Caregiver burden in chronic illness

BACKGROUND: Previous research has examined the dyadic health components consisting of dyadic burdens, psychological disorders, psychological resilience, and illness- or caregiving-related beliefs independently from each other in patients with chronic heart failure (CHF) and their caregivers, but there is a need for further insights into their interconnections. OBJECTIVE: We aimed to explore the interconnections among dyadic health components in patients with CHF and their caregivers...

Background Chronic childhood diseases are a burden for paediatric patients and their caregivers. Limited data are available on the effect of paediatric psoriasis on the caregiver's well-being and quality of life. Objective To assess the impact of childhood and adolescent chronic plaque psoriasis on parents/caregivers quality of life. Methods A single-centre cross-sectional study was performed which included 102 children with psoriasis and their caregivers. Clinico-demographic data of children and socio-demographic details of primary caregivers were collected...

BACKGROUND: Multiple sclerosis (MS) often presents a long and uncertain evolution. Treatment decisions in advanced MS are supported by robust evidence, but recent guidelines have suggested a shift to a palliative approach as the disease progresses. This study aims to describe what is known about the integration of palliative care (PC) in patients with severe MS (cost-effectiveness, moment of reference, and perspective of stakeholders). METHODS: A scoping review was developed, and the Scopus, Medline (PubMed), ISI Web of Knowledge, and SAGE databases were consulted, using the key terms: "multiple sclerosis" AND "palliative care"...

Objective: This study assessed the burden of Wilson Disease (WD) among patients and care partners (WD-CPs) in the US and compared it to a US general population of adults (GPs) and care partners (GP-CPs). Methods: This cross-sectional, self-reported survey included patients with WD and WD-CPs aged ≥18 years recruited through the Wilson Disease Association (WDA), while data for GPs and GP-CPs were obtained from the 2022 National Health and Wellness Survey. GPs and GP-CPs were propensity score matched (3:1) with WD patients and WD-CPs for demographics and health characteristics...

Cancer is a debilitating disease for which patients often need caretakers to help them live their lives and complete basic activities. This study aims to characterize the burden of the caretaker. A 14-question survey was sent out to randomly selected United States cancer caretakers to analyze the social, emotional, and physical burden of their caretaking. The results show that a majority of caretakers are direct family to the patient (69.5%). The patients' cancers are often in early stages with about 54.5% having stage 1 cancer and 22...

The purpose of the study was to assess the psychometric properties of the parent-report version of the Sibling Perception Questionnaire (SPQ) in well-siblings. Participants were 200 caregivers of healthy children ages 9-17 years who had a sibling (ages 0-18 years) diagnosed with cancer, diabetes, cystic fibrosis, epilepsy, spina bifida, or congenital heart disease. The SPQ had acceptable internal consistency reliability for the total score (α = 0.83) and displayed acceptable convergent validity as evidenced by medium to large positive correlations with the Strengths and Difficulties Questionnaire and Pediatric Quality of Life Inventory 4...

BACKGROUND AND PURPOSE: The incidence of end-stage renal disease (ESRD) in Sudan is increasing, affecting the economic status of patients, caregivers and society. This study aimed to measure ESRD's costs, including direct and indirect expenditures, and to investigate any associated factors and financial consequences. MATERIALS AND METHODS: This cross-sectional study used a standardized questionnaire to collect data from 150 ESRD patients who had been receiving dialysis for at least one year before the time of data collection at 13 specialized renal centres in Khartoum state...

OBJECTIVES: In Egypt, palliative care for geriatric patients is understudied, necessitating exploration for service optimization. Amidst rising chronic illnesses and aging, understanding perspectives of geriatric patients and families is crucial for targeted improvements. This study aims to explore geriatric patients' and their families' perspectives on palliative care in Egypt, seeking opportunities to optimize service delivery for the elderly. METHODS: Employing a cross-sectional design with 110 geriatric patients and an equal number of family caregivers from the Damietta Oncology Institute and the pain treatment clinics for cancer patients at Zagazig University Hospital, the study focuses on a specialized pain clinic...

OBJECTIVE: To systematically review the literature and summarize the health related of quality of life (HRQoL) of patients undergoing treatment for mucopolysaccharidoses (MPS), a rare, hereditary lysosomal storage disorder. METHODS: A systematic review was performed in accordance with PRISMA guidelines to identify research studies that describe the humanistic burden of MPS. A comprehensive literature search was conducted in EMBASE, MEDLINE, and eligible conferences were screened to include applicable abstracts...

BACKGROUND: A previous systematic review reporting the contributions of informal, unpaid caregivers to patient heart failure (HF) self-care requires updating to better inform research, practice, and policy. OBJECTIVE: The aim of this study was to provide an updated review answering the questions: (1) What specific activities do informal caregivers of adults with HF take part in related to HF self-care? (2) Have the activities that informal caregivers of adults with HF take part in related to HF self-care changed over time? (3) What are the gaps in the science? METHODS: This review followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines...

BACKGROUND: Improved public health strategies and medical advancements have expanded older adults' survival after acute insults from chronic diseases. The resultant increase in disability and care requirements among older adults is significant. However, transitional care interventions to support the efficient transition from acute care settings to home are primitive in developing countries like India. OBJECTIVE: This qualitative survey aimed to estimate the transitional care requirements of older adults with chronic illness discharged from acute care facilities...

The global COVID-19 pandemic forced changes in everyday life of children and adolescents due to government containment measures, an altered healthcare accessibility and utilization, and public concern about SARS-CoV-2 transmission. Data on the challenges and impact on children and their families with chronic diseases are limited. The primary objectives of this study were to assess (i) concerns for SARS-CoV-2 infection, (ii) perceived effects on health-related and overall quality of life (HRQoL and QoL), and (iii) accessibility and utilization of healthcare, comparing families with chronically ill children to families with healthy children during the second SARS-CoV-2 infection wave in Germany...

OBJECTIVES: Advancements in medicine and science have enabled more and more people to live longer with a chronic medical condition, namely cancer. Nevertheless, the palliative care (PC) approach continues to be introduced and incorporated later in the lives of patients and families dealing with such conditions. Thus, the need for individuals to care for this population in our society is increasing, giving rise to the so-called "informal caregivers." The present study intends to examine the main obstacles faced by informal caregivers taking care of a cancer patient receiving PC based on what health professionals working in these settings perceive and write down...

BACKGROUND: Cost-of-illness studies in palliative care are of growing interest in health economics. There is no standard methodology to capture direct and non-direct healthcare and non-healthcare expenses incurred by health services, patients and their caregivers in the course of the ambulatory palliative care process. OBJECTIVE: We aimed to describe the type of healthcare and non-healthcare expenses incurred by patients with cancer and non-cancer patients and their caregivers for palliative care in ambulatory-based settings and the methodology used to capture the data...

Chronic Kidney Disease (CKD) can be identified as one of the non-communicable diseases (NCDs) which affect millions of people worldwide, including in Sri Lanka and Poland. The prevalence of CKD has been rising over the last three decades due to the identification of CKD with unknown etiology and the increment of NCDs such as hypertension and diabetes mellitus among the Sri Lankan population. Poland can be identified as a European country that has 4 million patients with CKD, which is the second most common chronic disease in the country...

OBJETIVE: Parental stress is defined as a subjective perception that parenting demands are higher than their resources and is reportedly higher in parents who have children with both chronic and acute illnesses. Ear-nose-throat (ENT) disorders, such as recurrent infections and obstruction sleep disorders, are one of the most prevalent comorbidities in pediatric age. Worldwide, tonsillectomy stands as the surgical treatment for these conditions, associated with a significant burden on both the children and their parents...

BACKGROUND: A good number of psychiatric patients continue to stay in psychiatric hospitals for longer period of time despite their recovery. Inevitably, they tend to experience limitations to their freedom, personal choice and social isolation, and loss of self. It is important to assess the characteristics of these patients and the challenges in social integration. MATERIALS AND METHODS: A cross-sectional study was conducted at a mental health hospital from May 2018 to January 2023...

AIM: This study aims to synthesise quantitative and qualitative evidence to comprehensively examine the burden of family caregivers of chronic obstructive pulmonary disease patients and to understand their coping strategies and related resilience factors. BACKGROUND: Long-term chronic obstructive pulmonary disease care causes heavy psychological and physical burden to caregivers, which is related to the coping strategies used. Resilience is a protective factor originating within the individual and has become a concept related to illness, health and care...

BACKGROUND: Increased recognition of post-intensive care syndrome has led to widespread development of intensive care follow-up services internationally. OBJECTIVE: The objective of this study was to determine the feasibility and acceptability of an intensive care unit (ICU) follow-up clinic in Australia for patients and their caregivers and to describe satisfaction with this service. METHODS: This was a prospective cohort study in a mixed tertiary ICU in Australia...

The need for palliative care is increasing due to the rising burden of non-communicable diseases and some communicable diseases. Chronic illnesses demand patient-centred care that focuses on the patient's individual healthcare needs. Palliative care improves the patients' and caregivers' quality of life by providing pain and symptom relief through a holistic approach after the disease is diagnosed. Though there are various models followed in different countries, home-based palliative care is preferred by patients who wish to stay close to their loved ones at their end of life...