Life Of Primary Caregivers Research Articles

Predictors of quality of life in primary caregivers of patients with heart failure: A model of health literacy and caregiving burden

Heart Failure (HF) is a chronic disease that impairs patients' ability to care for themselves. The accumulation of caregiving activities by caregivers to patients creates stress. This study intends to investigate the mediating role of caregiving burden in the relationship between health literacy and quality of life of caregivers. This study is a cross-sectional research conducted through a questionnaire survey. A convenience sampling method was employed to select 410 primary caregivers for the study. The overall mean score for quality of life for caregivers of patients with HF was (49.30±9.64). The results showed that the caregiving burden mediated the relationship between health literacy and quality of life, with the mediating effect accounting for 39.04 % (P < 0.05) of the total effect. Caregiving burden is a mediating variable in the relationship between health literacy and quality of life. Therefore, we offer some recommendations for healthcare professionals: ①We suggest that healthcare professionals provide relevant education and training to caregivers, as this can enhance their knowledge and skills in effectively managing the health condition of patients;②Healthcare professionals can also proactively assess the caregiver's burden level and design personalized support plans based on the assessment results.

Coping strategies and quality of life in primary caregivers of cancer patients

The primary caregivers of a cancer patient are essential in the recovery and fight against cancer, which is why there is a high risk that they present deterioration in their physical and mental health due to the innumerable amount of activities focused clearly on the patient that as a consequence put aside self-care to drastically change your daily activities. Objective: To determine coping strategies and quality of life in primary caregivers of cancer patients. Methodology: Corresponds to the quantitative, descriptive, correlational cross-sectional approach to establish the dimension of quality of life in primary caregivers of cancer patients through a descriptive survey of the quality of life test that addresses the physical, emotional, cognitive and social dimensions that influence the daily performance of the primary caregiver. Results: From the application of the Quality of Life Test, it was obtained in the sociodemographic characteristics that women with 58% in an age range of 28 to 37 years are mostly the primary caregivers of cancer patients, in terms of health status. In general, 70% of the caregivers consider themselves to be in good physical and mental condition, however, with the passage of time, considerable deterioration was observed in the caregivers of patients with a longer fight against cancer. Conclusions: Informal caregivers also require medical attention and psychological evaluation because they are the ones who face all the requirements of a cancer patient.

Impact on glucometric variables and quality of life of the advanced hybrid closed-loop system in pediatric and adolescent type 1 diabetes.

In recent years, technological advances in the field of diabetes have revolutionized the management, prognosis, and quality of life of diabetes patients and their environment. The aim of our study was to evaluate the impact of implementing the MiniMed 780G closed-loop system in a pediatric and adolescent population previously treated with a continuous subcutaneous insulin infusion pump and intermittent glucose monitoring. Data were collected from 28 patients with type 1 diabetes aged 6 to 17 years, with a follow-up of 6 months. We included both glucometric and quality of life variables, as well as quality of life in primary caregivers. Metabolic control variables were assessed at baseline (before system change) and at different cutoff points after initiation of the closed-loop system (48 hours, 7 days, 14 days, 21 days, 1 month, 3 months, 6 months). Time in range 70-180 mg/dL increased from 59.44% at baseline to 74.29% in the first 48 hours after automation of the new system, and this improvement was maintained at the other cutoff points, as was time in hyperglycemia 180-250 mg/dL (24.44% at baseline to 18.96% at 48 hours) and >250 mg/dL (11.71% at baseline to 3.82% at 48 hours). Our study showed an improvement in time in range and in all time spent in hyperglycemia from the first 48 hours after the automation of the system, which was maintained at 6 months.

Leisure, Employment, Community Participation, and Quality of Life in Primary Caregivers of Autistic Children: A Qualitative Study

PurposeIn prioritising the needs of their autistic children, parents often modify their own participation across leisure, social, and workforce activities. Few studies have examined the impact these modifications have on caregiver quality of life (QoL). The aim in the current study was to examine how parenting their autistic child/ren impacts parent’s participation and QoL.MethodsTwenty primary caregivers (29–48 years, all female) of autistic children (7–11 years) were interviewed online about their participation in leisure, community, and employment activities including the impact of COVID-19.ResultsFive themes with underlying subthemes were identified using reflexive thematic analysis. The themes were: (1) Reflecting on the important things in life, (2) Getting access to everything needed, (3) Barriers to participation in meaningful activities, (4) Facilitators of participation in meaningful activities, and (5) Participation through the COVID-19 pandemic.ConclusionThe findings highlight the importance of regular participation in meaningful activities for parents of autistic children and the support needed by them, particularly single parents, to achieve balance between meeting caring responsibilities and their own participation needs.

Correlates of health-related quality of life in primary caregivers of perinatally HIV infected and HIV exposed uninfected adolescents at the Kenyan Coast

BackgroundMothers and other primary caregivers play a crucial role in looking after perinatally HIV infected, and HIV exposed uninfected adolescents in sub-Saharan Africa. Day- to-day caregiving in the context of limited instrumental support and added biomedical risk (HIV seropositivity) may expose these caregivers to adverse states of health. Unfortunately, very few studies have examined their health-related quality of life (HRQoL). Our study documents the HRQoL profile, and associated factors in primary caregivers of perinatally HIV infected, perinatally HIV exposed but uninfected and HIV unexposed/uninfected adolescents aged 12–17 years at the Kenyan Coast.MethodsThis was a cross-sectional analysis of 485 primary caregivers: 195 of perinatally HIV infected adolescents, 128 of perinatally HIV exposed but uninfected adolescents and 162 of HIV unexposed/uninfected adolescents. All caregivers completed a self-report measure of HRQoL (having 8 subscales), depressive symptoms, and parenting stress. They also provided their sociodemographic information and that of the care recipients. We used one-way analysis of variance to assess statistical differences among the groups. Linear regression analyses were used to identify correlates of HRQoL.ResultsOverall, caregivers of HIV unexposed/uninfected adolescents reported significantly higher mean HRQoL scores than the other caregivers in the overall HRQoL domain and majority of the subscales. There were no statistical differences in the overall HRQoL scores and most subscales between caregivers of HIV exposed adolescents. Linear regression analyses across the sample indicated that depressive symptoms, increasing age of caregiver, and caring for an adolescent perinatally exposed to HIV were significantly associated with reduced HRQoL at both the overall and sub-scale level. Having a professional job relative to subsistence farming was the only factor associated with improved overall HRQoL. At subscale level, higher socioeconomic status correlated positively with HRQoL while being a grandparent, level of education, parenting stress were negatively associated with HRQoL.ConclusionsCaregivers in this sample, especially those who are ageing, at risk of mental ill-health, and taking care of adolescents perinatally exposed to HIV, appear to be vulnerable to poor quality of life. Inclusive and multi-component interventions tailored to the caregivers' psychosocial and mental needs will potentially enhance their quality of life.

Health-Related Quality of Life in Primary Caregivers of People Receiving Palliative Home Care.

Primary caregivers face constant challenges because of changes in the clinical situation of the person receiving palliative home care. These changes can alter the health-related quality of life and all its dimensions. This study aimed to describe the health-related quality of life of 137 primary caregivers of people enrolled in a palliative home care program in Bogotá, Colombia, applying a quantitative, descriptive, and cross-sectional research design. The Caregiver's Quality of Life Instrument, initially developed by Ferrell, and the sociodemographic characteristics form for caregivers of people with chronic disease, both previously validated in the Colombian population, were used. The results showed that the primary caregivers have a good and adequate overall health-related quality of life; however, they presented some alterations in the physical, psychological, and social dimensions. Therefore, nursing and interdisciplinary palliative care teams should aim their interventions not only at patients but also at primary caregivers during palliative home care.

Quality of life in primary caregivers of patients with cerebrovascular disease

Quality of life in primary caregivers of patients with cerebrovascular disease

Caregiver distress and quality of life in primary caregivers of oncology patients in active treatment and follow-up.

As the number of informal caregivers and their caregiving responsibilities increase, this study aims at evaluating caregiver distress, quality of life (QoL) and their predictors in informal caregivers of cancer patients during active treatment and follow-up. This cross-sectional descriptive study targeted primary caregivers of patients with different cancer diagnoses. Caregiver-reported outcomes were measured by the Caregiver Risk Screen (CRS), Distress Thermometer (DT) and Caregiver Quality of Life Index-Cancer (CQOLC). Caregivers (n=1580) experienced a low-to-moderate risk of caregiver distress and a moderate QoL during both treatment and follow-up. About 13% reported a high caregiver risk and 20% reported severe distress. There was a strong and significant correlation between caregiver distress and caregivers' QoL (0.793). Predictive factors for higher distress and poorer QoL were: fewer emotional and practical resources, being female, non-spousal relationship or not living together (p<0.05). Caregivers of patients with head-and-neck, skin, lung and brain cancers reported the highest distress and lowest QoL. Caregiver distress is highly variable, but a minority of caregivers is at high risk for caregiver distress. Professional caregivers play an important role at supporting caregivers and detecting high-risk caregivers.

Prevalence of depression and quality of life in primary caregiver of children with cerebral palsy.

Objective:Study the correlation of depression and quality of life (QoL) in primary caregivers (mothers) of children with cerebral palsy (CP).Methods:An observational cross-sectional study was conducted on a total of 203 primary caregivers (mothers) of children with CP. The depression and QoL in the caregivers were assessed using the Montgomery and Asberg Depression Rating Scale and World Health Organization Quality of Life Instrument (WHOQOL-BREF) (physical, psychological, social and environmental domains), respectively. The child’s gross motor function level was determined using the Gross Motor Functional Classification System-Expanded and Revised (GMFCS-ER). The association of depression and QoL in mothers to functional limitation in children were assessed. For statistical methods, P < 0.05 was considered significant.Results:The severity of the depression showed a statistically significant negative correlation with the physical domain (r = −0.498, P < 0.0001), psychological domains (r = −0.486, P < 0.0001), social relationships (r = −0.165, P = 0.019) and environmental domains (r = −0.195, P = 0.005). The mean QoL domains scores showed a decreasing trend with increasing motor dysfunction of the child, with a statistical association for physical (r = −0.327, P < 0.0001) and psychological domains (r = −0.440, P < 0.0001). Out of all the baseline demographic factors, the child’s age was a significant risk factor affecting the mother’s QoL (P = 0.041).Conclusion:CP, being a debilitating disease, requires around-the-clock caregiving for the child. However, caregiving causes a significant impact on the QoL with increasing severity of depression among the mothers.

Assessing subjective burden and quality of life in family caregivers of older adults

OBJECTIVE: To evaluate subjective burden and perceived quality of life in primary caregivers who care for older adults at home. Caregivers were followed up in a pilot support group. The study also sought to describe the experience of encouraging dialogue and interaction within this group. METHODS: This quanti-qualitative study was limited to nine family caregivers. Data were collected using the following instruments: the World Health Organization Quality of Life abbreviated version, the Zarit caregiver burden interview, the family APGAR questionnaire, the Hospital Anxiety and Depression Scale, the Katz index of independence in activities of daily living, and the Neuropsychiatric Inventory. Dialogue and interaction in the support group meetings was encouraged through guiding questions. RESULTS: The family caregivers, mostly women with low education, were responsible for older patients who were functionally dependent and had a low frequency and intensity of neuropsychiatric symptoms. The caregivers actively participated in the pilot group. They reported a mild subjective burden and did not present depressive symptoms. They had borderline anxiety symptoms and scores above 60 for all quality of life domains, in addition to good family functionality. CONCLUSIONS: The participants in this pilot group had a mild subjective burden, good perceived quality of life, and showed interest in a caregiver support group. Such groups could be a complementary and instrumentalizing practice in home care and could contribute to a lower caregiver burden and caregiver anxiety, improving their perceived quality of life related to the psychological and social relationship domains.

Quality of life in primary caregivers of patients in peritoneal dialysis and hemodialysis.

Background:Peritoneal dialysis (PD) is gaining track as an efficient/affordable therapy in poor settings. Yet, there is little data regarding differences in quality of life (QoL) of primary caregivers (PCG) of patients in PD and hemodialysis (HD).Aim:To compare the QoL of PCG of patients in PD and HD from an upper middle-income population in a Mexican city.Methods:Cross-sectional study was carried out with PCG of patients in PD (n=42) and HD (n=95) from 4 hospitals (response rate=70.2%). The SF 36-item QoL questionnaire, the Zarit burden interview, and the Goldberg anxiety/depression scale were used. Mean normalized scores for each QoL domain were compared by dialysis type. Adjusted odds were computed using logistic regression to determine the probability of low QoL (<70% of maximum possible score resulting from the added scores of the 8 dimensions).Results:The PD group had higher mean scores for emotional role functioning (+10.6; p=0.04), physical functioning (+9.2; p=0.002), bodily pain (+9.2; p=0.07), social functioning (+5.7; p=0.25), and mental health (+1.3; p=0.71); the HD group had higher scores for physical role functioning (+7.9, p=0.14), general health perception (+6.1; p=0.05), and vitality (+3.3; p=0.36). A non-significant OR was seen in multivariate regression (1.51; 95% CI 0.43-5.31). Zarit scores were similar, but workload levels were lower in the PD group (medium/high: PD 7.2%, HD 14.8%). Anxiety (HD 50.5%, PD 19%; p<0.01) and depression (HD 49.5%, PD 16.7%; p<0.01) were also lower in the PD group.Conclusion:Adjusted analysis showed no differences in the probability of low QoL between the groups. These findings add to the value of PD, and strengthen its importance in resource-limited settings.

Costs, burden and quality of life associated with informal caregiving for children with Lymphoma attending a tertiary hospital in Ghana

IntroductionPrimary family caregivers provide substantial support in the management of lymphoma, potentially affecting their quality of life and increasing household health care costs. Our aim was thus to determine the economic costs and quality of life of primary caregivers of children with lymphoma.MethodsThis cross-sectional study involved primary informal caregivers of children with lymphoma attending the pediatric cancer unit at Komfo Anokye Teaching Hospital. The study adopted a cost-of-illness approach to estimate the direct costs (medical and non- medical) incurred and indirect cost (productive losses) to caregivers over the one-month period preceding the data collection. Zarit Burden Interview was used to determine caregiver burden and EUROHIS-QoL tool was used to determine the quality of life of primary caregivers.ResultsThe average cost of managing lymphoma in children was estimated to be US$440.32, 97% of which were direct costs. On average, caregiver burden was 26.3 on the scale of 0 to 48. About 94% of caregivers reported high burden, with more males reporting high burden. Overall, average quality of life among caregivers was 2.20 on the 1 to 5 range. Approximately 85% of respondents reported low quality of life, with females reporting lower quality of life than males.DiscussionThis study shows that lymphoma is associated with substantial cost and increased burden, and affects quality of life of family caregivers. Future studies can explore the impact of social protection interventions (in the form of health insurance) to reduce the household economic burden of managing lymphoma in children.

ADAPTACIÓN, AFRONTAMIENTO Y CALIDAD DE VIDA EN MODOS ADAPTATIVOS DE CUIDADORES PRIMARIOS

Objetivo: analizar la relación del proceso de afrontamiento y adaptación con la calidad de vida y satisfacción de cuidadores primarios, mediante la aplicación e integración de las teorías de Orem y Roy. Metodología: se realizó un estudio mixto de tipo triangulación concomitante, en el Policlínico “Chiqui Gómez Lubián” del municipio de Santa Clara en Cuba; desde el año 2016 al 2019. La población de estudio fue 21 cuidadores primarios de infantes con déficit de atención e hiperactividad. Los datos se recogieron con dos escalas autoadministrables y una entrevista en profundidad. Las escalas se procesaron con el programa estadístico para las ciencias sociales SPSS versión 24.0 y la entrevista mediante análisis de contenido temático. Resultados: se obtuvo nivel medio de capacidad de afrontamiento, adaptación y calidad de vida y satisfacción de cuidadores primarios, en relación a los modos adaptativos, además de obtener una propuesta de definición de calidad de vida en cuidadores primarios, basada en su relación con el proceso de afrontamiento y adaptación. Conclusiones: los referentes teóricos fueron el sustento ideal para el análisis, dado que el mismo se basó en la integración del modelo de adaptación de Roy y el sistema de apoyo educativo de la Teoría de Autocuidado de Orem, lo que facilitó la comprensión de la relación entre las dimensiones afectadas de calidad de vida y satisfacción de cuidadores primarios, como necesidades adaptativas de autocuidado y los modos adaptativos, en el proceso de afrontamiento y adaptación, durante el acto de cuidar.

Influence of cognitive behavioral intervention on the burden of care and quality of life of primary caregivers in lung cancer patients with chemotherapy

目的 分析认知行为干预用于肺癌化疗患者照顾者中对照顾者负担和生活质量的影响及临床应用价值。 方法 选取浙江大学舟山医院2017年4月至2018年4月化疗的肺癌患者主要照顾者150例，采用随机数字表法分为对照组75例、观察组75例。对照组采取健康宣教，观察组联合认知行为干预措施。比较两组照顾者照顾负担和生活质量。 结果 观察组干预后个人负担评分(24.86±1.02)分、责任负担担评(7.02±1.12)分、照顾者负担量表评分(ZBI)总分(38.98±2.03)分，对照组分别为(28.99±1.98)分、(8.87±1.86)分、(45.22±3.47)分，两组差异均有统计学意义(t＝6.198、5.329、6.103，均P<0.05)。观察组干预后焦虑自评量表评分(44.23±2.54)分、抑郁自评量表评分(47.04±3.26)分，对照组分别为(52.98±4.93)分、(58.97±4.96)分，两组差异均有统计学意义(t＝6.198、7.810，均P<0.05)。观察组身体健康、心理健康、社会适应、精神健康、生活质量评分总分分别为(42.97±3.21)分、(24.12±2.23)分、(45.76±2.76)分、(51.54±2.88)分、(171.67±9.76)分，对照组分别为(32.54±1.65)分、(12.51±1.13)分、(32.31±1.46)分、(40.24±1.25)分、(134.65±4.08)分，两组差异均有统计学意义(t＝11.329、12.818、13.027、12.387、14.028，均P<0.05)。 结论 认知行为干预应用在肺癌化疗患者主要照顾者中能够减轻负性情绪，提升照顾者生活质量，减轻照顾负担。

Development of a Pediatric Dermatology Screening Tool Based on Two Parent-Reported Skin Symptoms: Comparison of Parental Recognition and Physician Diagnosis of Skin Symptoms of Infants and Toddlers.

AimThe objective of the present study was to develop a tool for mothers to assess their children’s skin condition with the ultimate goal of its wider use in general health checkups for infants and toddlers.MethodsThis was a single-institution, cross-sectional study in Japan, targeting parents of 200 infants and toddlers who visited a dermatology clinic between December 2018 and March 2019. The parents completed a self-administered survey of the mother’s perception of her child’s dermatological symptoms, itchiness, and sleep status, and a quality-oflife assessment, using a nine-question version of the Quality of life in Primary Caregivers of children with Atopic Dermatitis questionnaire (QP9). The attending physician was asked to complete a form about the child’s dermatological condition and the treatment prescribed. The severity of the dermatological condition noted by the physician was compared with the combined response to the 3 perception items (dermatological condition, itchiness, and sleep) reported by the parents, in order to identify the optimal cutoff score.ResultsOf 200 parent questionnaires distributed, 198 (99% response rate) were returned and analyzed, along with the responses from 198 physician records (100% response rate). The optimal cutoff score was 2/3 for the total score (range 0-6) for 2 items, itchiness and sleep status (sensitivity 73%, specificity 64%). There was a significant difference in QP9 scores between the 2 groups categorized by the cutoff scoreConclusionsA pediatric dermatological screening tool based on 2 symptoms reported by the parents of children with atopic dermatitis was developed, and its precision and criterion-related validity were confirmed. This simple tool could help parents become better aware of their children’s skin condition and allow healthcare workers to provide adequate skin care advice. This practical tool could be widely applicable in primary child care and public health service settings.

Caregiver burden and quality of life in primary caregivers of schizophrenia patients: A cross-sectional study from a tertiary care hospital

Background: With a shift in treatment and care of schizophrenia over the years, with more and more patients being treated on an outpatient basis and cared in community, caregivers experience distress in psychological and emotional health, have reduced social contact, have financial difficulties, have low life satisfaction, and have poor mental and physical health. Aims: The aim is to understand the quality of life (QoL) and the extent of burden perceived by caregivers while caregiving a family member with a diagnosis of schizophrenia. Materials and Methods: This was a cross-sectional study. A total of 75 schizophrenia patients and their caregivers were included in this study. Standardized instruments were administered to patients as well as to caregivers to collect data regarding symptomatology in patients and perceived burden and QoL in their caregivers. Results: The mean age of caregivers was 40.49 ± 12.65 years, and of patients was 37.45 ± 9.55. The mean score on the Schizophrenia Caregiver Quality of Life (S-CGQoL) questionnaire was 44.8 ± 8.67. 76% of caregivers had a score

Correlation study on the quality of life in patients with maintenance peritoneal dialysis and their primary caregivers

Objective To investigate the quality of life and its related factors in maintenance peritoneal dialysis (MPD) patients and their primary caregivers; to analyze the correlation of the quality of life MPD patients and their primary caregivers. Methods A total of 92 MPD patients and their primary caregivers were chosen for the study. The patients were performed peritoneal dialysis catheterization in our hospital nephrology from June 2008 to June 2012 and had regularly peritoneal dialysis. General clinical data and questionnaire survey of all patients and primary caregivers were analyzed retrospectively. Results The total score of SF-36 was (86.75±20.76) in MPD patients. There was no significant difference in the scores of SF-36 liking gender or marital status(P>0.05), while there were significant differences in the score of SF-36 such as age, dialysis time, medicare reimbursement and work status(P<0.05). Multiple linear regression analysis showed that age was related factor for the quality of life of MPD patients. The total score of SF-36 was (121.46±18.57) in primary caregivers. There were significant differences in the score of SF-36 in primary caregivers with different gender, age, length of day care, care duration and family/social relations(P<0.05). Multiple linear regression analysis showed that gender, age and time of day care were related factors for the quality of life in primary caregivers. Correlation analysis showed that the score of SF-36, PCS and MCS in MPD patients were positively correlated with the score of SF-36 and MCS in primary caregivers respectively. Conclusions The quality of life in MPD patients is poor, and age is the main related factor. The quality of life is lower in primary caregivers than in normal people, and gender, age and time of day care are the related factors. The quality of life in MPD patients is positively correlated with the quality of life in primary caregivers. To improve the quality of life in patients, the quality of life in primary caregivers should be improved by varieties of ways. Key words: Maintenance peritoneal dialysis; Primary caregivers; Quality of life; Correlation

Correlation of Upper Extremity Function to Quality of Life of Primary Caregivers of Ambulatory Stroke Survivors Living in the Community

Objective:To investigate the correlation between function of the involved upper extremity and hand of the ambulatory stroke survivors living in the community independently and quality of life of their primary caregivers.Design:This was a case-control study comparing the Brunnstrom grading of the pat

Tu1009 Quality of Life of Primary Caregivers of Patients With Chronic Liver Disease: A Pilot Study

Tu1009 Quality of Life of Primary Caregivers of Patients With Chronic Liver Disease: A Pilot Study

770 – Psychiatric co morbidity and stress in primary caregivers of hiv patients

Introduction HIV like other chronic illnesses is an important contributing factor for psychiatric co-morbidity in not only HIV sufferers as well as their caregivers. Few studies show that a significant proportion of caregivers of HIV positive patients had psychiatric illness which is otherwise neglected but in turn hampers the quality of care provided to the HIV positive patient as well as the caregiver himself. This chunk of population if identified at a earlier stage, steps to teach them healthy coping strategies as well as timely initiation of management of psychiatric illness can decrease the burden of disease. Aims and objectives To assess and compare the presence of psychiatric morbidity, stress and quality of life in primary caregivers of HIV patients. Methodology All primary caregivers of HIV positive patient attending the Anti Retroviral Therapy(ART) center during six month period were assessed using a semi-structured Performa, International neuropsychiatric interview English version 5.0.0 (MINI PLUS) scale, PSLES, WHO QOL brief scale,. Data was segregated and analysed using appropriate statistical test. Result Out of total 125 respondents 24(19.2%) were found to be depressive. Anxiety disorders were significantly prevalent (8.4%). other psychiatric disorders were somatisation, adjustment disorder etc. PSLES was fairly high and WHO QOL scoring was low in caregivers as compared to control group. Conclusion Significantly high number of caregivers was positively screened for psychiatric morbidity, most of them were stress related neurotic disorders. The stress level was more in caregivers and quality of life was compromised as compared to control group.