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Obot, Stella S. "Health Care Disparities and Chronic Disease Burden: Policy Implications for NGOs." Digital Archive @ GSU, 2010. http://digitalarchive.gsu.edu/iph_theses/88.
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The purpose of this capstone is to develop a program to address health literacy among African American adults. The social cognitive theory and the health belief model was used to create a model of an age appropriate, culturally sensitive program with a pre and post test to improve the health literacy in this population. The Community Health Literacy Improvement Program (CHIP) is a pilot program that will consist of a four week didactic intervention focused on combating prose, document, and quantitative health illiteracy. This program will be implemented through a community based nonprofit organization. Participants who complete the CHIP program will be able to identify risk factors for chronic diseases, assess their ability to avoid chronic diseases, and be able to locate community health resources. This proposed intervention will show that community based nonprofit organizations have an important role to play in building community buy in and establishing the agency necessary for community based, culturally sensitive programs such as CHIP to succeed.
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Caicedo, Carmen. "Children with Special Health Care Needs: Comparison of the Effects of Home Care Setting, Prescribed Pediatric Extended Care Setting, and Long-Term Care Setting on Child and Family Health Outcomes and Health Care Service Use." FIU Digital Commons, 2013. http://digitalcommons.fiu.edu/etd/844.
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Technological advances during the past 30 years have dramatically improved survival rates for children with life-threatening conditions (preterm births, congenital anomalies, disease, or injury) resulting in children with special health care needs (CSHCN), children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who require health and related services beyond that required by children generally. There are approximately 10.2 million of these children in the United States or one in five households with a child with special health care needs. Care for these children is limited to home care, medical day care (Prescribed Pediatric Extended Care; P-PEC) or a long term care (LTC) facility. There is very limited research examining health outcomes of CSHCN and their families. The purpose of this research was to compare the effects of home care settings, P-PEC settings, and LTC settings on child health and functioning, family health and function, and health care service use of families with CSHCN. Eighty four CSHCN ages 2 to 21 years having a medically fragile or complex medical condition that required continual monitoring were enrolled with their parents/guardians. Interviews were conducted monthly for five months using the PedsQL TM Generic Core Module for child health and functioning, PedsQL TM Family Impact Module for family health and functioning, and Access to Care from the NS-CSHCN survey for health care services. Descriptive statistics, chi square, and ANCOVA were conducted to determine differences across care settings. Children in the P-PEC settings had a highest health care quality of life (HRQL) overall including physical and psychosocial functioning. Parents/guardians with CSHCN in LTC had the highest HRQL including having time and energy for a social life and employment. Parents/guardians with CSHCN in home care settings had the poorest HRQL including physical and psychosocial functioning with cognitive difficulties, difficulties with worry, communication, and daily activities. They had the fewest hours of employment and the most hours providing direct care for their children. Overall health care service use was the same across the care settings.
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Snow-Spracklin, Elizabeth G. "Caregivers' perception of health, burden, social support, and care receiver problems." Thesis, National Library of Canada = Bibliothèque nationale du Canada, 1998. http://www.collectionscanada.ca/obj/s4/f2/dsk2/tape17/PQDD_0014/MQ36179.pdf.
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Okwori, Glory, Elaine Loudermilk, Steven Stewart, Delaney Lawson, and Megan Quinn. "Health Care Burden and Expenditure Associated with Adverse Childhood Experiences in Tennessee and Virginia." Digital Commons @ East Tennessee State University, 2021. https://dc.etsu.edu/asrf/2021/presentations/72.
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Introduction: Adverse childhood experiences (ACEs) have been considered a significant risk factor for poorer adult outcomes. Considering the studies linking ACEs to chronic diseases in adulthood as well as the increasing prevalence for these chronic conditions, exposure to childhood traumas represents a significant economic burden in the United States which has not been explored. This study provides the first examination of the attributable burden and costs of conditions associated with exposure to ACEs in Tennessee (TN) and Virginia (VA) during 2017.
Methods: This is a cross-sectional study of individuals aged 18+ having exposure to ACEs using Behavioral Risk Factor Surveillance System (BRFSS) data for TN and VA in 2017. Eight chronic diseases (asthma, obesity, hypertension, diabetes, chronic obstructive pulmonary disease (COPD), depression, cardiovascular disease, and arthritis ) and two risk factors (smoking and drinking ) associated with ACEs were analyzed. Pearson's chi-square tests analyzed the association between individuals exposed to ACEs and the risk factors with the chronic diseases. The population attributable risk (PAR) were estimated for the ACEs related diseases and risk factors. These estimates were combined with published estimates of health care expenses and Disability Adjusted-Life-Years (DALYs).
Results: Among those who had experienced at least 1 ACE in TN, 10% had COPD, 17% had diabetes, 36% had obesity, and 30% had depression. Individuals who had experienced at least 1 ACE in VA had higher percentages for COPD, obesity and depression diseases compared to those who had no ACE (p< .0001). ACEs exposure resulted in a burden of about 115,00 years and 125,000 years in terms of DALYs in TN and VA respectively. The total health spending associated with ACEs based on PARs was about $650 million ($158.15 per adult) and $942 million ($305.02 per adult) in TN and VA respectively. Depression accounted for the largest combined sum of health care spending (TN - $448,105,983, VA – $633,225,398). With DALYs valued at $235,855 in 2017 dollars, the monetized cost of DALYs attributable to ACEs was over $27 billion, $6615 per exposed adult Tennessean. The monetized loss due to DALYs represents over $30 billion (in 2017 dollars) , $9,737 per exposed adult in Virginia.
Conclusions: This study emphasizes the need to reduce ACEs which can be utilized to inform interventions to reduce the impact of ACEs in Tennessee and Virginia. Medical conditions attributable to childhood traumas can result in increased utilization of hospital services, psychiatric care, as well as care related to chronic conditions, which includes increased primary and specialty care utilization as well as the cost of medications. While medical expenses represent a significant burden, reduced quality of life resulting from ACE attributable conditions also represents a burden in disability adjusted life years (DALYs) and premature morbidity. As resources are limited and the burden of ACEs shown here is very high, there is the need for a wide range of prevention and treatment strategies to mitigate these effects.
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Plange-Kaye, Elizaebth. "Caregivers' Burden| A Phenomenological Study of the Lived Experiences of Informal Caregivers." Thesis, University of Phoenix, 2018. http://pqdtopen.proquest.com/#viewpdf?dispub=10744463.
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ABSTRACT The current increase in the population of older adults has created a high demand for more informal caregivers. Informal caregivers complain of many problems in providing care including psychological stresses and anxieties, as well as physical, emotional, financial, and other social burdens. The purpose of this phenomenological study was to understand and describe the essence of the lived experiences of informal caregivers. The study was also intended to make health professionals and policy makers aware of such problems. The study adopted a qualitative methodology and a hermeneutical phenomenological design. Purposeful sampling was used in selecting participants with informal caregiving experience. Eleven informal caregivers were interviewed via telephone for data collection. Data was analyzed using Nvivo 11 for the identification and description of patterns and themes from the perspectives of participants. Eight themes that emerged from data analysis were: (a) Gender, many females engaging in caregiving, (b) Caregivers feeling stressful, (c) Love played a crucial role in caregiving, (d) Need for training for caregivers, (e) Being cared for by loved family members, (f) Impacts on job performance, (g) Living arrangements between caregiver and care receiver, and (h) Lack of support from family, community or state agencies. The conclusions focused on the need for support to informal caregivers such as caregiver training, adult day care services, care leave or respite care, increased access to services, care payments, and expansion in the informal caregiver workforce.
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Bigatti, Silvia Marcela. "Relationships between perceived burden, physical health, and health care use among spouses of people with fibromyalgia syndrome /." Diss., Connect to a 24 p. preview or request complete full text in PDF format. Access restricted to UC campuses, 2000. http://wwwlib.umi.com/cr/ucsd/fullcit?p9970686.
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Moorman, Jonathan P., Matthew R. Krolikowski, Stephanie M. Mathis, and Robert P. Pack. "HIV/HCV Co-infection: Burden of Disease and Care Strategies in Appalachia." Digital Commons @ East Tennessee State University, 2018. https://dc.etsu.edu/etsu-works/2766.
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Purpose of Review: The purpose of this review is to address infection with HIV and hepatitis C in the Appalachian region of the USA and the driving forces underlying this epidemic. We seek to discuss epidemiology of disease and the possible interventions to reduce incidence and burden of disease in this resource-limited area.
Recent Findings: The rise of the opioid crisis has fueled a rise in new hepatitis C infection, and a rise in new HIV infection is expected to follow. Injection drug use has directly contributed to the epidemic and continues to remain a risk factor. Men who have sex with men remains a significant risk factor for HIV acquisition as well.
Summary: Progress has been made in the battle against HIV and, to a lesser extent, hepatitis C, but much more can be done. Limited data on co-infection with HIV/HCV are currently available for this at-risk region, but it is clear that Appalachia is highly vulnerable to co-infection outbreaks. A multipronged approach that includes advances in assessment of co-infection and education for both patients and clinicians can help to recognize, manage, and ideally prevent these illnesses.
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Neethling, Ian. "Enhancing the use of burden of disease information for health sector decision making." University of the Western Cape, 2019. http://hdl.handle.net/11394/6930.
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O'Donovan, Simon Terence. "Dementia caregiving : burden and breakdown." Thesis, University of South Wales, 2004. https://pure.southwales.ac.uk/en/studentthesis/dementia-caregiving(34088905-f406-4d82-bc09-aeed052f5e3c).html.
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This study was an investigation of the phenomenon of dementia caregiving burden and breakdown in community caregiving situations. 109 carer subjects participated in the study, with 91 current carers - 17 via face-to-face interview and 74 via the internet, and 18 past carers - two via face-to-face interview and 16 via the internet, contributing their experiences of dementia caregiving. Two new carers' assessment tools were devised to meet more fully the requirements of the 'Carers (Recognition and Services) Act 1995' (DoH, 1995), namely the 'Dementia Caregiving Problems Questionnaire (DCPQ)' and 'Dementia Caregiving Burden Questionnaire (DCBQ)'. These new assessments were tested and demonstrated to be reliable, with Cronbach Alpha scores of 0.7029 and 0.8430 respectively, and are recommended for implementation in clinical practice. The key predictive risk factors for high caregiving burden in this study were perceived stress; omission of caregiving satisfactions; carer depression; perceived impact on quality of life; perceived helpfulness of community care services; behaviour problems - especially shouting, swearing and screaming, irritability and night disturbance; poor quality carer/dependant relationship; mood problems; perceived helpfulness of informal support; perceived impact of caregiving on dependant emotional well-being and, to a lesser extent, hours spent in caregiving. The key predictive risk factors for expected relinquishment of home caregiving were DCBQ score; perceived impact on quality of life; perceived stress; carer depression and, to a lesser extent, geographical distance in caregiving; perceived helpfulness of community care services and omission of positive feelings in the carer. Based on the above risk factors, a new 'Dementia Caregiving Breakdown Risk Assessment Tool (DCBRAT)' is proposed for use by community care managers to identify 'at risk' caregiving situations so that service interventions can be targetted more towards carers who are highly burdened in their role, who are at risk of developing psychological health problems or who may be nearing breakdown in their caregiving situation. Thus the effectiveness of service interventions may be maximised and optimal health gain for carers achieved, resulting in improved outcomes for people with dementia. The DCBRAT and the similarly proposed 'Conceptual Model of Dementia Caregiving, Burden and Breakdown' will need to be further tested in post-doctoral research.
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Carter, Angela Joy Wilhelmina. "Sharing the burden : a study of teamwork and well-being in secondary health care teams." Thesis, University of Sheffield, 2000. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.324455.
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Skelton, Stephanie B. "Health Care Burden of Adoptive and Biological Parents of Children with Cleft Lip and Palate." University of Cincinnati / OhioLINK, 2012. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1337888323.
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Sang, Hilla I. "National Estimates and Complex Sample Regression Modeling of the Financial Burden of Health Care Among the U.S. Nonelderly Population." Kent State University / OhioLINK, 2019. http://rave.ohiolink.edu/etdc/view?acc_num=kent1563283247018918.
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Yakubu, Yakubu A. "The relationship between environmental health status, the attributes of female caregivers and the health status of care recipients in low-income areas in Cape Town, South Africa." Thesis, Cape Peninsula University of Technology, 2016. http://hdl.handle.net/20.500.11838/2885.
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Thesis (DPhil (Environmental Health))--Cape Peninsula University of Technology, 2016.Informal caregivers play an important role in the well-being of dependent members in a household. The burdens of these caregivers are multiple and pervasive and may contribute to mental health epidemiology as a result of worry, grief, anxiety and stress. The literature review revealed that studies in caregiving and its various facets began from a pragmatically applied interest rather than from theoretical and intellectual curiosity. The majority of the research on caregiver burden involves meta-analysis of qualitative studies with little quantitative research. Also, many of these studies are concentrated on caregivers of chronically ill patients, such as those suffering from dementia, Alzheimer’s disease, and heart disease, without much attention to care burden resulting from caring for those who are not necessarily ill. Similar studies by other researchers did not consider the impact of the physical health of the care recipients or the environmental factors that are critical in the study of female caregiver burden in low-income settings. In addition, existing studies did not adequately evaluate the many potential factors that may vary and influence the lives of the caregivers, especially in a single, comprehensive model. This study attempted to provide a more complete picture of these relationships in low-income and culturally diverse settings. The study population consisted of black/African and coloured populations living in subsidised or low-cost housing settlements. In each of the two different cultural communities, 100 black/African and 100 coloured female caregivers were selected through a systematic random sampling procedure. In addition, data were also collected from caregivers in Tamale, Ghana to assess differences between the socio-demographic profiles of the caregivers in Cape Town, South Africa and Tamale, Ghana. The theoretical paradigm used in this study is the Stress Process Model by Pearlin et al., (1990). The study instrument assessed caregiver burden with both objective and subjective measures through the use of a fully structured questionnaire. The information that was collected according to the constructs of the Stress Process Model included personal and role strains and incorporated the physical health of the care recipients and environmental factors such as kitchen and toilet hygiene. Inclusion criteria for the respondents in both Cape Town and Tamale were the principal female caregivers who were present, willing, and able to give informed consent. The Statistical Package for Social Sciences (SPSS Version 22) was used for the analyses. The Chi-square test was used to assess the relationships between environmental health, the socio-demographics of the female caregivers and the health status of the care recipients. The hierarchical regression analysis in the form of a General Linear Model was used to model caregiving burden. iv The results showed that the majority of the female caregivers were in the age group 40 – 49 years and in both Cape Town and Tamale, a large proportion was in the low-income group. Also, the majority of the informal caregivers in the two samples were in care tasks as a full-time job, providing more than 40 hours of care per week. Regarding the length of time in caregiving, a large proportion of the caregivers in both Cape Town and Tamale had been in the care role for more than three years preceding the survey, and almost all the caregivers in the Cape Town sample (98.4%) did not use any form of caregiving programme to ameliorate the negative effects of caregiving. Further, the results showed statistically significant relationships between the socio-demographic characteristics of female caregivers (age, education, population group and income status) and the diarrhoea status of the care recipients. Also, a significant relationship was shown between environmental health variables of the home (kitchen hygiene and toilet hygiene) and the physical health of the care recipients. The major predictors of female caregiver burden in the samples were the physical health of the care recipients and access to social grants. On the basis of the analyses, it was recommended that the government should recognise the importance of the physical health of the care recipients and increase the amounts of social grants to the caregivers since this could improve the circumstances of both the caregivers and the care recipients. In addition, this could aid in improving the standard of living of caregivers in these households. Future research in similar settings should disaggregate the data to compare the burden of caring for caregivers of physically strong care recipients with physically ill care recipients.
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McDonald, Kate. "Transitions to Adulthood for Children with Special Health Care Needs." Diss., The University of Arizona, 2011. http://hdl.handle.net/10150/202697.
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Background: Every year in the United States approximately half a million youth with special health care needs (SHCN) turn 18. Little is known about how this population fares during the transition to adulthood. Purpose: To examine transitions to adulthood for young adults with SHCN. Methods: Using data from two national longitudinal surveys: the Panel Study of Income Dynamics and the Survey of Adult Transitions and Health, I built linear and logistic regression models to evaluate the relationship between having a history of SHCN during childhood and key transitional outcomes during young adulthood (e.g., mental health status, educational attainment, employment, financial independence and subjective indicators of adulthood). A second set of logistic models examined associations between hypothesized risk and protective factors during childhood (e.g. family financial burden, care in a medical home and access to adequate insurance) and physical health outcomes during young adulthood for youth with SHCN. Multivariate models were adjusted for key confounders. Results: The majority of youth with a history of SHCN were doing well during the transition to adulthood. That said, compared to young adults without a history of SHCN, young adults with a history of SHCN were in significantly worse mental health (adjusted OR of experiencing a non-specific psychological disorder 3.90, 95% CI 1.78-8.53) and had significantly lower odds of graduating from high school (adjusted OR 0.55, 95% CI 0.32-0.96), attending college (adjusted OR 0.61, 95% CI 0.38-0.96), and receiving financial assistance from their families (adjusted OR 0.56, 95% CI 0.38-0.83). Amongst young adults with a history of SHCN, family financial burden during childhood significantly decreased the odds of being in good physical health during the transition to adulthood. There was limited evidence that receipt of care in a medical home or access to adequate insurance during childhood increased the odds of being in good physical health for young adults with a history of SHCN. Conclusions: These findings have important policy implications for programs serving youth with SHCN. Specifically, mental health and educational services may need to be expanded and more emphasis placed on addressing the non-medical determinants of health, like family financial burden.
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Goeiman, Hilary Denice. "Developing a comprehensive nutrition workforce planning framework for the public health sector to respond to the nutrition-related burden in South Africa." University of the Western Cape, 2018. http://hdl.handle.net/11394/6900.
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Philosophiae Doctor - PhDSouth Africa has not responded well to recommendations in national evaluation reports to address human resource challenges associated with the implementation of nutrition programmes and improved service delivery. Twenty-four years have passed since the dawning of democracy and the nutrition situation within the population has actually deteriorated, with persistently high levels of stunting in young children and the growing prevalence of overweight and obesity in all age groups. These conditions not only rob people of their potential, but they carry a high cost for the state and society as a whole. This study aimed to develop a comprehensive and empirically sound nutrition workforce development planning framework for the public health sector so that it is better equipped to address the nutrition-related burden of disease in South Africa. The study explored the provision of nutrition services in South Africa, focusing on the nutrition-specific work components of health personnel ‒ doctors, nurses, dietitians, nutritionists, health promoters and community health workers working at the primary health care level in the public health sector. Evidence-based workforce information was collected through a mixed methodology comprising: literature reviews, document reviews, analysis of scopes of practice, job descriptions, competencies, workforce surveys, key informant interviews and consensus assessments through the application of the Delphi technique. Permission was obtained to adapt and use questionnaires from an Australian workforce study. Ethical approval, permission to conduct the study and informed consent were obtained prior to the commencement of the interviews. Data was then analysed using descriptive statistics, content and thematic analysis and triangulation of all findings, followed by consensus assessments to describe the nutrition workforce and delineate the roles and functions thereof. The comprehensive planning framework that was developed was applied to the Western Cape province.
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Scheepers, Lorna Lorraine. "An exploratory study of the referral pathway of patients discharged from a tertiary hospital to home-based care in the Western Cape." University of the Western Cape, 2012. http://hdl.handle.net/11394/4628.
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Magister Curationis - MCurThe purpose of the study will be to explore the discharge referral pathway for patients that have been discharged from hospital to home in the Western Cape Province. A mix of quantitative and qualitative research, using a descriptive design will be undertaken. Quantitatively, following the patient paper trail from Tertiary Hospital to grassroots level. Qualitatively, to identify whether the referral pathway was user friendly. Records of discharged patients from the Tertiary Hospital will be used as the study population. Patient information will be accessed from patient files at the hospital. Interviews will be conducted with the relevant discharge liaison officers at the Tertiary Hospital, and Primary Health Care level. Relevant staff members within the non–governmental –organisations (NGOs), will also be interviewed in order to determine their perception of the discharge referral pathway. The findings of the study will be used to inform policy guidelines. Challenges encountered by staff members in referring patients for continuum of care, and the perception of consumers will also be described and documented.
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Shaunfield, Sara Lynn. "“IT’S A VERY TRICKY COMMUNICATION SITUATION": A COMPREHENSIVE INVESTIGATION OF END-OF-LIFE FAMILY CAREGIVER COMMUNICATION BURDEN." UKnowledge, 2015. http://uknowledge.uky.edu/comm_etds/43.
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Family caregivers encounter immense negative consequences including decreased quality of life and increased rates of morbidity and mortality that stem from physical burdens, emotional distress, depression, social isolation, and loss of financial security. Although communication is an important aspect of caregiving, communication tasks are reportedly difficult for end-of-life family caregivers. The goal of this study was to explore the variety of communication stressors experienced by end-of-life family caregivers to gain insight into the communication tasks caregivers perceive as most difficult and the reasons why.
Qualitative data was achieved through in-depth, face-to-face interviews with 40 caregivers currently providing care for a family member diagnosed with Alzheimer’s disease and related dementias (n=20; ADRD) and Glioblastoma (n=20; brain tumor [GBM]). A grounded theory approach was employed to gain insight into end-of-life family caregiver communication experiences. The results revealed that communication is perceived as a burden for end-of-life family caregivers. Not only does communication burden exist, end-of-life family caregivers experience immense tension and stress regarding a variety of relational contexts when communicating with the care recipient, others (family, friends), and clinicians. The results further revealed that communication burden stems from the caregiver’s attempt to negotiate between two opposing extremes: a desire to protect the patient and others versus a need to protect oneself. Thus, internal tension occurs when end-of-life family caregivers contemplate whether and how to engage in difficult conversations, and then again when following through. The presence of these contradictory tensions induced the emergence of barriers and therefore communication burden within various aspects of the end-of-life caregiver experience.
Added insight into communication burden was achieved through a supplementary scale development study in a sample of ADRD and oncology end-of-life caregivers (N=263), which revealed communication burden as significantly associated with caregiver burden and quality of life. Implications for the advancement of interpersonal and health communication theory as well as practical tailored interventions targeting end-of-life family caregivers are discussed.
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Wagner, Ryan G. "The Burden of Epilepsy : using population-based data to define the burden and model a cost-effective intervention for the treatment of epilepsy in rural South Africa." Doctoral thesis, Umeå universitet, Epidemiologi och global hälsa, 2016. http://urn.kb.se/resolve?urn=urn:nbn:se:umu:diva-120163.
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Rationale Epilepsy is a common, chronic, neurological condition that disproportionately affects individuals living in low- and middle- income countries, including much of sub-Saharan Africa. Epilepsy is treatable, with the majority of individuals who take anti-epileptic drugs experiencing a reduction, or elimination, of seizures. Yet the number of individuals taking and adhering to medication in Africa is low and interventions aimed at improving treatment are lacking. Aims To define the epidemiology of convulsive epilepsy in rural South Africa in terms of incidence, mortality and disability-adjusted life years; to determine outpatient, out-of-pocket costs resulting from epilepsy treatment; to establish the level of adherence to anti-epileptic drugs amongst people with epilepsy; and, to determine whether the introduction of routine visits to people with epilepsy by community health workers is a cost-effective intervention for improving adherence to anti-epileptic drugs. Methods Nested within the Agincourt Health and Demographic Surveillance System, this work utilized a cohort of individuals diagnosed with convulsive epilepsy in 2008 to determine health care utilization and out-of-pocket costs due to care sought for epilepsy. Additionally, using blood samples from the cohort, anti-epileptic drug adherence was measured and, following the cohort, mortality rates were determined. Using these collected epidemiological parameters, disability-adjusted life years due to convulsive epilepsy were determined. Finally, combining the epidemiological and cost parameters, a community health worker intervention was modeled to determine its incremental cost-effectiveness ratio. Key Findings The burden of convulsive epilepsy is lower in rural South Africa than other parts of Africa, likely due to lower levels of known risk factors. Yet the burden, especially in terms of mortality, remains high, as does the treatment gap and health care utilization. Findings from the economic evaluation found the introduction of a community health worker to be highly cost-effective and would likely lower the burden of epilepsy in rural South Africa. Implications Epilepsy contributes to the burden of disease in rural South Africa, with high levels of mortality and a substantial treatment gap. The introduction of a community-health worker is likely to be one cost-effective, community based intervention that would lower the burden of epilepsy by improving adherence to anti-epileptic drugs. Implementing this intervention, based on these findings, is a justified and important next step.
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Ågren, Susanna. "Supportive care for patients with heart failure and their partners : A descriptive and interventional study." Doctoral thesis, Linköpings universitet, Omvårdnad, 2010. http://urn.kb.se/resolve?urn=urn:nbn:se:liu:diva-56232.
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Background: Having the support of a partner is essential for both health related quality of life and survival in heart failure patients. However, caring for a patient with heart failure may affect the health related quality of life, well‐being and cause a burden for the partner. The partner is expected to be responsible for the care, which may have consequences for the heart failure patient’s long‐term health and well‐being. Further research to determine health related quality of life, well‐being, caregiver burden and needs of partners is warranted as well as studies evaluating interventions targeting patient‐partner dyads. Aim: The overall aim was to describe how the life situation of patient‐partner dyads was influenced by heart failure and to determine the effects of an intervention of follow‐up with education and psychosocial support for patient‐partner dyads. Design and methods: The thesis is based on three quantitative studies and one qualitative study. The first two studies were descriptive and included 135 dyads (patient‐partner) (I, II) and the randomised intervention study included a total of 155 dyads (IV). The qualitative study had a grounded theory approach. Thirteen partners were interviewed and data analysed using constant comparative method (III). Results: Caregiver burden was perceived as moderate in 30% of the partners and the rest experienced a low caregiver burden. The patients’ physical component score of SF‐36, partners’ mental component score of SF‐36 and perceived control explained 39% of the caregiver burden (I). Patients had lower health related quality of life compared to their partners in all dimensions except in the mental health domain of SF‐36 and lower qualityadjusted life year weights compared to their partners. Mental health scores were lower in partners compared to age and gender‐matched references. All other health related quality of life scores and the quality‐adjusted life year weights were comparable between the partners and the reference group. Patients had more depressive symptoms than their partners. There was no difference in the level of perceived control or knowledge about chronic heart failure between patients and partners (II). During grounded theory analysis confirmation was identified as describing the core category of the partners’ individual needs. The core category theoretically binds together three underlying subcategories: security, rest for mind and body, and inner strength. Confirmation facilitated acceptance and improvement of mental and physical health among partners (III). At the three month follow‐up the dyad‐intervention had improved perceived control in patients, but not in the partners. There were no other significant differences in the control and intervention group with regard to the dyads’ health related quality of life and symptoms of depression. There were also no differences in the patients’ self‐care behaviour and partners’ experiences of caregiver burden (IV). Conclusions and implications: Partners to patients with chronic heart failure are at risk of decreased mental well‐being. One third of the partners experienced a moderate caregiver burden and was therefore at a higher risk of poor mental health and decreased perceived control. During short‐term follow‐up the intervention with education and psychosocial support to dyads (patient‐partner) improved the level of perceived control in the chronic heart failure patient group. By identifying partnersʹ needs for security, rest for mind and body, and inner strength, healthcare professionals can confirm these needs throughout the caring process, from the critical care period and throughout rehabilitation at home. Interventions targeting dyads have been limited in previous research. Partners need to be prepared regarding the disease process, the daily regimen, hopes for the future and responsible care providers. They also need to be confirmed because they are vital to the patients’ recovery. Further, the effects of the intervention study should also include a long‐term follow‐up as well as an evaluation of the health‐economic perspective including direct and indirect costs of care.
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Lam, Chi-wai, and 林智偉. "An exploratory and comparative study of the stress burden and coping strategies of caregivers of people with schizophrenia in Guangzhou andHong Kong." Thesis, The University of Hong Kong (Pokfulam, Hong Kong), 2004. http://hub.hku.hk/bib/B31245481.
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Franzén, Irene. "Vad innebär det att må bra och att stärka hälsan som anhörigvårdare?" Thesis, Linnéuniversitetet, Institutionen för hälso- och vårdvetenskap, HV, 2011. http://urn.kb.se/resolve?urn=urn:nbn:se:lnu:diva-17645.
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Forskning visar att anhörigvårdaren upplever glädje och närhet tillsammans med närstående trots bördor. Syftet med studien var att belysa vad det innebar att må bra och att stärka hälsan som anhörigvårdare. Intervjuer med fem anhörigvårdare genomfördes. Analysen gjordes med kvalitativ innehållsanalys. Huvudtemat beskrevs som en process mot helhet och hälsa. Inre nycklar till stärkt hälsa innebar en ökad kunskap och därmed ökad förståelse för sig själv, närstående och andra. När anhörigvårdarens förståelse växte fram använde hon parallellt avkopplingen, vårdandet av sig själv, naturen samt kreativitet som nycklar. Få känna glädje och göra roliga saker själv och tillsammans med närstående var betydelsefullt. Inre nycklar var också mening och hopp, att få vara självständig samt att hantera vardagen. Yttre nycklar till stärkt hälsa innebar att relationen mellan anhörigvårdare och närstående var betydelsefull. Innebörden i detta var att ha gemensamma minnen samt roligt tillsammans. Ett socialt nätverk med familj, vänner och kommunens service som stöd var centralt. Studien har betydelse för förståelse för anhörigvårdarens hälsa. Slutsatsen blir att trots ett tungt ansvar så uppfattar anhörigvårdaren att hon med inre och yttre stöd har möjlighet att bevara sin hälsa.
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Chalmers, Sharon Waits. "The Impact of Chronic Stress on the Self-care Practices of Hispanic Diabetic Caregivers." Digital Archive @ GSU, 2009. http://digitalarchive.gsu.edu/nursing_diss/10.
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Caregivers (CG) often neglect their own self-care which may have deleterious effects if CG have a chronic illness, such as diabetes. Care demands have been linked to CG health, although the mechanisms are unclear. The purpose of this study was to examine the relationships of CG stress, depressive symptoms, and diabetes self-care practices on CG physical health (PH) and glycemic control (GC) in an underrepresented group of Hispanic CG with diabetes. A correlational design was used in a non-random sample of 42 Hispanic CG with diabetes (Type I or II) recruited from two health centers serving the uninsured. CG had diabetes for ≥ 6 months, were on average 48.0 (± 11.4) years old, 73.8% female, and 54.8 % with < 8th grade education. Care recipients were on average 53.9 (± 14.0) years old, 54.8 % male, and were functionally independent. Standard questionnaires for perceived caregiving stress (Caregiver Burden Scale), depressive symptoms (CES-D), diabetes self-care practices (Diabetes Care Profile), PH (PCS of the SF12v2) and CG characteristics were administered in person. GC was measured using the glycosylated hemoglobin A1c (HgbA1c). Statistical analysis included correlations, t-tests, and multiple linear regression. On average CG had poor GC (HgbAlc M = 9.0, ± 2.12), but rated their PH better than others with diabetes. CG with high stress had more depressive symptoms (M = 23.75 ± 12.75) than CG with lower stress (M = 15.75 ± 12.01; t (40) = 2.00, p = .026). Almost half (40.5%) had depressive symptoms indicating possible clinical depression. The hypothesized models of caregiver stress, depressive symptoms, and self-care practices were not associated with CG PH (p > .05) or GC (p >.05); however, more persons in the household was associated with poor GC. This study provided support for the influence of CG stress on psychological health in the experience of Hispanic CG with diabetes. The findings of high levels of depressive symptoms and poor GC suggest the need for health care professionals to assess the psychological health of Hispanic CG and better educate them about the importance of GC for prevention of serious health problems.
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Chukwurah, Joan Nkechi. "Associations between Influencing Factors, Perceived Symptom Burden and Perceived Overall Function among Adults Living with Human Immunodeficiency Virus Infection." Case Western Reserve University School of Graduate Studies / OhioLINK, 2019. http://rave.ohiolink.edu/etdc/view?acc_num=case1554994347104186.
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Green, Amy Lynn. "Theoretically Guided Examination of Caregiver Strain and its Relationship with School-Based Mental Health Services Utilization and Parent Engagement in Services." Scholar Commons, 2015. http://scholarcommons.usf.edu/etd/5692.
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Broadly, the purpose of this study was to address the gaps in the knowledge base of caregiver strain through an examination of this and other theoretically related constructs in a sample of parents of high-risk youth. In the last two decades, a growing body of research has pointed to the significance of strain that can result from this caregiving experience, particularly as it relates to patterns of mental health services utilization. Despite the fact that the majority of children who receive mental health receive them from the school, few studies have examined caregiver strain in the context of school-based mental health services or with caregivers of youth in special education for Emotional Disturbance (ED). Additionally, while the Modified Double ABCX Model of family stress and coping has been identified as a useful model to understand caregiver strain and its related constructs, questions remain about how all of the components of this model work together to influence caregiver strain and the mechanism by which caregiver strain influences youth mental health service use and parent engagement in services. The specific aims of this study were to: (1) explore the construct of caregiver strain and its relationship with theoretically related constructs in caregivers of youth in special education for ED, and (2) examine the factors, including caregiver strain, that predict school-based mental health services utilization and parent engagement in services.
Secondary analyses were conducted using data collected as part of a randomized controlled trial of a parent support intervention for caregivers of youth in special education for ED. Participants included 112 caregivers and you their youth recruited from 22 schools and special education centers. Data were provided by caregivers and school-based mental health service providers. Caregivers completed phone interviews conducted upon entry into the study and again approximately nine months later. These semi-structured interviews included measures of youth functioning, caregiver strain, and caregivers’ perceptions related to their child’s problems and engagement in services. School-based mental health service providers supplied data related to the amount of school-based mental health counseling services received by youth and whether caregivers consulted with service providers during the study period. Data were analyzed using a variety of quantitative methods, including descriptive statistics, dependent samples t-tests, one-way ANOVA, Structural Equation Modeling (SEM), multiple linear regression, and multiple logistic regression.
Results revealed that caregivers reported the highest levels of subjective-internalizing strain, and that the level of three types of caregiver strain decreased from time 1 to time 2. Additionally, caregivers of males tended to report higher levels of strain than caregivers of females, and parents tended to report higher levels of strain than other caregivers. Consistent with previous studies, non-Hispanic Black caregivers tended to report the lowest levels of caregiver strain compared to all other racial/ethnic groups. Findings from SEM analyses revealed that following slight modifications to the originally hypothesized model, the model tested fit the data well and all of the paths included in the model (other than those related to race/ethnicity) had statistically significant parameter estimates. Findings from the multiple linear regression analyses revealed that collectively the predictors included in the model accounted for only a small percentage of the variance in the outcome (11.9%), and none of the predictors included in the regression model significantly predicted the amount of school-based counseling received by students. Results from the multiple logistic regression analyses revealed that only youth gender and youth conduct problems were significant predictors of the outcome; caregivers of male youth and caregivers of youth with more conduct problems were less likely than caregivers of female youth and caregivers of youth with fewer conduct problems, respectively, to have consulted with their child’s school-based mental health services provider during the school year.
Collectively, findings from this study demonstrate that caregivers of youth in special education for ED experience caregiver strain to a similar degree as caregivers of youth receiving services through mental health systems. Further, findings provide evidence for the usefulness of the Modified Double ABCX Model in studying and understanding caregiver strain in this population. While findings from this study provide support for the relationships among the constructs of this model, findings from this study also suggest that this model may not hold up in terms of predicting the amount of school-based services received by youth or the likelihood of parent engagement with their child’s school-based mental health service provider. Additional research is needed that includes a more complete representation of the constructs of this model to determine if this model holds for school-based service use and engagement.
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Joubert, Janetta Debora. "A profile of informal carers in South Africa." Diss., Pretoria : [s.n.], 2005. http://upetd.up.ac.za/thesis/available/etd-12022005-140227.
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Freeman-Hildreth, Yolonda. "THE PATIENT PERSPECTIVE: EXPLORING THE INFLUENCE OF SOCIAL INTERACTIONS ON CHRONIC DISEASE OUTCOMES." Case Western Reserve University School of Graduate Studies / OhioLINK, 2019. http://rave.ohiolink.edu/etdc/view?acc_num=case1554315427596961.
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Metcalfe, Leanne N. "Bayesian methods in determining health burdens." Diss., Atlanta, Ga. : Georgia Institute of Technology, 2008. http://hdl.handle.net/1853/31809.
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Thesis (Ph.D)--Biomedical Engineering, Georgia Institute of Technology, 2009.Committee Chair: Vidakovic, Brani; Committee Member: Griffin, Paul; Committee Member: Kemp, Charlie; Committee Member: Sprigle, Stephen; Committee Member: Villivalam, Arun. Part of the SMARTech Electronic Thesis and Dissertation Collection.
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Moxon, Alicia M. "The effectiveness of a brief psychoeducational intervention for people with schizophrenia and their families : a dissertation presented in partial fulfilment of the requirements for the degree of Doctor of Philosophy in Psychology at Massey University, Palmerston North, New Zealand." Massey University, 2009. http://hdl.handle.net/10179/1143.
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In an attempt to replicate and extend previous research, the present study conducted a brief psychoeducational intervention through community organisations designed to overcome methodological shortcomings of past studies. The two session intervention (one session with follow-up phone call) sought to establish if a brief community intervention was effective in both improving family members’ knowledge about schizophrenia and various other indicators linked to improved client functioning. People with schizophrenia and their family members (N = 50) were recruited into a controlled trial of a brief educational intervention. Clients and their corresponding key family members were randomly allocated to a treatment group or a wait-list control group. Measures included those reflecting knowledge about schizophrenia, expressed emotion, perceived coping ability, burden of care and distress. Analyses showed that knowledge increased significantly after the intervention and not after the control condition and was maintained at a nine-month follow-up. Family members’ and clients’ expressed emotion ratings significantly decreased from pre- to post-test with changes in total expressed emotion scores improving across treatment by over twice the magnitude compared to the control condition. All gains were maintained at the nine-month follow-up, with continuing improvement seen in family members’ intrusiveness ratings. A similar pattern of findings was reflected on other indices, with significant improvements in burden of care, coping and distress that were more a function of intervention than the control condition. All gains were maintained at the nine-month follow-up. Additionally, assessment of relapse rates at this follow-up interval indicated that no client had relapsed. Overall the results suggested that although knowledge increased as a result of education, the improvements in all indicators other than knowledge appeared to be due to education combined with some non-specific factors. These non-specific factors may have included expectancy effects, setting effects, sampling bias and other possibilities. These issues are considered in terms of implementation of brief programs in supportive community settings and in terms of future research.
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Liljeroos, Maria. "Caring needs in patient-partner dyads affected by heart failure : An evaluation of the long-term effects of a dyadic psycho-educational intervention." Doctoral thesis, Linköpings universitet, Avdelningen för omvårdnad, 2017. http://urn.kb.se/resolve?urn=urn:nbn:se:liu:diva-133182.
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Introduction: As medical treatment has improved, patients with heart failure (HF) now live longer and care mostly takes place at home with partners providing the main assistance. Taking care of an ill or disabled individual imposes a well-documented burden on the partner’s healthrelated quality of life. The awareness of partners’ burdensome situation is increasing, but few interventions have targeted the needs of patientpartner dyads with HF. The results have been inconclusive and give no clear guidance on how interventional programmes should be designed to improve both patient and partner outcomes. Aim: The overall aim of this thesis was to evaluate the effects of a psychoeducational intervention delivered to patient-partner dyads with HF during long-term follow-up, and to explore the dyads’ perceived caring needs. Methods: The thesis is based on four papers that used both quantitative and qualitative data. Study I and II used a randomized controlled design with a follow-up assessment after 24 months including 155 patientpartner dyads. The control group received care as usual. The intervention group received care as usual, and in addition they participated in the nurse-led psycho-educational intervention. Data was collected using questionnaires before and 24 months after the intervention, in order to determine the long-term effects on patients and partners regarding health related quality of life, perceived control, symptoms of depression and partners’ caregiver burden (I, II). A conceptual health promotion model inspired the intervention. To describe how the model was applied, a qualitative approach analysing nurses’ documentation of the sessions with 71 dyads in the intervention group (III) was used. Study IV has an explorative design. To further explore the dyads’ perceived caring needs, focus groups interviews with 19 patient-partner dyads with heart failure (IV) were performed. Results: The intervention did not have any significant effect on physical or mental health- related quality of life, depressive symptoms, or perceived control over the heart failure among the dyads (I) or caregiver burden in the partners (II) after 24 months. Furthermore, time to first event did not differ significantly between the dyads in the intervention group and the control group (I, II). As for the partners, both the intervention and control group reported decreased physical health between the baseline assessment and the 24-month follow-up (I). The intervention was composed of three components; 1) cognitive 2) supportive, and 3) behavioural component. The analysis of the nurses’ documentation confirmed the coverage of all the components and the analysis revealed a vide range of caring needs among the dyads (III). The dyads described a need to learn about HF to be able to manage everyday life. Regular outpatient clinic visits and access to telephone support were vital and both the patient and the partner need to be present at the clinic visits. Meeting others who are in the same situation and sharing the burden in nurse-led group sessions was proposed as an opportunity to support each other and others (IV). Conclusions: Over the 24-month follow-up period, the intervention had a neutral effect on health- related quality of life, depressive symptoms and perceived control over the HF among the dyads, and on partners’ caregiver burden. Considering the fact that partners serve as a critical extension of the formal healthcare system, and that both patients and partners ask for more support, it will become crucial to find new ways to support dyads affected by heart failure. This thesis may be viewed as a first step in trying to understand dyads’ perceived caring needs, and it can serve as a guide in clinical work and when designing new dyadic interventions.
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Jacyna, N. "Assessing the impact of parental mental health on child physical health : validation of a measure of carer burden within carers of children with chronic kidney disease." Thesis, Canterbury Christ Church University, 2012. http://create.canterbury.ac.uk/11137/.
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Section A provides an overview of the literature investigating the relationship between parental mental health and child physical health within populations of children with chronic childhood illness. Evidence for whether this relationship definitively exists, as well as the potential pathways through which this relationship could operate, is evaluated. Carers of children with Chronic Kidney Disease (CKD) can experience burden and psychological distress, which has been shown to impact on the child's physical health. Section B is an empirical study aiming to assess the validity and reliability of the Paediatric Renal Carer Burden Scale (PR-CBS) , a 51 item psychometric measure designed to assess carer burden in carers of children with CKD. Factor analysis indicated retention of 21 items representing 5 factors; Illness worries (8 items), Impact on self (5 items), Impact on child (3 items), Responsibility (3 items) and Institutional burden (2 items). Together they explain 53% of the total variance. Internal reliability for both the full scale and sub-scales were acceptable. Convergent validity was demonstrated using the Hospital Anxiety and Depression Scale and Caregiver Strain Questionnaire and the scale was reported by respondents as being acceptable to complete. The PR-CBS has been shown to be a valid and reliable scale and as such is a clinically relevant tool with which to identify burdened carers and provide additional psycho-social support so as to ensure best outcomes for both carer and child. Section C provides a critical evaluation of the research process and reflections from the researcher on learning throughout the process of the study as well as clinical implications and future research directions.
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Tadokera, Rabecca. "Investigating the socio-economic and epidemiological risk factors associated with TB transmission in a high TB and HIV burdened community in Cape Town, South Africa." Master's thesis, University of Cape Town, 2018. http://hdl.handle.net/11427/28146.
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Background: While several studies have studied the associations between biological factors such as HIV-status with TB transmission or clustering, our understanding of the associations between TB transmission and socio-economic risk factors for TB remains incomplete. More studies are required to enhance our understanding, and hence inform targeted interventions to curb TB transmission, particularly in high burden communities. This study aimed to explore the associations between TB transmission and socio-economic risk factors in one such high TB and HIV burdened community. Methods: A cross-sectional molecular epidemiology study was conducted among adult TB patients resident in a geographically well-defined peri-urban township of Cape Town between 2001 and 2010. Following informed consent, clinical and demographic data were extracted from TB registers and clinical folders. Additional socio-economic data were collected using interviewer-administered questionnaires that were designed to capture data on TB history, TB contacts, socio-economic conditions such as occupation, income level, educational level, sexual behaviour, sexual history in addition to other social and demographic data. M.tb isolates from TB patients were previously analysed using IS6110-based RFLP. Strains with <6 copies of IS6110 (low bandwidth strains) are known to be poorly differentiated and so were excluded from analysis. Composite variables were generated for the social and economic factors using a scoring algorithm to create a "social score" and an "economic score". Data was analysed using StataCorp version 12 software. Bivariate associations and adjusted binary logistic regression analyses were performed to determine associations between TB transmission and the social/economic score in addition to other risk factors that were studied. Results: Of the 509 participants who had complete data available, 352 (69%) were classified as clustered while the remaining 157 participants (31%) were classified as non-clustered. Our analysis showed that clustered cases were more likely to have stayed for a longer period in the study community, (OR=1.06, C.I: 1.02 to 1.10, p=0.006). Clustered cases were also more likely to have stayed in the same house for longer, (median=3 years vs. 2 years, p=0.06) and to live in more crowded conditions as shown by the size of the house and number of rooms used for sleeping (p=0.038). While the evidence was weak, there was a tendency towards a positive association between a high social score and clustering (OR=1.39, C.I: 0.94; 2.03, p=0.08). Conversely, there was a moderate negative association between a high economic score and clustering (OR=0.69, C.I: 0.45; 1.06, p=0.09). Conclusions: While the association between poverty (poor socio-economic status) and TB transmission is not new, the association between TB transmission and prolonged stay within a high burdened community that we report in this study is novel. Our findings further suggest that even in poorer communities there is a "sliding-scale of poverty", with individuals at the lower end of the economic scale being at greater risk for acquiring TB infection and that targeted interventions to address TB transmission in such high burdened communities may be required.
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Wang, Ya-Ni, and 王亞妮. "Burden of Primary Caregivers in Home Health Care." Thesis, 1999. http://ndltd.ncl.edu.tw/handle/25792107110176519736.
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碩士國立臺灣大學
護理學研究所
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The purpose of this study was to understand the patients'' demographicdata, primary caregivers'' demographic data, and primary caregivers'' social support. The relationships between patients'' demographic data, primary caregivers'' demographic data, primary caregivers'' socialsupport and caregivers'' burden in home health care were also explored. This was a cross-sectional study. A structural questionnaire was usedto collect data via face to fac interview. Data were collected from Marchto May, 1999. Subjects consisted of 102 patients and their caregivers from 5 home health care agencies in Taipei Metropolitan Area. The importantresults were summarized as followed: 1.The mean age of patients was 72.68. The majority of patients were male,married, with educational level of elementary school. The major diagnosis included stroke, hypertension, and diabetes melitus, and the mean numberof diseases was 1.9. Most patients had N-G tube and foley catheter indwelling, the average number was 1.5. About 83.3% patients'' functional level was complete dependence. 2. The mean age of primary caregivers was 72.68. The majority of primary caregivers were female, married, educational level of elementary school. Most caregiver were patient''s spouse, children and daughter-in-law. About 73.5% caregivers were not working. 37.2% caregivers were suffering from work conflict. 96.1% caregivers lived with patients. Before patient was sick, the relationship between patient and caregiver, 35.5% were stated very good, however, only 27.5% were stated good after the fact. As to caregivers'' health status, 58.8% were rated healthy. The average length for taking care of the patients was 39.16 months and the average time was 18 hours per day, 7 days per week. 69.6% caregivers did not hire helper to assist them. 58.8% caregivers had family members such as spouse, son and daughter to help them to take care of patients. 3.Among the primary caregivers'' burden, the financial burden which wasthe heaviest one, social burden was the second, physical burden was the third and the last one was psychological burden. 4.The most important predictive variables for primary caregivers burden were primary caregivers'' health status, the hours of taking care of the patients per week, the level of social support need and caregivers'' age, which explained 46.7% of variance of primary caregivers'' burden. Based on these results, some recommendations for nursing practice, education, research and health policy were made.
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Lin, Pei-Chen, and 林佩蓁. "Disease Burden and Health Care Cost of Oral Cancer." Thesis, 2005. http://ndltd.ncl.edu.tw/handle/41709091056101578777.
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碩士高雄醫學大學
口腔衛生科學研究所碩士班
93
Abstract Introduction In Taiwan, the incidence rate of oral cancer including oral and pharyngeal cancer has increased rapidly. The death rate of oral cancer was 12.3% and incidence rate was 28.63% in men in 2001. Oral cancer ranks 4th as a cause of death from cancer in 2001. Due to the improvement in medical technology, the cancer patients have prolonged their life lives. We need to pay more attention on the impact of oral cancer on the patients, patient’s families and society. However, no study showed the medical cost and disease burden of oral cancer in Taiwan. Study objective: Our aims are to determine the direct and indirect medical cost, lost productivity due to premature death, and disease burden of oral cancer by the health insurance database, questionnaire interview, public health dataset, cancer registry data, the charge list for discharge and DALY. Methods The “cancer dataset”, a part of Taiwan National Health Insurance (NHI), was bought from National Health Research Institutes and was applied to calculate the direct medical cost of oral cancer. The variables of the mask national ID number, oral cancer ICD code (diagnoses by ICD 9th Revision 140-149 except 142 and 147), hospital visiting date, items of medical costs and treatment were used in present study. The hospital visiting date and the mask national ID number of database were used to identify new cases. All new cases in 1997-2001 were followed up from 1 to 5 years to estimate the direct medical cost. A total of 142 patients were invited to complete a questionnaire and recruited from the medical centers in Kaohsiung and Taipei. 71 patients with the discharged fee were recruited from Kaohsiung medical centers. The NHI dataset, the charge list for patient discharged and the incidence numbers adapted from Taiwan Cancer Registry data were to evaluate the medical cost and the out-of-pocket costs. The NHI data and questionnaire data were used to calculate the costs for outpatients in traffic and caregiving costs accompanying with hospitalization for incident cases in 1997-2001. The numbers of death caused by oral cancer at the age of 20-64 year-old in 1997-2001, and average salary from Public Heath data were applied to evaluate the lost productivity due to premature death. The WHO DALY excel trail table was applied to estimate the disease burden of oral cancer. Results: From NHI database, the costs for outpatient visiting and hospitalization were increased year by year. In 1999 and following years, the individual cost was not dramatic change, but the medical costs were increasing as the cases increasing. The direct medical costs for new cases to follow up 5 years were increased by year. In 1997, the direct medical cost was about 735 million dollars. It could be increased to 1649 million dollars in 2001. In the production lost due to premature death, there were 6200 million dollars lost in 1997 and 9000 million dollars lost in 2001. The major part of total costs for oral cancer was the costs of production lost due to premature death (82%), and the second was medical cost (14%) and the third was costs in traffic spending and caregiving (2%). The DALY of oral cancer in Taiwan was increasing by years. The DALY of men is 12 times higher than that of women. Conclusions The disease burden estimated by DALY and economic cost were increased from 1997 to 2001. The incidence rate of oral cancer was increasing. Although the spending in traffic and costs for caregiver were not major part of total medical cost, it needs us to take care of it. The major costs were raised from lost productivity resulting from premature death. Therefore, the human health in our country would be threatened by oral cancer, especially in men.
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Lin, I.-Po, and 林宜柏. "Equity of Health Care Financial Burden in Taiwan：the Impact on Family Budgets." Thesis, 2001. http://ndltd.ncl.edu.tw/handle/49053690567105711727.
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Guest, J. F., N. Ayoub, T. McIlwraith, I. Uchegbu, A. Gerrish, D. Weidlich, Kath Vowden, and Peter Vowden. "Health economic burden that wounds impose on the National Health Service in the UK." 2015. http://hdl.handle.net/10454/9286.
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OBJECTIVE: To estimate the prevalence of wounds managed by the UK's National Health Service (NHS) in 2012/2013 and the annual levels of healthcare resource use attributable to their management and corresponding costs. METHODS: This was a retrospective cohort analysis of the records of patients in The Health Improvement Network (THIN) Database. Records of 1000 adult patients who had a wound in 2012/2013 (cases) were randomly selected and matched with 1000 patients with no history of a wound (controls). Patients' characteristics, wound-related health outcomes and all healthcare resource use were quantified and the total NHS cost of patient management was estimated at 2013/2014 prices. RESULTS: Patients' mean age was 69.0 years and 45% were male. 76% of patients presented with a new wound in the study year and 61% of wounds healed during the study year. Nutritional deficiency (OR 0.53; p<0.001) and diabetes (OR 0.65; p<0.001) were independent risk factors for non-healing. There were an estimated 2.2 million wounds managed by the NHS in 2012/2013. Annual levels of resource use attributable to managing these wounds and associated comorbidities included 18.6 million practice nurse visits, 10.9 million community nurse visits, 7.7 million GP visits and 3.4 million hospital outpatient visits. The annual NHS cost of managing these wounds and associated comorbidities was pound5.3 billion. This was reduced to between pound5.1 and pound4.5 billion after adjusting for comorbidities. CONCLUSIONS: Real world evidence highlights wound management is predominantly a nurse-led discipline. Approximately 30% of wounds lacked a differential diagnosis, indicative of practical difficulties experienced by non-specialist clinicians. Wounds impose a substantial health economic burden on the UK's NHS, comparable to that of managing obesity ( pound5.0 billion). Clinical and economic benefits could accrue from improved systems of care and an increased awareness of the impact that wounds impose on patients and the NHS.Yes
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Brink, Peter. "The Impact of Informal Care and Caregiver Burden on Place of Death in Palliative Home Care." Thesis, 2008. http://hdl.handle.net/10012/4058.
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BACKGROUND: Literature suggests that many palliative home care patients wish to die at home. This study investigated determinants of caregiver burden among palliative home care patients, with particular interest in its relationship with place-of-death. Previous research has examined how patient care, health conditions, and characteristics of informal support relate to caregiver burden or place of death in palliative home care. However, none of the existing literature has focused on the role of caregiver burden on place of death or congruency between the patients’ preferred vs. actual place of death. It seems likely that, in light of the high dependence on informal care during the last days of life, that caregiver burden plays a significant role in place of death. A number of factors may contribute to the incongruence between preferred versus actual place of death. For example, informal caregivers may lack the necessary skills and/or knowledge to provide adequate care to terminally ill loved ones. They may also be unable to cope with the type of care required by his or her loved one. Longitudinal studies indicating increasing home death rates among palliative home care patients. Research attributed the increased rate of home death to expanding home care programs rather than improving home care services. The goal of this study was to provide home care agencies the means to increase rates of home death among home care patients who wish to die at home by better directing existing types of services to lessen caregiver burden and improving congruency between preferred versus actual place-of-death.
OBJECTIVES: The aim of the research was four fold. First, it validated the caregiver burden items in the interRAI Palliative Care (interRAI PC) with self-report caregiver scales. The second section examined the determinants of caregiver burden. The third section examined the determinants of place of death and congruency between preferred vs. actual place-of-death. The final section examined the role of caregiver burden and place-of-death.
METHODS: This was a prospective cross-sectional study that employed the Caregiver Burden Scale, the Burden Inventory, and the interRAI PC tool. The sample included all palliative home care patients and their caregivers who received formal care from one Ontario community care access centre. Health information was collected by case managers during regular assessment intervals.
RESULTS: The three interRAI PC items measuring caregiver burden are an adequate measure of subjective stress burden. The sum of these items can be used to construct a caregiver burden scale. Determinants of caregiver burden were limited to unstable health and higher levels of self-reported depression, anxiety, and anhedonia. Patients who preferred to die at home were more likely to suffer IADL impairment, but not ADL impairment, and they were more likely to have completed a do-not-hospitalize order or do-not-resuscitate order. Patients whose caregiver was not a spouse or child relative were less likely to prefer home death. Further analyses showed a high level of agreement between preferred versus actual place of death. Overall, 57% of patients died at home, 68% of those patients who wished to die at home had managed to do so. Determinants that increased the likelihood of home death included completion of a do-not-hospitalize order, preference to die at home, and excessive sleep. However, the presence of a caregiver who was unable to continue providing care decreased the likelihood of home death.
CONCLUSION: The purpose of this study was to examine the role of caregiver burden in place of death among recipients of palliative home care. Studies such as this are important to the patients, caregivers, and the agencies that provide home care. Results of this study confirm many of the determinants of home death reported by earlier research. It is unique in that it identifies the caregiver’s ability to continue providing care as an important determinant of home death. These results support that notion that the needs of the caregiver should also be examined when determining the needs of the patient and that the patient and caregiver should be considered a unit of care. It also illustrates the important role of advanced directives, more specifically do-not-hospitalize orders, among patients receiving palliative home care.
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Gallagher, Celine. "Improving patient outcomes and reducing health care burden - the need for a new paradigm of care delivery for atrial fibrillation." Thesis, 2019. http://hdl.handle.net/2440/120497.
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Atrial fibrillation (AF) is an emerging global epidemic. Incidence and prevalence of the condition continues to rise, and AF related health care utilisation has become costly and burdensome. Furthermore, quality of life in AF is akin to those with other chronic cardiovascular conditions such as heart failure. The literature review in Chapter 1 of this thesis explores current research in AF and explores the opportunities that exist for improving outcomes in this condition. Chapter 2 explores national trends in hospitalisations due to AF in Australia and compares this to two other common cardiovascular conditions, heart failure (HF) and myocardial infarction (MI). This demonstrates that hospitalisations due to AF have grown at a significantly greater rate than that of HF and MI and are now the most common cause for cardiovascular hospitalisation in Australia. The rising incidence of AF has led to a search for new risk factors for the condition in addition to exploring appropriate targets and thresholds for existing risk factors. In Chapter 3, the association between alcohol and AF is examined with a view towards determining a lower threshold at which risk of developing the condition is increased. Results of this study demonstrate that up to one standard drink per day does not confer an increase in risk, with gender differences apparent at moderate levels of intake. Chapter 4 is concerned with exploring the current literature in relation to the use of the integrated care approach in AF and its impact on clinically relevant outcomes. This synthesis of the current literature shows that this approach is associated with improvements in several clinically relevant outcomes including reductions in all-cause mortality and cardiovascular hospitalisations. In Chapter 5, the contemporary management of AF is reviewed in a cohort of symptomatic individuals who have presented to the emergency department due to AF with a view towards determining factors predictive of re-presentation. As hospitalisations remain the most expensive component of AF care, this is particularly relevant in the search for modifiable factors that may present an opportunity for intervention. Of interest, the use of a non-standardised personalised AF action plan for management of future episodes was associated with a significant increase in risk of both AF related emergency department presentations and hospitalisations. In Chapter 6, the impact of a brief nurse led educational intervention, which incorporates lifestyle and behavioural goal setting, in AF is evaluated. The brief approach used in this study did not impact on health-related quality of life or cardiovascular risk factor status in a contemporary cohort of individuals with AF at short term follow up. Finally, in Chapter 7, a new target for improving outcomes in this condition is examined, with a review of the current literature concerning polypharmacy and clinically relevant health outcomes in the AF population. This has demonstrated association with several important outcomes including increased all-cause mortality, major bleeding and clinically relevant non-major bleeding.Thesis (Ph.D.) -- University of Adelaide, Adelaide Medical School, 2019
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LU, CHIEN-MEI, and 呂千媚. "Care Burden and Mental Health of Family Caregivers of Patients with Brain Injury: A Systematic Review." Thesis, 2019. http://ndltd.ncl.edu.tw/handle/k7n68d.
Full textAbstract:
碩士慈濟大學
人類發展與心理學系碩士班
107
Background: Life-long physical and neuropsychological impairments of survivors of traumatic brain injury (TBI) are the most difficult challenges not only for the patients but also for their families, particularly for those who are responsible for daily caregiving tasks. Previous studies revealed that caregiver burden was negatively associated with the quality of life and mental health of family caregivers. However, other findings indicated the burden of caregiving was unrelated to the well-being of caregivers, instead family functions and social support played key roles in determining caregivers’ quality of life. The aforementioned inconsistent results suggest a systematic review to clarify the associated factors of caregiver burden and mental health is needed. Method: A systematic search of published articles related to TBI and caregiver burden was conducted in Pubmed, CINAHL Complete, Health Source: Nursing/Academic Edition, MEDLINE with Full Text, PsycARTICLES, Psychology and Behavioral Sciences Collection, PsycINFO, SocINDEX with Full Text and Airiti Library. A final of 17 studies were included for meta-analyses. Result and discussions: The result revealed that caregiver burden was associated with quality of life, mental health, and life satisfaction of family caregivers of TBI patients. A noteworthy result was that the correlations among depression, caregiver burden and social support of caregivers were bi-directional. Additionally, the burden of caregiving was decreased when instrumental social supports were available. These findings suggest that it is important for psychological practitioners who work with caregivers of TBI to evaluate caregivers’ needs as well as burden of caregiving, and to help them create a solid social support.
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Huang, Tzu-Wei, and 黃子溦. "Equity between the Insurees'' premium Burden and Their Medical Care Expenditures in Taiwan''s National Health Insurance Scheme." Thesis, 2000. http://ndltd.ncl.edu.tw/handle/04342521269906728468.
Full textAbstract:
碩士國立政治大學
風險管理與保險學系
88
Equity is widely acknowledged to be an important policy objective in the health care field. The principle comes in two versions：a horizontal version(persons in equal need should be treated the same) and a vertical version(persons with greater needs should be treated more favourably the those with lesser needs)。 The purpose of this study is to investigate the equity between the insurees’ premium burden and their medical care expenditures in Taiwan’s National Health Insurance Scheme .The sample combines two sets of data，which are data for the insured and their dependents’ premiums and medical expenditures of utilization obtained from the Bureau of NHI ; individual income tax return data obtained from the Data Processing Center of the Ministry of Finance. According the data ，we will be able to use the regression model of stepwise and probit methods to analysis the purpose of this study. The major findings are twofold：First， at present the regulations in the premium exists the horizontal and vertical the inequity ， so the system can’t bring the income replaecment， About medical dilvery， NHI is favorable person lower-income .To achieve ability to pay， the gap between the upper and bottom of insured payroll-related amount class should be lengthened.And to lighten the burden of insuree with dependents .Second， in the medical delivery deductible amounts paid by beneficiaries will be changed from fixed amounts to fixed rate to control the wasting medical resource.
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Filipe, Luís Alexandre Coelho. "A tour of health care: emergency room, hospital and home." Doctoral thesis, 2020. http://hdl.handle.net/10362/108174.
Full textAbstract:
My thesis is a small tour of the health care system (emergency room, hospital and home), with special emphasis on providers. Chapter 1 analyzes how emergency room doctors change their behavior when the waiting room is crowded. The outcomes reflect the time spent with the patient, the intensity of treatment, and discharge destination. Chapter 2 extends the previous setting to inpatient care, to determine how doctors react to hospital occupancy level. It identifies doctors’ discharging criteria as a causal factor for the positive relation between occupancy rates and readmissions. The analysis in Chapters 1 and 2 contributes to the doctors’ incentives literature, explaining how these agents behave in the context of a National Health Service, with no financial incentives. Chapter 3 examines the impact of informally providing care to a partner (at home) on the physical and mental health of the carer.
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Aboobaker, Jamila B. "Skin disorders in primary health care in KwaZulu-Natal : testing for solutions after assessment of burden of disease, and evaluation of resources." Thesis, 2007. http://hdl.handle.net/10413/7823.
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Dulal, Ram Krishna. "A perspective health care model for Nepal to reduce burden of Diabetes Mellitus through policy appraisal of Germany and Great Britain /." 2004. http://bvbr.bib-bvb.de:8991/F?func=service&doc_library=BVB01&doc_number=015203568&line_number=0001&func_code=DB_RECORDS&service_type=MEDIA.
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Lee, Hsiu-Ju, and 李秀如. "The Effectiveness of Family-Center Care on Health status, Caregiver Burden, Family Function among Patient and Caregiver with Bipolar Disorder: An experimental study." Thesis, 2011. http://ndltd.ncl.edu.tw/handle/49037927031507310096.
Full textAbstract:
碩士國防醫學院
護理研究所
99
Background Bipolar disorder is one of the most disabling chronic psychiatric diseases. Enormous burden of the caregivers were found. 32.4% of the caregivers reported mental health service use. 93% of the caregivers reported a moderate or even higher degree of care giving strain when their beloved ones were admitted to psychiatric facilities. Psychiatric nurses not only take care of the patients, but also their caregivers. Aims The purpose of this study was to evaluate the effectiveness of Family-Centered Care (FCC) in increasing family function, relieving caregivers’ burden and perceiving global health status among patients with bipolar disorder and their caregivers. Methods Thirty-six pairs of patients and caregivers were recruited in a medical center in the Northern Taiwan from April to November 2010. We randomly assigned sixteen pairs in the experimental group and twenty pairs in the control group. We have introduced Chinese Health Questionnaire (CHQ), Family Function Scale (FFS), and Caregiver Burden Inventory (CBI) within the assessments of global health status, family function, and caregiver’s burden. Using a Calgary Family Intervention Model, four sections of sixty to ninety minutes in-depth interview were performed for the patients and their caregivers of the experimental group. Statistical tests of Paired t-tests, Chi-square, Pearson’s product moment correlation and Mixed Model repeat measurement were performed with the statistical significance set at α < 0.05. Results The demographic variables of patients and their caregivers were not statistically significant between the experiment group and control group. For the patient after FCC, it showed significantly improved in FFS, especially in the subscale of Cohesion and communication, while CHQ has no statistical improvements. For the caregivers after FCC, FFS was also improved in the subscales of Conflict, Communication, and Problem Solving, while CHQ and CBI showed no statistical difference. Conclusions FCC tends to integrate the patients and their caregivers to discuss about further disease caring plans and problem solving skills. The statistic results showed that FCC could improve the global family function. The patients and their caregivers also learned better communication skills through FCC. This study demonstrated a holistic family nursing care model in acute psychiatric settings.
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Bouchard, Maryse. "Responding to the Global Injury Burden by Improving Access to Orthopaedic Medical Devices: A Qualitative Case Study of Orthopaedic Services in Uganda." Thesis, 2011. http://hdl.handle.net/1807/30520.
Full textAbstract:
The global burden of injury is severely underappreciated and disproportionately affects low-income countries. With timely, appropriate orthopaedic treatment disability and mortality can be prevented, yet appropriate health resources are seldom available. Without orthopaedic medical devices (OMDs), quality of orthopaedic care suffers and the burden of preventable injury is exacerbated. A qualitative case study of 45 key informant interviews was conducted in Uganda to explore accessibility of OMDs, such as plaster, external fixators and implants. Data analysis elicited four major themes as barriers preventing access to OMDs in Uganda: 1) Poor leadership in government and corruption; 2) inadequate human resources; 3) inefficient and insufficient health care infrastructure; and 4) high costs of OMDs and poverty. Potential solutions for improving access to orthopaedic care were categorized as policies prioritizing orthopaedic services, training more orthopaedic specialists and creating incentives for them to work in underserviced areas, and innovative strategies funding for orthopaedic services.
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Helelo, Tsegab Paulose. "Guidelines for the prevention of the burden of hypertension among adults in Hawassa City administration of Ethiopia." Thesis, 2018. http://hdl.handle.net/10500/25807.
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PURPOSE: The main aim of this study was to develop guidelines for prevention of hypertension among adults in Hawassa City, Ethiopia.
METHOD: The study used mixed methods approach. In Phase 1, a quantitative community-based comparative cross-sectional survey was used to establish the burden of hypertension and its determinant factors in the urban and peri-urban areas. The survey was meant to describe adult’s knowledge and attitudes regarding hypertension risky behaviour and its prevention. Secondly, in the qualitative phase, focus group discussion (FGD) among health care providers of selected sub-cities of the first phase of the study was conducted to explore their perspectives towards efforts exerted for the prevention of hypertension. Thirdly, based on the findings of the two phases of the study, review of literatures, the researcher’s insights and exploring expertise opinion using a Delphi technique, a guideline for hypertension prevention among adults was developed.
RESULTS: The overall prevalence of hypertension was 21.2%, higher in the urban setting (24.5%) than the peri-urban (14.7%) (x2=7.81 and p-value 0.003). Fifty-five (55) of the hypertensive participants were newly screened. In the urban setting age, wealth, use of top added salt on plate, mode of transport, family history of hypertension, ever-told have diabetes and body mass index were significantly association with hypertension. In the peri-urban setting age, sex, vegetable eating habit, performing physical fitness activities and family history of hypertension showed significantly association with hypertension.
Regarding knowledge of hypertension risky behaviour and prevention, 46.1% (n=282) of the respondents were with “low”, 37.6% (n=230) with “medium” and 16.3% (n=100) with “high” level of knowledge on hypertension risky behaviour and prevention.
The majority of respondents demonstrated positive attitude toward perceived susceptibility and perceived severity whereas the minority had poor attitude toward their perceived benefit of applying hypertension prevention. In the qualitative study, four themes and 12 sub-themes emerged, which explored health care providers’ perspectives regarding efforts exerted for the prevention of hypertension
In conclusion prevalence of hypertension is high and has become a public health problem but activities done on the prevention are minimal. Guidelines developed from this research, if utilised, will assist in lessening the burden of hypertension in Ethiopia among adults.Health Studies
D. Litt. et Phil. (Health Studies)
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Cheng, Ssu-Yu, and 鄭思妤. "The effects of Services from the “ Ten-Year Long-term Care Program” on Burden and Health Related Quality of Life of Caregivers Living in Taipei City." Thesis, 2017. http://ndltd.ncl.edu.tw/handle/q4ae5v.
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Bosch, Johan N. "The needs and experiences of caregivers of persons with Alzheimer's disease living in black rural communities in Mpumalanga." Diss., 2015. http://hdl.handle.net/2263/43765.
Full textAbstract:
The worldwide ageing of the population, with an increase in associated chronic diseases, will inevitably escalate the demand for social work services at individual, group and community level. Alzheimer’s disease is one of the conditions associated with a population that is growing older. The disease was first described by Alois Alzheimer in 1906 and is characterised by progressive declines in cognitive and body functions, eventually resulting in death. It is estimated that 25 to 30 million people worldwide suffer from Alzheimer’s disease and that in 2050, 106.2 million people will be living with the disease, causing a looming global epidemic of Alzheimer’s disease (Brookmeyer, Johnson, Ziegler-Graham & Arrighi, 2007:186).
At some stage in the disease’s process, most, if not all people with Alzheimer’s, require some form of care. This care is generally provided by informal (family) caregivers in the community. Providing care to an older person with Alzheimer’s disease present multiple challenges with many factors influencing the caregiving experience. When the needs of caregivers are not met, caregiver burden may result. For the many families living in rural and impoverished areas, this additional responsibility may come as an extraordinary burden and cause unwarranted stress.
The goal of the study was to explore the needs and experiences of caregivers of persons with Alzheimer’s disease living in black rural communities in Mpumalanga. The guiding research question was: What are the needs and experiences of caregivers of persons with Alzheimer’s disease living in black rural communities in Mpumalanga?
A qualitative research approach was followed with a collective case study research design. The population for this study was caregivers providing care to persons diagnosed with Alzheimer’s disease living within the Ehlanzeni and Nkangala Rural Districts Municipalities of Mpumalanga. Non-probability purposive sampling was utilised to generate a sample.
Eleven participants who were caregivers of persons with Alzheimer’s disease living in communities within the above-mentioned municipalities were selected. Semi-structured individual interviews were conducted with participants. Interviews were voice recorded with the permission of the participants, and were transcribed by a contracted transcriber. The data gathered were analysed by the researcher and themes and sub-themes were identified. The research findings were presented by providing a profile of research participants followed by a thematic analysis of the themes and sub-themes from the transcriptions. Literature control and verbatim quotes were used to support the findings. The themes include the following: Theme One – The Alzheimer’s disease caregiver; Theme Two – Indigenous issues with regards to Alzheimer’s disease; Theme Three – Caregivers’ understanding of Alzheimer’s disease; Theme Four – The impact of Alzheimer’s disease on the caregiver and Theme Five – Support services in the community.
The conclusions of this study reflect that caregivers in black rural communities in Mpumalanga have a number of needs and challenges in providing care to a person with Alzheimer’s disease. Some of the challenges include the absence of caregiving training, stigmatisation due to indigenous beliefs, traditional healers’ diagnosis and treatment of Alzheimer’s disease, limited knowledge of caregivers about Alzheimer’s disease, adverse physical, social and psychological outcomes associated with caregiving, negative experiences with the public health care system, and the limited availability and accessibility of support services in the community.
The recommendations offered by this study can be used by professionals working in the field of gerontology to understand the needs and experiences of Alzheimer’s caregivers. Social workers can use the recommendations to find ways to make their services known to the communities, and improve their intervention and support to these caregivers.Dissertation (MSW)--University of Pretoria, 2015.
Social Work and Criminology
Unrestricted
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Dahms, Joani. "Financing South Africa's national health insurance :|bthe impact on the taxpayer / Joani Dahms." Thesis, 2014. http://hdl.handle.net/10394/11535.
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The tax system in South Africa makes provision for every South African citizen to
contribute to a greater or lesser extent to funding the National Health Insurance
(NHI), either through VAT or PAYE. However, as a result of the high unemployment
rate, a large gap exists between tax and non-tax contributors. The question can now
be asked whether it is fair that just a small percentage of taxpayers are responsible
for the total funding of the NHI. Furthermore, it could be asked whether the taxpayer
is aware of the additional tax burden the NHI will impose on him/her.
The purpose of this research was to investigate three countries, namely, Brazil,
Spain and Germany, where some form of NHI is in operation, in order to find a
possible appropriate funding model for South Africa's NHI and, ultimately, to make
conclusions and recommendations based on the outcomes.
It was subsequently found that, although the taxpayer should be more heavily taxed
in order to fund the NHI, there are a few other possibilities for distributing the tax
burden more evenly. However, the impact of the proposed adjustment to increase
VAT could have a negative impact on the non-taxpayer and might contribute to
greater poverty in South Africa.MCom (South African and International Taxation), North-West University, Potchefstroom Campus, 2014
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Dodge, Christopher E. "Caregiving and schizophrenia: The well siblings' perspective." Thesis, 2011. http://hdl.handle.net/1828/3247.
Full textAbstract:
The purpose of this study was to explore the meanings well siblings attribute to their experiences caring for a brother or sister with schizophrenia. This study retrospectively examined changes in the nature of the relationship between the well and ill siblings before, during, and after the diagnosis of schizophrenia. Ten well sibling caregivers of people with schizophrenia participated in the study. The findings suggest that the sibling relationship was strong in childhood yet weakened in adolescence which influenced the well sibling’s caregiving involvement. During the onset of the illness, well siblings spoke about the changes they noticed in their sibling’s personality, behaviour, and lifestyle choices and sought professional help. The diagnosis of schizophrenia and the illness resulted in marked changes in the relationship between well and ill siblings. Well siblings spoke about struggling with their ill sibling’s dependency and with having to balance their own lives with their caregiving responsibilities.Graduate
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Nascimento, Generosa Gonçalves Simões do. "Os cuidados continuados de saúde em Portugal: perspectiva internacional, experiência do paciente na transição e sobrecarga dos cuidadores informais." Doctoral thesis, 2015. http://hdl.handle.net/10071/11402.
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JEL Classification System: H51 National Government Expenditures and Health I 10 Health: General.Os cuidados continuados de saúde constituem um dos desafios com que as sociedades contemporâneas se debatem, obrigando os países a definirem políticas e estratégias específicas. As dimensões de análise e discussão são diversas, podendo destacar-se o financiamento, a organização e prestação de cuidados, e a sua regulação. A garantia da qualidade dos cuidados prestados é também uma das preocupações pelo que, para além da eficácia clínica e da segurança do paciente, a experiência do paciente tem vindo a tornar-se igualmente central. O paciente é o único elemento constante nesta prestação de cuidados, transitando entre um ou vários prestadores/unidades de cuidados. Para além dos prestadores formais tem de se reconhecer a importância dos cuidadores informais face à sua expressividade e valor económico. Neste trabalho procurou-se dar um contributo, por um lado, para a compreensão dos modelos adotados em diversos países e sua holografia com os respectivos sistemas nacionais de saúde, visando, particularmente, melhorias para as políticas e estratégias do modelo português. Por outro, contribuir para o conhecimento do efeito da experiência do paciente na transição de cuidados sobre o seu estado de saúde e qualidade de vida (ESQV). E, por último, conhecer o impacto do ESQV do paciente na sobrecarga dos cuidadores informais. Para o efeito foram realizados três estudos. No estudo I efetuou-se uma revisão narrativa, analisando-se 17 países. No segundo, através de um estudo longitudinal, foram envolvidos 181 pacientes referenciados para a Rede Nacional de Cuidados Continuados Integrados e no estudo III contemplados 244 cuidadores informais, cujos pacientes cumpriam os critérios de referenciação para a RNCCI. O trabalho tem contributos a nível teórico e prático. A nível teórico destacam-se: i) o mapeamento dos modelos de cuidados continuados nos três sistemas de saúde (beveriano, bismarckiano e de mercado) e sua análise comparativa transnacional; ii) o aprofundamento do conhecimento do efeito da experiência do paciente no ESQV na transição de cuidados entre a alta hospitalar, no internamento nas unidades de cuidados continuados e nas interações entre cuidador e paciente, e iii) a influência do ESQV na sobrecarga do cuidador informal. Do ponto de vista prático, realça-se o contributo para a melhoria das políticas e estratégias desenvolvidas nesta área da saúde em Portugal, para o papel ativo e responsável do paciente sugerindo-se que a experiência do paciente seja um novo indicador da RNCCI, e finalmente, para o reforço de apoios ao cuidador informal pelo papel que desempenha enquanto prestador de cuidados e de intermediário com os cuidados formais. Em termos globais, os resultados mostram que os cuidados continuados nos diversos países constituem um modelo holográfico como os respectivos sistemas nacionais de saúde. O modelo português possui características comuns às dos outros países, identificando-se globalmente com as do sistema beveriano. Contudo considera-se como “quási híbrido” pelo mix utilizado na estratégia de financiamento. Possui uma organização e prestação de cuidados muito estruturada e regulamentada. Ainda que revele práticas de cuidados domiciliários e apoios aos cuidados informais fomenta a institucionalização dos pacientes. A experiência do paciente, tanto na alta hospitalar como no internamento nos cuidados continuados, influencia o seu estado de saúde e qualidade de vida e marcadamente a componente mental. O cuidador informal perceciona uma sobrecarga elevada quer pelo seu sentimento de incompetência ou insegurança quer pela tensão gerada por esta atividade, aumentando este sentimento de fardo quando o seu paciente perceciona um estado de saúde e qualidade de vida muito baixo, especificamente do foro mental. Para a melhoria dos cuidados continuados é fundamental a continuação de estratégias de mudança e desenvolvimento, como por exemplo, o recurso a práticas transnacionais de benchmarking e de benchlearning dos programas e ações implementados, tornar o paciente como um “parceiro” ativo e responsável, fazer do cuidador informal um intermediário com os cuidados formais e “olhar para o lado oculto” das implicações da sua prestação de cuidados.
Long-term care is one of the challenges that contemporary societies are facing and it is forcing countries to define specific policies and strategies. The dimensions of analysis and discussion are various, in which it is possible to highlight the financing, the care provision and the regulation. Care quality assurance is also a concern, where apart from clinical effectiveness and patient safety, patient experience has become equally central. The patient is the only constant element in this care provision, transiting between one or more providers/care units. In addition to formal providers, the importance of informal caregivers must be recognized given its expressiveness and economic value. This work sought to provide a contribution on the one hand to the understanding of the models adopted in several countries and their holography with the respective national health systems, with particular attention paid to enhancements of the policies and strategies of the Portuguese model. On the other hand it aimed to add to the knowledge of the effect of the patient's experience in care transition on their health status and quality of life (ESQV). And lastly, to know the effect of the patients ESQV on informal caregivers’ burden. To this end three studies were conducted. In study I a narrative review was carried out with an analysis of 17 countries. In the second research, through a longitudinal study, 181 patients referred to the National Network of Integrated Long-term Care were involved, and study III included 244 informal caregivers, whose patients met the referral criteria for RNCCI. This work encompasses contributions of theoretical and practical extents. On the theoretical level it stands out the following: i) the mapping of long-term care models in the three health systems (beveridge, bismarck and market-oriented) and their transnational comparative analysis; ii) the knowledge improvement of the effect of the patient's experience on ESQV on transitional care between hospital discharge and hospitalization in long-term care units as well as on the interactions between caregivers and patients, and iii) the effect of ESQV on informal caregiver burden. From a practical standpoint it stands out the contribution to the policies and strategies developed in this health area and specifically for Portugal, to the active and responsible role of the patient through their experience, with the suggestion of the patient experience as a new indicator for the RNCCI, and finally to the strengthening of support targeted to the informal caregiver for its role as a care provider as well as an intermediary agent to the formal care. Overall, the results show that long-term care in different countries constitutes a holographic model as their own national health systems. The Portuguese model has features in common to other countries, which can be altogether matched with the beveridge system. Nonetheless, it is considered as a "quasi-hybrid" system due to the mix used in its financing strategy. It displays an organization and delivery of care highly structured and regulated. Despite revealing home care practices and informal caregiving support, it also fosters the institutionalization of patients. The patient experience, both at hospital discharge and in in-patient long-term care, influences the perception of their health status and quality of life, and markedly the mental component. The informal caregiver perceives a high burden due to their sense of incompetence or insecurity or due to the tension generated by this activity. This sense of burden is enhanced if their patient perceives a very poor health status and quality of life, specifically of mental disorders. To improve long-term care is fundamental the continuous promotion of change and development strategies, such as the use of transnational benchmarking and benchlearning practices of the implemented programs and actions, empower the patient as an active and responsible "partner", convert the informal caregiver into an intermediary of formal care and "look at the dark side" of the implications of their care provision.