrials.gov, NCT03459781 . Prospectively registered on 9 March 2018.