Search results for: orphans and primary caregivers

Authors: M. Petunia Tsweleng

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Statement of the Problem: Research and aid organisations report that children and adolescents orphaned due to HIV and AIDS are particularly vulnerable as they are often exposed to negative effects of both HIV and AIDS and orphanhood. Without much-needed parental love, care, and support, these children and adolescents are at risk of poor developmental outcomes. A cursory look at the available literature on AIDS-orphaned adolescents, and the quality of caregiving relationships with caregivers, shows that this is a relatively under-researched terrain. This article is a review of the literature on caregiving relationships of adolescents orphaned due to AIDS and their current primary caregivers. It aims to inform community programmes and policymakers by providing insight into the qualities of these relationships. Methodology: A comprehensive search of both peer-reviewed and non-peer-reviewed literature was conducted through EBSCOhost, SpringLINK, PsycINFO, SAGE, PubMed, Elsevier ScienceDirect, JSTOR, Wiley Online Library databases, and Google Scholar. The combination of keywords used for the search were: (caregiving relationships); (orphans OR AIDS orphaned children OR AIDS orphaned adolescents); (primary caregivers); and (quality caregiving); (orphans); (HIV and AIDS). The search took place between 24 January and 28 February 2022. Both qualitative and quantitative research studies published between 2010 and 2020 were reviewed. However, only qualitative studies were selected in the end -as they presented more profound findings concerning orphan-caregiver relationships. The following three stages of meta-synthesis analysis were used to analyse data: refutational syntheses, reciprocal syntheses, and line of argument. Results: The search resulted in a total of 2090 titles, of which 750 were duplicates and therefore subtracted. The researcher reviewed all the titles and abstracts of the remaining 1340 articles. 329 articles were identified as relevant, and full texts were reviewed. Following the review of the full texts, 313 studies were excluded for relevance and 4 for methodology. Twelve articles representing 11 studies fulfilled the inclusion criteria and were selected. These studies, representing different countries across the globe, reported similar forms of hardships experienced by caregivers economically, psychosocially, and healthwise. However, the studies also show that the majority of caregivers found contentment in caring for orphans, particularly grandmother carers, and were thus enabled to provide love, care, and support despite hardships. This resulted in positive caregiving relationships -as orphans fared well emotionally and psychosocially. Some relationships, however, were found negative due to unhealed emotional wounds suffered by both caregivers and orphans and others due to the caregiver’s lack of interest in providing care. These findings were based on self-report data from both orphans and caregivers. Conclusion: Findings suggest that intervention efforts need to be intensified to: alleviate poverty in households that are affected by HIV and AIDS pandemic, strengthen the community psychosocial support programmes for orphans and their caregivers; and integrate clinical services with community programmes for the healing of emotional and psychological wounds. Contributions: Findings inform community programmes and policymakers by providing insight into the qualities of the mentioned relationships as well as identifying factors commonly associated with high-quality caregiving and poor-quality caregiving.

Keywords: systematic review, caregiving relationships, orphans and primary caregivers, AIDS

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Authors: Mmapula Petunia Tsweleng

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This qualitative study presents an exploration and findings thereof the quality of primary caregiving relationships between adolescents orphaned through Acquired Immune Deficiency Syndrome (AIDS) and their grandmothers. This exploration was based on in-depth narratives of 6 stakeholders who provided community-based psychosocial support services to children and families affected by AIDS. The narratives show that grandmothers provided high-quality parental care and support to the orphans. Furthermore, stakeholders categorised grandmother caregiving as genuine. Findings also show that the orphans thrived emotionally, socially, and cognitively and performed well academically. However, it was also identified that grandmothers’ caregiving had elements of overprotectiveness as well as susceptibility to manipulation -which appeared to be a threat to the positive development of the orphans. Relevant interventions, with a special focus on strengthening grandmother caregiving, are needed. Special attention should be on equipping grandmothers with a better understanding of adolescent behaviours and abilities to provide appropriate monitoring and supervision.

Keywords: adolescent orphans, AIDS, caregiving relationships, grandmothers

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

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

Keywords: illness representations, injury, caregivers, comparative study

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Authors: Ivonne N. Pérez-Sánchez. María L. Rascón- Gasca, Angélica Riveros-Rosas, Rebeca Robles García

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Introduction: Primary caregivers of cancer patients have health problems related to their lack of time, stress, and fiscal strain. Their health problems could affect their patients’ health and also increase the expenses in public health. Aim: To describe self-care and risk behaviors in a sample of Mexican primary caregiver and the relation of these behaviors with emotional distress (caregiver burden, anxiety and depression symptoms), coping and sociodemographic variables. Method: Participated in this study 173 caregivers of a third level reference medical facility (age: M=49.4, SD=13.5) females 78%, males 22%, 57.5% were caregivers of patients with terminal cancer (CPTC), and 40.5% were caregivers of patients on oncology treatment (CPOT). Results: The 75.7% of caregivers reported to have had health problem in last six months as well as several symptoms which were related to emotional distress, these symptoms were more frequently between CPTC and female caregivers. A half (47.3%) of sample reported have had difficulties in caring their health; these difficulties were related to emotional distress and lower coping, more affected caregivers were who attend male patients and CPTC. The 76.8% of caregivers had health problems in last six months, but 26.5% of them waited to search medical care until they were very sick, and 11% didn't do it. Also, more than a half of sample (56.1%) admitted to have risk behaviors as drink alcohol, smoke or overeating for feeling well, these caregivers showed high emotional distress and lower coping. About caregivers healthy behaviors, 80% of them had a hobby; 27.2% do exercise usually and between 12% to 60% did medical checkups (glucose tests, blood pressure and cholesterol tests, eye exams and watched their weight), these caregivers had lower emotional distress and high coping, some variables related health behaviors were: care only one patient or a female patient and be a CPOT, social support, high educational level and experience as a caregiver in past. The half of caregivers were worrying to develop cancer in the future; this idea was 2.5 times more frequent in caregiver with problems to care their health. Conclusions: The results showed a big proportion of caregivers with medical problems. High emotional distress and low coping were related to physical symptoms, risk behaviors, and low self-care; poor self-care was frequently even in caregiver who have chronic illness.

Keywords: cancer, primary caregiver, risk behaviors, self-care

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Authors: Riya Kartikee, Uday Shankar

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Background –.Happiness refers to a range of the balance of positive and pleasant emotions of joy, pride, contentment, gratitude, and living with ethics. Happiness is an experience combined with a sense that one’s life is good, meaningful, and worth a while, but in the context of orphans who have lost their birthgivers, their parents who play an important role in bringing necessities and comfort to them, but many terms of the above phases are missing in the life of orphan So, stress increases because of lack of love, attention, sympathy, care, they experience many kind of trauma and also in some cases their lives get worst as they face some physiological abuse, sexual abuse, they are forced to have stress at a not only mentally but physically also in the context of Patna, Bihar where many people are below poverty line, lack of resources is a normal condition for the Orphanages.AIM- The present study was intended to study the level of Happiness among the orphans of Patna District, also it was attempted to find the role of happiness in their lives as an individual.Method- The sample of 70 Orphans in the age group of 12 to 18 years were taken from the orphanages of Patna district-Apnaghar, Rainbow homes, etc. Purposive sampling was used in the study, There has been one research tool used in the study, which is Happiness scale by Dr.R.L Bhardwaj and Dr.Poonam R Das. Results- Results have revealed that Orphans have possessed a very low level of happiness and unhappiness was related due to their living conditions in the orphanage.Conclusion-It can be stated that the Level of happiness is an important missing determinant in the lives of orphans.

Keywords: happiness, orphans, patna, orphanage

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Authors: Manee Hasap, Mongkolchai Hasap, Tasanee Nasae

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The purpose of this study was to evaluate the primary caregivers’ knowledge and capabilities for providing quality care to be hospitalized post-hip fracture surgery elderly patients. The theoretical framework of the study was derived from the concepts of dependent care agency in Orem’s Self-Care theory, and family care provision for the elderly and chronically ill patients. 59 subjects were purposively selected. The subjects were primary caregivers of post-operated hip fracture elderly patients who had been admitted to the Orthopaedic Ward of Songklanagarind Hospital. Demographic data of the caregivers and patients were collected by non-participant observation using the evaluation and recording forms. The reliability of caregivers’ knowledge measurement (0.86) was obtained by KR-20 and that of caregivers’ capabilities for post-operative care evaluation form (0.97) obtained from 2 observers by interrater reliability. The data were analyzed using descriptive statistic, which were frequency, percentage, mean, and standard deviation. The result of this study indicated that elderly patients with post-hip fracture surgery had many pre-discharge self care limitations. Approximately, 75% of the caregivers had knowledge to respond to patient’s essential needs at a high level, while the rest (25%) had this knowledge a moderate level. For observation, 57.63% of the subjects had capabilities in care practice at a moderate level; 28.81% had capabilities in care practice at a high level, while 13.56% had at a low level. The result of this study can be used as basic information for patients and caregivers capabilities developing plan especially, providing patients’ activities, accident surveillance and complications prevention for a good life quality of elderly patients after hip surgery both hospitalization and rehabilitation at home.

Keywords: care givers’ knowledge, care givers’ capabilities, elderly hip fracture patients, patients

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

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

Keywords: anxiety, autism, caregiver, depression

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Authors: Ramesh Chand Chauhan, Sanjay Kumar Rai, Shashi kant, Rakesh Lodha, Nand Kumar

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Background: With a better understanding of HIV pathogenesis and availability of antiretroviral therapy more children are growing and entering in teenage group; informing children of their own HIV status has become an important aspect of long-term disease management. There is little evidence of how and when this type of disclosure takes place in a resource-limited setting. Methods: A cross-sectional study was conducted from June 2010 to May 2011 among a dyads of 156 HIV-infected children and their caregivers, those were visiting pediatric clinic at a tertiary care hospital in Delhi, India. The study protocol was approved by the Institute Ethics Committee. After taking written informed consent; pretested structured questionnaire was administered to caregivers during routine clinic visits. Information regarding socio-demographic characteristics, awareness of HIV infection status among children and their perception regarding disclosure was collected. Mean and frequencies were calculated and chi-square and logistic regression test were applied. Results: The mean age of children was 8.4 ±3.45 years. Among them 73.7% were male and 39.1% were orphans. Among 156 enrolled children, 74.4% (n=116) were of ≥ 6 years and were assessed for disclosure. Only 18.1% (n=21) children had been informed of their HIV status. Of those under 9 years, 6.4% knew their status, whereas 18.4% of 9-11 years and 35.5% of 12-14 years children knew they had HIV. Awareness among males (23.3%) was higher than females (3.3%). Both age and sex of child were significantly (p<0.01) associated with disclosure status. Other factors favoring disclosure were orphan-hood, non-perinatal mode of transmission (OR = 4.32; 95% CI 1.01-7.12), ART initiation (OR = 4.21; 95% CI 1.03-6.98), and caregiver educated beyond primary level (OR = 1.89; 95% CI 1.03-3.26). Repeated enquiry regarding the visit to clinic was the most common reason (66.6%) for disclosure. In 52.4% children disclosure was done with the involvement of other family members. 82.5% caregivers felt the age of > 10 years is appropriate for disclosing the HIV infection status to the child. Conclusion: Detailed guidelines on disclosure are required focusing on children of school-going age with perinatal infection who are not on ART and with caregivers of low educational status.

Keywords: HIV, children, India, disclosure

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

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

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

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Authors: Vicent Lwanga

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Background: Elderly Widows Orphans Family Support, a Community Based Organization operating in Kapchorwa with the main focus of reducing economic and social vulnerability among children affected by HIV/AIDS. The survey on reducing vulnerability targeted HIV/AIDS affected households, which included 111 adults and 185 children. The broad objective of the study was to determine how the needs of the children affected by HIV/AIDS could be appropriately met by specifically examining the situation of children affected by HIV/AIDS and establishing their needs. Methodology: The survey applied a structured questionnaire. Parents whose consent for the interview of the children had been obtained then communicated to the selected child/children. If the child consented, an arrangement for the interview was made as regards the time and place of the interview. Lessons: Adult respondents included 22.2% males and 77.8% females. Child respondents were males, 49.5%, and females 50.5%. The majority of the households are from lower economic strata. 74.1% and 63.0% of males and females, respectively, indicated that their illness had affected their income-earning activities; some of the adults have lost their jobs due to AIDS. A fair number of the children are engaged in economic activity: some of those still in school worked after school for wages and looked after their siblings. The income earned was spent mostly on household needs and school fees — one-fifth of children linked parents` inability to do more of what they desired to their ill-health. Elderly Widows Orphans Family Support secured sponsors to educate 22 girls and 16 boys in the community. Income-generating projects like piggery and skill training are given to orphans. The specific vulnerability of HIV/AIDS orphan's needs is responded to now more than ever. Community organisations interventions such as financial support to orphans introduced to moderate the impact of the disease on orphans and families.

Keywords: aids, children, needs, vulnerability

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Authors: Vasoontara Yiengprugsawan, Sam-ang Seubsman

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

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

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Authors: 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: Yeaji Seok, Myung Kyung Lee

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

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

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Authors: Tulika Bhattacharyya, Suhita Chopra Chatterjee

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

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

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Authors: Alexandra Telitsyna, Galina Semya, Elvira Garifulina

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Introduction: Starting from 2012 Russia conducts deinstitutionalization policy and now the main indicator of success is the number of children living in institutions. Active family placement process has resulted in residents of the institution now mainly consists of adolescents with behavioral and emotional problems, children with disabilities and groups of siblings. Purpose of science research: The purpose of science research is to identify factors for child’s wellbeing while temporary stay in an orphanage and the subjective assessment of children's level of well-being (psychological well-being). Methods: The data used for this project was collected by the questionnaire of 72 indicators, a tool for monitoring the behavior of children and caregivers, an additional questionnaire for children; well-being assessment questionnaire containing 10 scales for three age groups from preschool to older adolescents. In 2016-2018, the research was conducted in 1873 institution in 85 regions of Russia. In each region a team of academics, specialists from Non-profits, independent experts was created. Training was conducted for team members through a series of webinars prior to undertaking the assessment. The results: To ensure the well-being of the children, the following conditions are necessary: 1- Life of children in institution is organised according to the principles of family care (including the creation of conditions for attachment to be formed); 2- Contribution to find family-based placement for children (including reintegration into the primary family); 3- Work with parents of children, who are placed in an organization at the request of parents; 4- Children attend schools according to their needs; 5- Training of staff and volunteers; 6- Special environment and services for children with special needs and children with disabilities; 7- Cooperation with NGOs; 8 - Openness and accessibility of the organization. Conclusion: A study of the psychological well-being of children showed that the most emotionally stressful for children were questions about the presence and frequency of contact with relatives, and the level of well-being is higher in the presence of a trusted adult and respect for rights. The greatest contribution to the trouble is made by the time the child is in the orphanage, the lack of contact with parents and relatives, the uncertainty of the future.

Keywords: identifying factors, orphans, Russia, wellbeing

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Authors: Maria L. G. Lourenço, Keylla H. N. P. Pereira, Viviane Y. Hibaru, Fabiana F. Souza, João C. P. Ferreira, Simone B. Chiacchio, Luiz H. A. Machado

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Orphaned is a risk factor for mortality in newborns since it is a condition with total or partial absence of maternal care that is essential for neonatal survival, including nursing (nutrition, the transference of passive immunity and hydration), warmth, urination, and defecation stimuli, and protection. The most common causes of mortality in orphans are related to lack of assistance, handling mistakes and infections. This study aims to describe the orphans rates in neonatal puppies, the main causes, and the mortality rates. The study included 735 neonates admitted to the Sao Paulo State University (UNESP) Veterinary Hospital, Botucatu, Sao Paulo, Brazil, between January 2018 and November 2019. The orphans rate was 43.4% (319/735) of all neonates included, and the main causes for orphaned were related to maternal agalactia/hypogalactia (23.5%, 75/319); numerous litter (15.7%, 50/319), toxic milk syndrome due to maternal mastitis (14.4%, 46/319), absence of suction/weak neonate (12.2%, 39/319), maternal disease (9.4%, 30/319), cleft palate/lip (6.3%, 20/319), maternal death (5.9%, 19/319), prematurity (5.3%, 17/319), rejection/failure in maternal instinct (3.8%, 12/319) and abandonment by the owner/separation of mother and neonate (3.5%, 11/319). The main consequences of orphaned observed in the admitted neonates were hypoglycemia, hypothermia, dehydration, aspiration pneumonia, wasting syndrome, failure in the transference of passive immunity, infections and sepsis, which happened due to failure of identifying the problem early, lack of adequate assistance, negligence and handling mistakes by the owner. The total neonatal mortality rate was 8% (59/735) and the neonatal mortality rate among orphans was 18.5% (59/319). The orphaned and mortality rates were considered high, but even higher rates may be observed in locations without adequate neonatal assistance and owner orientation. The survival of these patients is related to constant monitoring of the litter, early diagnosis and assistance, and the implementation of effective handling for orphans. Understanding the correct handling for neonates and instructing the owners regarding proper handling are essential to minimize the consequences of orphaned and the mortality rates.

Keywords: orphans, neonatal care, puppies, newborn dogs

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Authors: Kumari Bandana Bhatt, Navin Bhatt

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Background: Orphans and vulnerable children (OVC) are high risk of physical, mental, sexual and emotional abuse and face social stigma and discrimination which significantly increase the risk of mental and behavioral disorders such as anxiety, depression or emotional problems even they stay in well run child care homes. The objective of this study was to estimate the prevalence of depression and determine the determinants among OVC in child care homes in Nepal. Methods: An institutional-based analytical cross-sectional study was conducted in twenty orphanages of five districts of Nepal. Six hundred two children were recruited into the study. After the informed consent form obtaining, the guardian and assent were interviewed by a semi-structured questionnaire and Beck Depression Inventory-II (BDI-II). Logistic regression was used for detecting the association between variables at the significant level of =0.05. Results: The study revealed that 33.20% of OVC had depression. Among them 66.80% of children experienced minimal depression, 17.40% had mild depression, 11.30% had moderate depression 4.50% had severe depression. Sex, alcohol drinking, congenital problem, social support and bully were the main variables associated with depression among OVC of the child care homes in Nepal. Conclusion: Prevalence of depression was high among the orphans and vulnerable children living in child care homes especially among the female children in Nepal. Therefore, early identification and instituting of preventive measures of depression are essential to reduce this problem in this special group of children living in child care homes.

Keywords: Mental health, Depression, Orphans and vulnerable children, child care homes

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Authors: Shyamani Hettiarachchi, Gopi Kitnasamy

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Background: The potentially high level of physical need and dependency experienced by children with cerebral palsy could affect the quality of life (QOL) of the child, the caregiver and his/her family. Poor QOL in children with cerebral palsy is associated with the parent-child relationship, limited opportunities for social participation, limited access to healthcare services, psychological well-being and the child's physical functioning. Given that children experiencing disabilities have little access to remedial support with an inequitable service across districts in Sri Lanka, and given the impact of culture and societal stigma, there may be differing viewpoints across respondents. Objectives: The aim of this study was to evaluate the psychometric properties of the Tamil version of the Cerebral Palsy Quality of Life for Children (CPQOL-Child) Questionnaire. Design: An instrument development and validation study. Methods: Forward and backward translations of the CPQOL-Child were undertaken by a team comprised of a physiotherapist, speech and language therapist and two linguists for the primary caregiver form and the child self-report form. As part of a pilot phase, the Tamil version of the CPQOL was completed by 45 primary caregivers with children with cerebral palsy and 15 children with cerebral palsy (GMFCS level 3-4). In addition, the primary caregivers commented on the process of filling in the questionnaire. The psychometric properties of test-retest reliability, internal consistency and construct validity were undertaken. Results: The test-retest reliability and internal consistency were high. A significant association (p < 0.001) was found between limited motor skills and poor QOL. The Cronbach's alpha for the whole questionnaire was at 0.95.Similarities and divergences were found between the two groups of respondents. The child respondents identified limited motor skills as associated with physical well-being and autonomy. Akin to this, the primary caregivers associated the severity of motor function with limitations of physical well-being and autonomy. The trend observed was that QOL was not related to the level of impairment but connected to environmental factors by the child respondents. In addition to this, the main concern among primary caregivers about the child's future and on the child's lack of independence was not fully captured by the QOL questionnaire employed. Conclusions: Although the initial results of the CPQOL questionnaire show high test-retest reliability and internal consistency of the instrument, it does not fully reflect the socio-cultural realities and primary concerns of the caregivers. The current findings highlight the need to take child and caregiver perceptions of QOL into account in clinical practice and research. It strongly indicates the need for culture-specific measures of QOL.

Keywords: cerebral palsy, CPQOL, culture, quality of life

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

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

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

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Authors: Elzbieta Sikorska-Simmons

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

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

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Authors: Noor Ismael, Somaya Malkawi, Sherin Al Awady, Taleb Ismael

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Background/Significance: Cancer is a serious health condition that affects individuals’ quality of life during and after the course of this condition. Children who have survived cancer and their caregivers may deal with residual physical, cognitive or social disabilities. There is little research on caregivers’ health and wellbeing after cancer. To the authors’ best knowledge; there is no specific research about how caregivers cope with everyday stressors after cancer. Therefore, this study aimed to explore the coping strategies that caregivers of children who have survived cancer utilize to overcome everyday stressors. Methods: This study utilized a descriptive survey design. The sample consisted of 103 caregivers, who visited the health and wellness clinic at a national cancer center (additional demographics are presented in the results). The sample included caregivers of children who were off cancer treatments for at least two years from the beginning of data collection. The institution’s internal review board approved this study. Caregivers who agreed to participate completed the survey. The survey collected caregiver reported demographic information and the Brief COPE which measures caregivers' frequency of engaging in certain coping strategies. The Brief COPE consisted of 14 coping sub-scales, which are self-distraction, active coping, denial, substance use, use of emotional support, use of instrumental support, behavioral disengagement, venting, positive reframing, planning, humor, acceptance, religion, and self-blame. Data analyses included calculating sub-scales’ scores for the fourteen coping strategies and analysis of frequencies of demographics and coping strategies. Results: The 103 caregivers who participated in this study were 62% mothers, 80% married, 45% finished high school, 50% do not work outside the house, and 60% have low family income. Result showed that religious coping (66%) and acceptance (60%) were the most utilized coping strategies, followed by positive reframing (45%), active coping (44%) and planning (43%). The least utilized coping strategies in our sample were humor (5%), behavioral disengagement (8%), and substance-use (10%). Conclusions: Caregivers of children who have survived cancer mostly utilize religious coping and acceptance in dealing with everyday stressors. Because these coping strategies do not directly solve stressors like active coping and planning coping strategies, it is important to support caregivers in choosing and implementing effective coping strategies. Knowing from our results that some caregivers may utilize substance use as a coping strategy, which has negative health effects on caregivers and their children, there must be direct interventions that target these caregivers and their families.

Keywords: caregivers, cancer, stress, coping

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Authors: Hanneke J. A. Smaling, Mandy Visser

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One way to reduce the risk of COVID-19 infection is by preventing close interpersonal contact with distancing measures. These social distancing measures presented challenges to the health and wellbeing of people with dementia and their informal and professional caregivers. This study describes the concerns and recommendations of informal and professional caregivers for COVID-19 policy for home care and long-term care for people with dementia during the first and second COVID-19 wave in the Netherlands. In this qualitative interview study, 20 informal caregivers and 20 professional caregivers from home care services and long-term care participated. Interviews were analyzed using an inductive thematic analysis approach. Both informal and professional caregivers worried about getting infected or infecting others with COVID-19, the consequences of the distancing measures, and quality of care. There was a general agreement that policy in the second wave was better informed compared to the first wave. At an organizational level, the policy was remarkably flexible. Recommendations were given for dementia care (need to offer meaningful activities, improve the organization of care, more support for informal caregivers), policy (national vs. locally organization, social isolation measures, visitor policy), and communication. Our study contributes to the foundation of future care decisions by (inter)national policymakers, politicians, and healthcare organizations during the course of the COVID-19 pandemic, underlining the need for balance between safety and autonomy for people with dementia.

Keywords: covid-19, dementia, home care, long-term care, policy

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Authors: Srivatsav Sanjay Sridhar, Asvitha Raja, Prathit Kalra, Soni Gupta

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Database management is a system that keeps track of details about a person in an organisation. Not a lot of orphanages these days are shifting to a computer and program-based system, but unfortunately, most have only pen and paper-based records, which not only consumes space but it is also not eco-friendly. It comes as a hassle when one has to view a record of a person as they have to search through multiple records, and it will consume time. This program will organise all the data and can pull out any information about anyone whose data is entered. This is also a safe way of storage as physical data gets degraded over time or, worse, destroyed due to natural disasters. In this developing world, it is only smart enough to shift all data to an electronic-based storage system. The program comes with all features, including creating, inserting, searching, and deleting the data, as well as printing them.

Keywords: database, orphans, programming, C⁺⁺

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Authors: Chaliya Wamaloon, Malee Chaisaena, Nusara Prasertsri

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Informal caregivers providing home-based palliative and end-of-life (EOL) care to people with advanced cancer is needed, however, there has not been develop caregiver skills for the EOL in cancer patients. The aim of this research was to study the model development of caregiver skills for the EOL in cancer patients. Mixed methods research was conducted in 3 phases. All subjects were in Ubon Rathchathani Cancer Hospital including 30 EOL cancer patient caregivers, 30 EOL cancer patients, and 111 health care professionals who provided care for the EOL cancer patients and 30 EOL target participants who had been trained to be cancer patient caregivers. The research tools were questionnaires, semi structured interviews, and caregiver skills questionnaires. Data were analyzed by using percentage, mean, standard deviation, pair t-test, and content analysis. The result from this study showed the model development of caregiver skills for cancer patients consisted of 9 domains skills: 1. monitoring, 2. interpreting, 3. making decisions, 4. taking action, 5. making adjustments, 6. providing hands-on care, 7. accessing resources, 8. working together with the ill patients, and 9. navigating the healthcare system. The model composed of skills development curriculum for cancer patient caregivers, Manual of palliative care for caregivers, diary of health care records for cancer patients, and the evaluation model of development of caregiver skills for EOL cancer patients. The results of the evaluation in the development model of caregiver skills for EOL cancer patients showed that the caregivers were satisfied with the model of development for caregiver skills at a high level. The comparison of the caregiver skills before and after obtaining the development of caregivers skills revealed that it improved at a statistically significant level (p < 0.05).

Keywords: caregiver, caregiver skills, cancer patients, end of life

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Authors: Szu Mei Hsiao

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

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

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Authors: 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: Rosy Chaudhary, Pushpa Parajuli

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

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

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Authors: Noor Ismael, Lisa Mische Lawson, Lauren Little, Murad Moqbel

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Background/Significance: Caregivers of children with Autism Spectrum Disorders (ASD) develop coping mechanisms to overcome daily challenges to successfully parent their child. There is variability in coping strategies used among caregivers of children with ASD. Capturing homogeneity among such variable groups may help elucidate targeted intervention approaches for caregivers of children with ASD. Study Purpose: This study aimed to identify groups of caregivers of children with ASD based on coping mechanisms, and to examine whether there are differences among these groups in terms of strain level. Methods: This study utilized a secondary data analysis, and included survey responses of 273 caregivers of children with ASD. Measures consisted of the COPE Inventory and the Caregiver Strain Questionnaire. Data analyses consisted of cluster analysis to group caregiver coping strategies, and analysis of variance to compare the caregiver coping groups on strain level. Results: Cluster analysis results showed four distinct groups with different combinations of coping strategies: Social-Supported/Planning (group one), Spontaneous/Reactive (group two), Self-Supporting/Reappraisal (group three), and Religious/Expressive (group four). Caregivers in group one (Social-Supported/Planning) demonstrated significantly higher levels than the remaining three groups in the use of the following coping strategies: planning, use of instrumental social support, and use of emotional social support, relative to the other three groups. Caregivers in group two (Spontaneous/Reactive) used less restraint relative to the other three groups, and less suppression of competing activities relative to the other three groups as coping strategies. Also, group two showed significantly lower levels of religious coping as compared to the other three groups. In contrast to group one, caregivers in group three (Self-Supporting/Reappraisal) demonstrated significantly lower levels of the use of instrumental social support and the use of emotional social support relative to the other three groups. Additionally, caregivers in group three showed more acceptance, positive reinterpretation and growth coping strategies. Caregivers in group four (Religious/Expressive) demonstrated significantly higher levels of religious coping relative to the other three groups and utilized more venting of emotions strategies. Analysis of Variance results showed no significant differences between the four groups on the strain scores. Conclusions: There are four distinct groups with different combinations of coping strategies: Social-Supported/Planning, Spontaneous/Reactive, Self-Supporting/Reappraisal, and Religious/Expressive. Each caregiver group engaged in a combination of coping strategies to overcome the strain of caregiving.

Keywords: autism, caregivers, cluster analysis, coping strategies

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Authors: Pellecchia M. T., Savarese G., Carpinelli L., Calabrese M.

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Introduction: Parkinson's disease (PD) is characterized by a progressive loss of autonomy which undoubtedly has a significant impact on the quality of life of caregivers, and parents are the main informal caregivers. Caring for a person with PD is associated with an increased risk of psychiatric morbidity and persistent anxiety-depressive distress. The aim of the study is to investigate the burden on caregivers of patients with PD, through the use of multidimensional scales and to identify their personological and environmental determinants. Methods: The study has been approved by the Ethic Committee of the University of Salerno and informed consent for participation to the study was obtained from patients and their caregivers. The study was conducted at the Neurology Department of the A.O.U. "San Giovanni di Dio and Ruggi D’Aragona" of Salerno between September 2020 and May 2021. Materials: The questionnaires used were: a) Caregiver Burden Inventory - CBI a questionnaire of 24 items that allow identifying five sub-categories of burden (objective, psychological, physical, social, emotional); b) Depression Anxiety Stress Scales Short Version - DASS-21 questionnaire consisting of 21 items and valid in examining three distinct but interrelated areas (depression, anxiety and stress); c) Family Strain Questionnaire Short Form - FSQ-SF is a questionnaire of 30 items grouped in areas of increasing psychological risk (OK, R, SR, U); d) Zarit Caregiver Burden Inventory - ZBI, consisting of 22 items based on the analysis of two main factors: personal stress and pressure related to his role; e) Life Satisfaction, a single item that aims to evaluate the degree of life satisfaction in a global way using a 0-100 Likert scale. Findings: N ° 29 caregivers (M age = 55.14, SD = 9.859; 69% F) participated in the study. 20.6% of the sample had severe and severe burden (CBI score = M = 26.31; SD = 22.43) and 13.8% of participants had moderate to severe burden (ZBI). The FSQ-SF highlighted a minority of caregivers who need psychological support, in some cases urgent (Area SR and Area U). The DASS-21 results show a prevalence of stress-related symptoms (M = 10.90, SD = 10.712) compared to anxiety (M = 7.52, SD = 10.752) and depression (M = 8, SD = 10.876). There are significant correlations between some specific variables and mean test scores: retired caregivers report higher ZBI scores (p = 0.423) and lower Life Satisfaction levels (p = -0.460) than working caregivers; years of schooling show a negative linear correlation with the ZBI score (p = -0.491). The T-Test indicates that caregivers of patients with cognitive impairment are at greater risk than those of patients without cognitive impairment. Conclusions: It knows the factors that affect the burden the most would allow for early recognition of risky situations and caregivers who would need adequate support.

Keywords: anxious-depressive axis, caregivers’ burden, Parkinson’ disease, psychological risks

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