Search results for: care burden

Authors: Soo-Bi Lee, Jun Young Jeong, Zehgn Lin, Chenminxi

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Background: In South Korea, a problematic phenomenon has recently arisen whereby adult children continue to receive parentalcaregivingin some cases. These phenomena has been shown to affect the mental health of mothers. Study Goals: The purposes of this study are to verify whether the mediating effects of stress on the relationship between a woman’s care burden for their adult children and depression are moderated by their satisfaction about their husbands’ sharing of the caregiving. Methodology: This study analyzed 3,053 married women with adult children using the most recent data from the “Korean Longitudinal Survey of Women & Families 7th(2018)" conducted at the national level. The analysis was conducted using the SPSS Process Macro Model 7 to verify the moderated mediating effects and subsequently confirm their significance based on the bootstrapping method. Results and Implications: (1) Stress was identified a mediating factor in the relationship between the care burden for adult children and depression; and (2) the mediating effects of stress on depression from the burden of caring for adult children are modulated by the woman's satisfaction with her husband’s sharing of the care burden. In other words, the higher the caring burden of adult children, the higher the mother's stress, which increases depression. At this time, the higher the their satisfaction with the husband's share of care in the path of mother's care burden and stress, the lower the mother's stress and, ultimately, the depression be alleviated. Conclusion: Programs that promote the mental health of married women heavily with the caring burden for their adult children, as well as those that improve social awareness regarding husbands' sharing of the care burden, should be implemented. Also, social welfare policy alternatives are needed at the national level to reduce the caring burden caused by adult children.

Keywords: married women, adult children care burden, stress, depression, satisfaction with husbands sharing of the care

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Authors: Tulika Bhattacharyya, Suhita Chopra Chatterjee

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

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

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Authors: Yeasir Arafat Alve, Nazmun Nahar, Salma BeguM

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Introduction / Rationale: Caregivers of stroke survivors have experienced financial, emotional, physical and mental anxiety and have influence of family bonding and social customs, where 80% of caregivers were women and majority of the patients were cared for by immediate family members for example a spouse, son/daughter, son-in-law, daughter-in-law, siblings and they are significantly feel burden as a caregiver. In Bangladeshi context, there has a limitation of knowledge about the level of caregiver burden. This study could be suggested the health professional to focus on the care giving stress to provide a better support to them and also it will be advisable to provide equivalent services for caregivers and their families. Objectives: The study finds out the socio-demographic image of caregivers of stroke survivors in Bangladesh as well as discovers the level of burden of caregiver of stroke survivor in relation to general strain, isolation, disappointment, emotional involvement and environment. The study will find out the association between level of burden among caregivers and onset of stroke of survivors & duration of care giving. As well as to determine the association between level of burden among caregivers and caregiver’s age, gender, occupation and caregiver’s relationship with stroke survivors. Method / Approach: The study is a non experimental cross-sectional study design where 151 participants were selected through purposive comprehensive sampling. Data were selected from occupational therapy outdoor and stroke rehab unit, CRP (Savar & Mirpur) where using the Caregiver Burden Scale (a structured questionnaire) with face to face interview. Results: Most of the caregivers (78.8%) of stroke survivors faced moderate level of burden in general strain (37.7%), isolation (27.2%) but in case of disappointment (60.3%) feel higher burden and lower burden in emotional involvement (9.9%) and environment (0.7%). Caregiver burden level was significantly associated with caregivers’ age (P=0.006), sex (P=0.002), occupation (p= 0.04), relationship with stroke survivors (P=0.02), care giving duration (P=0.000), care giving hours (P=0.009), and onset of stroke (P=0.000) of stroke survivors. Conclusion: The study findings revealed that most of the caregivers faced moderate burden where no environmental burden for them, this is possibly in case of Bangladeshi culture where people hospitable. Through this study, it was also found that there is a possibility to have the higher burden. Finally, it is being also suggested that appropriate advice and support may preserve care giving which eventually enables the survivors to live a longer and more fulfilling life in the community.

Keywords: caregiver, level of caregiver burden, stroke survivor, stroke rehab unit

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Authors: Yeaji Seok, Myung Kyung Lee

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

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

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Authors: Longtao He, Han Wu

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

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

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Authors: Nuraisyah H. Zulkifley, Suriani Ismail, Rosliza Abdul Manaf, Poh Y. Lim

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Taking care of a person with dementia (PWD) is one of the most problematic and challenging caregiving situations. Without proper support, caregiver would need to deal with the impact of caregiving that would lead to caregiver burden. One of the most common tools used to measure caregiver burden among caregivers of PWD is Zarit Burden Interview (ZBI). A systematic review has been conducted through searching Medline, Science Direct, Cochrane Library, Embase, PsycINFO, ProQuest, and Scopus databases to identify relevant articles that elaborate on intervention and outcomes on ZBI among informal caregiver of PWD. The articles were searched in October 2019 with no restriction on language or publication status. Inclusion criteria are randomized control trial (RCT) studies, participants were informal caregivers of PWD, ZBI measured as outcomes, and intervention group was compared with no intervention control or usual care control. Two authors reviewed and extracted the data from the full-text articles. From a total of 344 records, nine studies were selected and included in this narrative review, and eight studies were included in the meta-analysis. The types of interventions that were implemented to ease caregiver burden are psychoeducation, physical activity, psychosocial, and computer-based intervention. The meta-analysis showed that there is a significant difference in the mean score of ZBI (p = 0.006) in the intervention group compared to the control group after implementation of intervention. In conclusion, interventions such as psychoeducation, psychosocial, and physical activity can help to reduce the burden experiencing by the caregivers of PWD.

Keywords: dementia, informal caregiver, randomized control trial, Zarit burden interview

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Authors: Desiree Vandenberghe, Johan Albrecht

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Non-communicable diseases (NCDs) are responsible for the vast majority of deaths in the European Union (EU) and represent a large share of total health care spending. A future increase in this health and financial burden is likely to be driven by population ageing, lifestyle changes and technological advances in medicine. Without adequate prevention measures, this burden can severely threaten population health and economic development. To tackle this challenge, a correct assessment of the current burden of NCDs is required, as well as a projection of potential increases of this burden. The contribution of this paper is to offer perspective on the evolution of the NCD burden towards the future and to give an indication of the potential of prevention policy. A Non-Homogenous, Semi-Markov model for the EU was constructed, which allowed for a projection of the cost burden for the four main NCDs (cancer, cardiovascular disease, chronic respiratory disease and diabetes mellitus) towards 2030 and 2050. This simulation is done based on multiple baseline scenarios that vary in demand and supply factors such as health status, population structure, and technological advances. Finally, in order to assess the potential of preventive measures to curb the cost explosion of NCDs, a simulation is executed which includes increased efforts for preventive health care measures. According to the Markov model, by 2030 and 2050, total costs (direct and indirect costs) in the EU could increase by 30.1% and 44.1% respectively, compared to 2015 levels. An ambitious prevention policy framework for NCDs will be required if the EU wants to meet this challenge of rising costs. To conclude, significant cost increases due to Non-Communicable Diseases are likely to occur due to demographic and lifestyle changes. Nevertheless, an ambitious prevention program throughout the EU can aid in making this cost burden manageable for future generations.

Keywords: non-communicable diseases, preventive health care, health policy, Markov model, scenario analysis

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Authors: Lie-Fen Lin, Tzu-Hsuan Lin, Ching-Heng Lin

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Hospice care for terminally ill patients provides not only a better quality of life but also cost-saving benefits. However, the utilization of home-based hospice care (HBH care) remains low even for countries covered by National Health Insurance (NHI) programs in Taiwan. In the current commercial insurance policy, only hospital-based hospice benefits were covered. It may have an influence on the insureds chosen to receive end-of-life care in a hospitalized manner. Thus, how to propose a feasible method to advocate HBH care utilization rate of public health policies is an important issue. A total of 130,219 cancer decedents in the year 2011-2013 from the National Health Insurance Research Database (NHIRD) in Taiwan were included in this study. By adding a day volume pays benefits of HBH care as a commercial insurance rider, will provide alternative benefits for the insureds. A multiple-state Markov chain model was incorporated to estimate the transition intensities of patients in different states at the end of their lives (Non-hospice, HBH, hospital-based hospice), and the premiums were estimated. HBH care insurance benefits provide financial support and reduce the burden of care for patients. The rate-making of this product is very sensitive while the utilization rate is rising, especially for high ages. The proposed HBH care insurance is a feasible way to reduce the financial burden, enhance the care quality and family satisfaction of insureds. Meanwhile, insurance companies can participate in advocating a good medical policy to enhance the social image. In addition, the medical costs of NHI can reduce effectively.

Keywords: home-based hospice care, commercial insurance, Markov chain model, the day volume pays

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Authors: Chinlun Lai, Lunjyh Jiang

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Due to the heavy burden and pressure of caring for infants, an integrated automatic baby watching system based on IoT smart sensing and deep learning machine vision techniques is proposed in this paper. By monitoring infant body conditions such as heartbeat, breathing, body temperature, sleeping posture, as well as the surrounding conditions such as dangerous/sharp objects, light, noise, humidity and temperature, the proposed system can analyze and predict the obvious/potential dangerous conditions according to observed data and then adopt suitable actions in real time to protect the infant from harm. Thus, reducing the burden of the caregiver and improving safety efficiency of the caring work. The experimental results show that the proposed system works successfully for the infant care work and thus can be implemented in various life fields practically.

Keywords: baby care system, Internet of Things, deep learning, machine vision

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Authors: Samira Humaira Habib

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Diabetes has profound effects on individuals and their families. If diabetes is not well monitored and managed, then it leads to long-term complications and a large and growing cost to the health care system. Prevalence and socioeconomic burden of diabetes and relative return of investment for the elimination or the reduction of the burden are much more important regarding its cost burden. Various studies regarding the socioeconomic cost burden of diabetes are well explored in developed countries but almost absent in developing countries like Bangladesh. The main objective of the study is to estimate the total socioeconomic burden of diabetes. It is a prospective longitudinal follow up study which is analytical in nature. Primary and secondary data are collected from patients who are undergoing treatment for diabetes at the out-patient department of Bangladesh Institute of Research & Rehabilitation in Diabetes, Endocrine & Metabolic Disorders (BIRDEM). Of the 2115 diabetic subjects, females constitute around 50.35% of the study subject, and the rest are male (49.65%). Among the subjects, 1323 are controlled, and 792 are uncontrolled diabetes. Cost analysis of 2115 diabetic patients shows that the total cost of diabetes management and treatment is US$ 903018 with an average of US$ 426.95 per patient. In direct cost, the investigation and medical treatment at hospital along with investigation constitute most of the cost in diabetes. The average cost of a hospital is US$ 311.79, which indicates an alarming warn for diabetic patients. The indirect cost shows that cost of productivity loss (US$ 51110.1) is higher among the all indirect item. All constitute total indirect cost as US$ 69215.7. The incremental cost of intensive management of uncontrolled diabetes is US$ 101.54 per patient and event-free time gained in this group is 0.55 years and the life years gain is 1.19 years. The incremental cost per event-free year gained is US$ 198.12. The incremental cost of intensive management of the controlled group is US$ 89.54 per patient and event-free time gained is 0.68 years, and the life year gain is 1.12 years. The incremental cost per event-free year gained is US$ 223.34. The EuroQoL difference between the groups is found to be 64.04. The cost-effective ratio is found to be US$ 1.64 cost per effect in case of controlled diabetes and US$ 1.69 cost per effect in case of uncontrolled diabetes. So management of diabetes is much more cost-effective. Cost of young type 1 diabetic patient showed upper socioeconomic class, and with the increase of the duration of diabetes, the cost increased also. The dietary pattern showed macronutrients intake and cost are significantly higher in the uncontrolled group than their counterparts. Proper management and control of diabetes can decrease the cost of care for the long term.

Keywords: cost, cost-effective, chronic diseases, diabetes care, burden, Bangladesh

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Authors: Mubita Namuyamba

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Despite an increase in the number of cancer programs and partnerships in cancer care provision, the burden of cancer in Zambia is increasingly having a significant impact on morbidity and mortality rates. The increase in cancer morbidity and mortality rates has given rise to psychological and psycho social implications (PPsI) in cancer care. Cancer patients, care givers and health care providers are faced with a multitude of PPsIs in cancer care that mainly impact negatively on the management of cancer patients. The study adopted a case study design and was purposively conducted at the Cancer Diseases Hospital in Lusaka (Zambia) after obtaining ethical clearance from the Ethics committee. The sample for this study included 70 cancer patients, 20 care givers and 5 hospital staff (4 nurses and 1 doctor). Data was collected using interviews guides, focus group discussion guides and questionnaires respectively. The qualitative data was analysed thematically. The various psychological and psychosocial challenges that conspire to deter the provision of effective cancer care nursing and improved methods of minimizing the psychological and psychosocial implications in cancer care are the products of this study.

Keywords: case study, enquiry, psychological and psycho social aspects, Zambia

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Authors: Abrar Noorain, Zeinab Amara, Sulaf Abdelaziz

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Background: Diabetic foot disease imposes a financial burden on diabetic patients and healthcare services. In Sudan, diabetic foot ulcer prevalence reached 18.1%. This study aims to assess the knowledge, attitudes, and practices and the correlation between the level of foot care knowledge and self-care practices among diabetic patients in Sudan. Methodology: In a cross-sectional study involving 262 patients with type 1 and type 2 diabetes attending diabetic clinics in three primary care centers in Khartoum, Sudan, during September to November 2022, information regarding participants sociodemographic status, foot care knowledge, attitudes, and practices was gathered using a validated, structured questionnaire in a face-to-face interview method. These data were analyzed using the statistical package for the social sciences (SPSS) 22. Results: The patients’ mean age was 54.9 years, with a female predominance (56%). Of the participants, 37% had diabetes mellitus for over ten years. On the topic of foot care, 35.5% of patients showed good knowledge, and 76% were aware of the risk of reduced foot sensation. In relation to nail care, only 19% knew how to cut nails correctly. Conclusion: Knowledge, attitudes, and practices about diabetic foot care are substandard. There is a positive correlation between foot care knowledge and self-care practices. Hence, educating diabetic patients with foot care knowledge through an awareness program and the characteristics of diabetic shoes may improve self-care practices.

Keywords: DM, DFD, DFU, PHC, SPSS

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Authors: Alex Hughes

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Patients with advanced heart failure develop specific palliative care needs due to the progressive symptom burden and unpredictable disease trajectory. NICE guidance advises that palliative care should be provided to patients with both cancer and non-cancer conditions as and when required. However, there is some way to go before this guidance is consistently and effectively implemented nationwide in conditions such as heart failure. The Ambitions for Palliative and End of Life Care: A national framework for local action in England provides a set of foundations and ambitions which outline a vision for what high-quality palliative and end-of-life care look like in England. This poster aims to critically consider how to improve access to palliative care for heart failure patients in England by analysing the foundations taken from this framework to generate specific recommendations using Soft Systems Methodology (SSM). The eight foundations analysed are: ‘Personalised care planning’, ‘Shared records’, ‘Evidence and information’, ‘Involving, supporting and caring for those important to the dying Person’, ‘Education and training’, ‘24/7 access’, ‘Co-design’ and ‘Leadership.’ A number of specific recommendations have been generated which highlight a need to close the evidence-policy gap and implement policy with sufficient evidence. These recommendations, alongside the creation of an evidence-based national strategy for palliative care and heart failure, should improve access to palliative care for heart failure patients in England. Once implemented, it will be necessary to evaluate the effect of these proposals to understand if access to palliative care for heart failure patients actually improves.

Keywords: access, health systems, heart failure, palliative care

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Authors: Guler Duru Asiret, Cemile Kutmec Yilmaz, Gulcan Bagcivan, Tugce Turten Kaymaz

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This descriptive study was conducted to determine the relationship between caregiver burden and life satisfaction who give home care to elderly individuals. The sample was recruited from the internal medicine unit and palliative unit of a state hospital located in Turkey on June 2016-2017. The study sample consisted of 231 primary caregiver family member, who met the eligibility criteria and agreed to participate in the study. The inclusion criteria were as follows: inpatient’s caregiver, primary caregiver for at least 3 months, at least 18 years of age, no communication problem or mental disorder. Data were gathered using an Information Form prepared by the researchers based on previous literature, the Zarit Burden Interview (ZBI), and the Satisfaction with Life Scale (SWLS). The data were analyzed using IBM SPSS Statistics software version 20.0 (SPSS, Chicago, IL). The descriptive characteristics of the participant were analyzed using number, percentage, mean and standard deviation. The suitability of normal distribution of scale scores was analyzed using Kolmogorov-Smirnov and Shapiro-Wilk test. Relationships between scales were analyzed using Spearman’s rank-correlation coefficient. P values less than 0.05 were considered to be significant. The average age of the caregivers was 50.11±13.46 (mean±SD) years. Of the caregivers, 76.2% were women, 45% were primary school graduates, 89.2% were married, 38.1% were the daughters of their patients. Among these, 52.4% evaluated their income level to be good. Of them, 53.6% had been giving care less than 2 years. The patients’ average age was 77.1±8.0 years. Of the patients, 55.8% were women, 56.3% were illeterate, 70.6% were married, and 97.4% had at least one chronic disease. The mean Zarit Burden Interview score was 35.4±1.5 and the Satisfaction with Life Scale score was 20.6±6.8. A negative relationship was found between the patients’ score average on the ZBI, and on the SWLS (r= -0.438, p=0.000). The present study determined that the caregivers have a moderate caregiver burden and the life satisfaction. And the life satisfaction of caregivers decreased as their caregiver burden increase. In line with the results obtained from the research, it is recommended that to increase the effectiveness of discharge training, to arrange training and counseling programs for caregivers to cope with the problems they experienced, to monitor the caregivers at regular intervals and to provide necessary institutional support.

Keywords: caregiver burden, family caregivers, nurses, satisfaction

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Authors: Kerdsiri Hongthai, Darunee Jongudomkarn, Rutja Phuphaibul

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In Thailand, many adults in rural areas migrate to seek employ¬ment resulting in skipped-generation family where grandparents care for grandchildren with no other adults present. This is a preliminary study using qualitative case study methods, aimed to explore the situations of older adult grandparents' experiences in skipped-generation family in North-East of Thailand. Data were collected by in-depth inter¬views with 6 grandparents living in skipped-generation families; 5 females and 1 males grandparents, aged 62-75, some of them have diabetes mellitus, hypertension, during November to December, 2017. The finding themes are: ‘Caught up in the middle’: the older adults were pleased to have grandchildren but, at the same time, acknowledge the burden that this placed on them, especially when the migrant children failed to send enough money back to support the family. ‘Getting bad health’: they reported to be fatigued and stressed due to burden of caring for their grandchildren without support. This situation can aggravate problems of poor health status and be worsening economic status of the grandparents. In some cases of deprivation, the grandparents feel that having to be the sole care providers of their grandchildren can negative adversely affect their mental status. It is important to find out in other sectors similar to Thailand and lead to more in-depth research to answer the research questions about policy and social support in skipped-generation family in the future.

Keywords: older adult grandparents, experiences, principle care giver, skipped-generation family

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Authors: Kingston Rajiah, Mari Kannan Maharajan, Si Jen Yeen, Sara Lew

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Parkinson’s disease (PD) is a progressive neurodegenerative disorder with evolving layers of complexity. Both motor and non-motor symptoms of PD may affect patients’ quality of life (QoL). Life expectancy for an individual with Parkinson’s disease depends on the level of care the individual has access to, can have a direct impact on length of life. Therefore, improvement of the QoL is a significant part of therapeutic plans. Patients with PD, especially those who are in advanced stages, are in great need of assistance, mostly from their family members or caregivers in terms of medical, emotional, and social support. The role of a caregiver becomes increasingly important with the progression of PD, the severity of motor impairment and increasing age of the patient. The nature and symptoms associated with PD can place significant stresses on the caregivers’ burden. As the prevalence of PD is estimated to more than double by 2030, it is important to recognize and alleviate the burden experienced by caregivers. This study focused on the impact of the clinical features on the QoL of PD patients, and of their caregivers. This study included PD patients along with their caregivers and was undertaken at the Malaysian Parkinson's Disease Association from June 2016 to November 2016. Clinical features of PD patients were assessed using the Movement Disorder Society revised Unified Parkinson Disease Rating Scale (MDS-UPDRS); the Hoehn and Yahr Staging of Parkinson's Disease were used to assess the severity and Parkinson's disease activities of daily living scale were used to assess the disability of Parkinson’s disease patients. QoL of PD patients was measured using the Parkinson's Disease Questionnaire-39 (PDQ-39). The revised version of the Zarit Burden Interview assessed caregiver burden. At least one of the clinical features affected PD patients’ QoL, and at least one of the QoL domains affected the caregivers’ burden. Clinical features ‘Saliva and Drooling’, and ‘Dyskinesia’ explained 29% of variance in QoL of PD patients. The QoL domains ‘stigma’, along with ‘emotional wellbeing’ explained 48.6% of variance in caregivers’ burden. Clinical features such as saliva, drooling and dyskinesia affected the QoL of PD patients. The PD patients’ QoL domains such as ‘stigma’ and ‘emotional well-being’ influenced their caregivers’ burden.

Keywords: carers, quality of life, clinical features, Malaysia

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Authors: Walter Rafael Ramos Villanueva

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The overwhelming majority of scholarship on David Chariandy’s novel Soucouyant focuses on how Adele’s dementia represents the preservation of “cultural memory” and the perniciousness of “historical trauma.” However, by metaphorizing Adele’s mental condition, these critics risk treating her dementia as mostly figurative, and they thus elide a more detailed discussion of the literal ramifications of her dementia diagnosis. To move beyond these readings, then, my paper will approach Adele’s disorder as a literal medical condition and explore how her caregiving needs affect not only her but also those around her. Soucouyant subverts traditional caregiving narratives by depicting the difficult and typically invisible labour of informal caregiving that is undertaken by the families and friends of those who are ill or otherwise disabled. Because Adele’s family is unable to access proper public healthcare resources within the community, the burden of care falls upon the protagonist and his brother, who become “parentified children.” Parentified children, according to Nancy D. Chase, are “parents to their parents, and fulfill this role at the expense of their own developmentally appropriate needs and pursuits.” The novel provides a depiction of informal caregiving that is multi-faceted and asks us to question why is it exactly that we place the burden of care on those who are not equipped to handle such pressures instead of putting the onus on the government and the public healthcare system to take care of its most vulnerable members. Ageing Studies scholar Larry Polvika notes that although policymakers often offer “pious expressions of appreciation” and acknowledge that informal caregiving is “the backbone of our long-term care system,” governmental support for these caregivers remains inadequate. It is my belief that, by showcasing the struggles of informal caregivers, Chariandy’s text combats this dangerous and empty political rhetoric.

Keywords: caregiving, dementia, literature, parentified children

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Authors: Saima Shafiq, Najma Iqbal Malik

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This study was aimed to explore the relationship of perceived stigma, perception of burden and psychological distress among parents of intellectually disabled children. The study also aimed to explore the moderating role of perceived social support on all the variables of the study. The sample of the study comprised of (N = 250) parents of intellectually disabled children. The present study utilized the co-relational research design. It consists of two phases. Phase-I consisted of two steps which contained the translation of two scales that were used in the present study and tried out on the sample of parents (N = 70). The Affiliated Stigma Scale and Care Giver Burden Inventory were translated into Urdu for the present study. Phase-1 revealed that translated scaled entailed satisfactory psychometric properties. Phase -II of the study was carried out in order to test the hypothesis. Correlation, linear regression analysis, and t-test were computed for hypothesis testing. Hierarchical regression analysis was applied to study the moderating effect of perceived social support. Findings revealed that there was a positive relationship between perceived stigma and psychological distress, perception of burden and psychological distress. Linear regression analysis showed that perceived stigma and perception of burden were positive predictors of psychological distress. The study did not show the moderating role of perceived social support among variables of the present study. The major limitation of the study is the sample size and the major implication is awareness regarding problems of parents of intellectually disabled children.

Keywords: perceived stigma, perception of burden, psychological distress, perceived social support

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Authors: Koko Wangjam, Naresh Kumar Sharma

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The concern for most public health policies and decision- makers is the equitable distribution of health care resource of the nation. Also, in public health care system, the primary aim is assuaging the burden of the disease. Objective: This paper captures and evaluates some important theories in equity in health with its relevance with the ART program in India. Methodology: The paper is exploratory and descriptive study based on secondary data. The sources of secondary data are published official reports from NACO (National AIDS Control Organisation), United Nations AIDS Program (UNAIDS), World Health Organisation (WHO) etc. Observation: The roll-out of the ART program in 2004 by the Govt. of India made a paradigm shift in HIV/AIDS scenario in the country. Conclusion: There are many theoretical injunctions in most of the principles and approaches in existing theories of health equity. The enervation of HIV infection by taking ART drugs had helped in curbing the prevalence and the fact that it is provided at free of cost has proven this program to be an epitome in distributive justice in public health.

Keywords: art program, burden of the disease, health equity, hiv/aids

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Authors: Jenny Fairthorne, Yuka Mori, Helen Leonard

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Background: Primary care-givers of children with autism spectrum disorder (ASD) or intellectual disability (ID) have poorer health and quality of life (QoL) than primary care-givers (hereafter referred to as just care-givers) of typically developing children. We aimed to review original research which described factors impacting the health of care-givers of children with ASD or ID and to discuss how these factors might influence care-giver health. Methods: We searched Web of Knowledge, Medline, Scopus and Google Scholar using selections of words from each of three groups. The first comprised terms associated with ASD and ID and included autism, pervasive development disorder, intellectual disability, mental retardation, disability, disabled, Down and Asperger. The second included terms related to health such as depression, physical, mental, psychiatric, psychological and well-being. The third was terms related to care-givers such as mother, parent and care-giver. We included an original paper in our review if it was published between 1st January 1990 and 31st December, 2016, described original research in a peer-reviewed journal and was written in English. Additional criteria were that the research used a study population of 15 persons or more; described a risk or protective factor for the health of care-givers of a child with ASD, ID or a sub-type (such as ASD with ID or Down syndrome). Using previous research, we developed a simple and objective five-level tool to assess the strength of evidence provided by the reviewed papers. Results: We retained 33 papers. Factors impacting primary care-giver health included child behaviour, level of support, socio-economic status (SES) and diagnostic issues. Challenging child behaviour, the most commonly identified risk factor for poorer care-giver health and QoL was reported in ten of the studies. A higher level of support was associated with improved care-giver health and QoL. For example, substantial evidence indicated that family support reduced care-giver burden in families with a child with ASD and that family and neighbourhood support was associated with improved care-giver mental health. Higher socio-economic status (SES) was a protective factor for care-giver health and particularly maternal health. Diagnostic uncertainty and an unclear prognosis are factors which can cause the greatest concern to care-givers of children with ASD and those for whom a cause of their child’s ID has not been identified. We explain how each of these factors might impact caregiver health and how they might act differentially in care-givers of children with different types of ASD or ID (such as Down syndrome and ASD without ID). Conclusion: Care-givers of children with ASD may be more likely to experience many risk factors and less likely to experience the protective factors we identified for poorer mental health. Interventions to reduce risk factors and increase protective factors could pave the way for improved care-giver health. For example, workshops to train care-givers to better manage challenging child behaviours and earlier diagnosis of ASD (and particularly ASD without ID) would seem likely to improve care-giver well-being. Similarly, helping to expand support networks might reduce care-giver burden and stress leading to improved health.

Keywords: autism, caregivers, health, intellectual disability, mothers, review

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Authors: Dilson Subedi

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Current transformers are an integral part of power system because it provides a proportional safe amount of current for protection and measurement applications. However, due to upgradation of electromechanical relays to numerical relays and electromechanical energy meters to digital meters, the connected burden, which defines some of the CT characteristics, has drastically reduced. This has led to the system experiencing high currents damaging the connected relays and meters. Since the protection and metering equipment's are designed to withstand only certain amount of current with respect to time, these high currents pose a risk to man and equipment. Therefore, during such instances, the CT saturation characteristics have a huge influence on the safety of both man and equipment and on the reliability of the protection and metering system. This paper shows the effectiveness of a bank of parallel connected resistors, as a burden compensation technique, in compensating the burden of under-burdened CT’s. The response of the CT in the case of failure of one or more resistors at different levels of overcurrent will be captured using the LabVIEWTM data acquisition hardware (DAQ). The analysis is done on the real-time data gathered using LabVIEWTM. Variation of current transformer saturation characteristics with changes in burden will be discussed.

Keywords: accuracy limiting factor, burden, burden compensation, current transformer

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Authors: Davod Ahmadigheidari, Isabel Alvarez, Kate Sinclair, Marnie Davidson, Patrick Cortbaoui, Hugo Melgar-Quiñonez

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The burden of collecting water tends to disproportionately fall on women and girls in low-income countries. Specifically, women spend between one to eight hours per day fetching water for domestic use in Sub-Saharan Africa. While there has been research done on the global time burden for collecting water, it has been mainly focused on water quality parameters; leaving the relationship between water fetching and health outcomes understudied. There is little available evidence regarding the relationship between water fetching and maternal child care practices. The main objective of this study was to help fill the aforementioned gap in the literature. Data from two surveys in Ethiopia and Malawi conducted by CARE Canada in 2016-2017 were used. Descriptive statistics indicate that women were predominantly responsible for collecting water in both Ethiopia (87%) and Malawi (99%) respectively, with the majority spending more than 30 minutes per day on water collection. With regards to child care practices, in both countries, breastfeeding was relatively high (77% and 82%, respectively); and treatment for malnutrition was low (15% and 8%, respectively). However, the same consistency was not found for weighing; in Ethiopia only 16% took their children for weighting in contrast to 94% in Malawi. These three practices were summed to create one variable for regressions analyses. Unadjusted logistic regression findings showed that only in Ethiopia was time fetching water significantly associated with child care practices. Once adjusted for covariates, this relationship was no longer found to be significant. Adjusted logistic regressions also showed that the factors that did influence child care practices differed slightly between the two countries. In Ethiopia, a lack of access to community water supply (OR= 0.668; P=0.010), poor attitudes towards gender equality (OR= 0.608; P=0.001), no access to land and (OR=0.603; P=0.000), significantly decreased a women’s odd of using positive childcare practices. Notably, being young women between 15-24 years (OR=2.308; P=0.017), and 25-29 (OR=2.065; P=0.028) increased probability of using positive childcare practices. Whereas in Malawi, higher maternal age, low decision-making power, significantly decreased a women’s odd of using positive childcare practices. In conclusion, this study found that even though amount of time spent by women fetching water makes a difference for childcare practices, it is not significantly related to women’s child care practices when controlling the covariates. Importantly, women’s age contributes to child care practices in Ethiopia and Malawi.

Keywords: time fetching water, community water supply, women’s child care practices, Ethiopia, Malawi

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Authors: Dan Richard D. Fernandez

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This study determined the perspectives of community health workers’ perspectives in the sustainability of primary health care. Eight community health workers, two community officials and a rural health midwife in a rural community in the in the Philippines were enjoined to share their perspectives in the sustainability of primary health care. The study utilized the critical research method. The critical research assumes that there are ‘dominated’ or ‘marginalized’ groups whose interests are not best served by existing societal structures. Their experiences highlighted that the challenges of their role include unkind and uncooperative patients, the lack of institutional support mechanisms and conflict of their roles with their family responsibilities. Their most revealing insight is the belief that primary health care is within their grasp. Finally, they believe that the burden to sustain primary health care rests on their shoulders alone. This study establishes that Multi-stakeholder participation is and Gender-sensitivity is integral to the sustainability of Primary Health Care. It also observed that the ingrained Expert-Novice or Top-down Management Culture and the marginalisation of BHWs within the system is a threat to PHC sustainability. This study also recommends to expand the study and to involve the local government units and academe in lobbying the integration of gender-sensitivity and multi-stake participatory approaches to health workforce policies. Finally, this study recognised that the CHWs’ role is indispensable to the sustainability of primary health care.

Keywords: community health workers, multi-stakeholder participation, sustainability, gender-sensitivity

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Authors: Odeh Ibn Iganga

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The issue of foreign debt, debt crisis or the concept of Third World debt burden generally gained prominence after the end of the cold war which pitched the United States and the former Soviet Union against each other in an ideological supremacy tussle. Before then however, Third World Countries (TWCs) enjoyed a relative economic resilience and stability and ostensibly friendly relations with the leaders of the polarized blocks in a way to garner supports for, and as an instrument of strengthening and expanding influence and power of the leaders of the two blocs, and achieve their goals. Consequently, the Third World concept lost its political relevance and usage perhaps, too, its economic comportment, and eventually became phraseology synonymous with developing countries bedeviled with debt crisis and struggling to emerge from debt burden, economic underdevelopment and poverty. Since then, also, particularly during the last two decades, the issue of Third World debt burden, which is currently posing significant problems, has a considerable attracted public policy and academic scrutiny. Third World debt burden thus is not a recent phenomenon but is a result of, and due to, pursuance of foreign aid from countries of the North which had, from the start, created the condition of economic subservience and master-servant relationship that could generate persistent seeking and lobbing for foreign aids through borrowing, thus tying down in a perpetual manner, most of the Third World Countries to underdevelopment, dependency and poverty. The interest of this paper, therefore, is to examine the causes, costs and or the implications of the debt burden on the economies of the Third World Countries, review some general solutions to the debt burden as well as offering suggestions as a way out of the doldrums.

Keywords: third world, debt burden, debt crisis, economic development and underdevelopment

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Authors: Aditya Manna

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Introduction: As in any developing countries state of West Bengal in India has a huge burden of cancer patients in advanced stage coming from rural area where awareness regarding the usefulness of palliative care in rather poor. Objective: Our goal is to give a pain free good quality of life in these advanced stage cancer patients. Objective of this study is to identify the main difficulties in achieving the above goal in a rural village setting in India. Method: Advanced cancer patients in need of palliative care in various villages in of rural India were selected for this study. Their symptoms and managements in that rural surroundings were evaluated by an NGO (under the guidance of a senior palliative care specialist) working in that area. An attempt was made to identify the main obstacles in getting proper palliative care in a rural setting. Results: Pain, fatigue are the main symptoms effecting these patients. In most patients pain and other symptoms control were grossly inadequate due to lack of properly trained manpower in the rural India. However regular homecare visits by a group of social workers were of immense help in the last few months of life. NGO team was well guided by a palliative care specialist. Conclusion: There is a wide gap of trained manpower in this filled in rural areas of India. Dedicated groups from rural area itself need encouragement and proper training, so that difficult symptoms can be managed locally along with necessary social and psychological support to these patients.

Keywords: palliative care, NGO, rural India, home care

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Authors: A. M. U. P. Kumari, Vidanapathirana. J., Amarasekara J., Karunanayaka L.

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Leptospirosis is a zoonotic infection with significant morbidity and mortality. As an occupational disease, it has become a global concern due to its disease burden in endemic countries and rural areas. The aim of this study was to assess disease burden in terms of DALYs of leptospirosis. A hospital-based descriptive cross-sectional study was conducted using 450 clinically diagnosed leptospirosis patients admitted to base and above hospitals in Monaragala district, Sri Lanka, using a pretested interviewer administered questionnaire. The patients were followed up till normal day today life after discharge. Estimation of DALYs was done using laboratory confirmed leptospirosis patients. Leptospirosis disease burden in the Monaragala district was 44.9 DALYs per 100,000 population which includes 33.18 YLLs and 10.9 YLDs. The incidence of leptospirosis in the Monaragala district during the study period was 59.8 per 100,000 population, and the case fatality rate (CFR) was 1.5% due to delay in health seeking behaviour; 75% of deaths were among males due to multi organ failure. The disease burden of leptospirosis in the Moneragala district was significantly high, and urgent efforts to control and prevent leptospirosis should be a priority.

Keywords: human leptospirosis, disease burden, disability adjusted life Years, Sri Lanka

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Authors: J. E. Appel, R. N. Bouwmeester, L. Crombach, K. Georgieva, N. O’Shea, T. I. van Rijssel, L. Wingens

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The Netherlands has a unique and progressive euthanasia law. Even people with advanced neurodegenerative diseases, like dementia, can request euthanasia when an Advanced Euthanasia Directive (AED) was written. Although the law sets some guidelines, in practice many complexities occur. Especially doctors experience difficult situations, as they have to decide whether euthanasia is justified. Research suggests that this leads to an emotional burden for them, due to feelings of isolation, fear of prosecution, as well as pressures from patient, family, or society. Existing literature, however, failed to address problems arising in dementia cases in particular, as well as possible sources of support. In order to investigate these issues, semi-structured in-depth interviews with 20 Dutch general practitioners and elderly care physicians will be conducted. Results are expected to be obtained by the end of December 2017.

Keywords: dementia, euthanasia, general practitioners, elderly care physicians, palliative care

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Authors: Rahmayanti, Theresia Simatupang, Ronald H. Sianturi

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Corruption criminal act develops rapidly since in the transition era there is weakness in law. Consequently, there is an opportunity for a few people to do fraud and illegal acts and to misuse their positions and formal functions in order to make them rich, and the criminal acts are done systematically and sophisticatedly. Some people believe that legal provisions which specifically regulate the corruption criminal act; namely, Law No. 31/1999 in conjunction with Law No. 20/2001 on the Eradication of Corruption Criminal Act are not effective any more, especially in onus probandi (the burden of proof) on corruptors. The research was a descriptive analysis, a research method which is used to obtain description on a certain situation or condition by explaining the data, and the conclusion is drawn through some analyses. The research used judicial normative approach since it used secondary data as the main data by conducting library research. The system of the burden of proof, which follows the principles of reversal of the burden of proof stipulated in Article 12B, paragraph 1 a and b, Article 37A, and Article 38B of Law No. 20/2001 on the Amendment of Law No. 31/1999, is used only as supporting evidence when the principal case is proved. Meanwhile, how to maximize the implementation of the burden of proof on the perpetrators of corruption criminal act in which the public prosecutor brings a corruption case to Court, depends upon the nature of the case and the type of indictment. The system of burden of proof can be used to eradicate corruption in the Court if some policies and general principles of justice such as independency, impartiality, and legal certainty, are applied.

Keywords: burden of proof, perpetrator, corruption criminal act

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Authors: J. Raub, H. Schillok, L. Kaupe, C. Jung-Sievers, G. Pitschel-Walz, M. Bühner, J. Gensichen, F. D. Pokal-Gruppe

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Introduction: In Germany, depression ranks among the top ten diseases with the highest disease burden and often occurs with comorbidities. Collaborative Care (CC), a concept developed in the United States for the primary care management of chronic diseases, has been identified as an efficient model for the treatment of depression in general medicine. A recent meta-analysis highlights research gaps regarding CC in patients with psychiatric multimorbidity. The highest prevalence of psychiatric comorbidities in depression is observed in anxiety disorders, post-traumatic stress disorder (PTSD), and substance use disorders. Methods: We conducted a literature search following the PRISMA guidelines with three components: Collaborative Care, Depression and randomized controlled trial on the common databases. We focused on the examination of psychiatric comorbidities in depression, specifically Posttraumatic Stress Disorder (PTSD) and Substance Use Disorder (SUD). Results: During the screening process, we identified nine relevant articles related to PTSD, the number of articles related to Substance Use Disorder (SUD) was ten. We examined a total of 8,634 individuals. Our literature review did not reveal any overall significant superiority of the Collaborative Care model compared to Usual Care in patients with depression with comorbid Substance Use Disorder (SUD) or Posttraumatic Stress Disorder (PTSD). Discussion: Five studies demonstrate a faster and statistically significant improvement in depression outcomes among patients with Substance Use Disorder (SUD) and Posttraumatic Stress Disorder (PTSD). Currently, several randomized controlled trials on the topic of Collaborative Care in depression with psychiatric comorbidity are ongoing, such as miCare, Claro and COMET.

Keywords: Depression, primary care, collaborative care, PTSD, Substance use Disorder

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Authors: Germans Natuhwera, Peter Ellis, Acuda Wilson, Anne Merriman, Martha Rabwoni

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Objective: The aim of the study was to diagnose the socio-economic burden and impact of a diagnosis of cervical cancer (CC) in rural women in the context of low-resourced country Uganda, using a phenomenological enquiry. Methods: This was a multi-site phenomenological inquiry, conducted at three hospice settings; Mobile Hospice Mbarara in southwestern, Little Hospice Hoima in Western, and Hospice Africa Uganda Kampala in central Uganda. A purposive sample of women with a histologically confirmed diagnosis of CC was recruited. Data was collected using open-ended audio-recorded interviews conducted in the native languages of participants. Interviews were transcribed verbatim in English, and Braun and Clarke’s (2019) framework of thematic analysis was used. Results: 13 women with a mean age of 49.2 and age range 29-71 participated in the study. All participants were of low socioeconomic status. The majority (84.6%) had advanced disease at diagnosis. A fuller reading of transcripts produced four major themes clustered under; (1) socioeconomic characteristics of women, (2) impact of CC on women’s relationships, (3) disrupted and impaired activities of daily living (ADLs), and (4) economic disruptions. Conclusions: A diagnosis of CC introduces significant socio-economic disruptions in a woman’s and her family’s life. CC causes disability, impairs the woman and her family’s productivity hence exacerbating levels of poverty in the home. High and expensive out-of-pocket expenditure on treatment, investigations, and transport costs further compound the socio-economic burden. Decentralizing cancer care services to regional centers, scaling up screening services, subsidizing costs of cancer care services, or making cervical cancer care treatment free of charge, strengthening monitoring mechanisms in public facilities to curb the vice of healthcare workers soliciting bribes from patients, increased mass awareness campaigns about cancer, training more healthcare professionals in cancer investigation and management, and palliative care, and introducing an introductory course on gynecologic cancers into all health training institutions are recommended.

Keywords: activities of daily living, cervical cancer, out-of-pocket, expenditure, phenomenology, socioeconomic

Procedia PDF Downloads 186