Caregiver burden in chronic illness

BACKGROUND: Family carers face challenges that could significantly affect their health and the health of those they care for. However, these challenges are not well documented in low-income settings, including Uganda. We explored the challenges of caring for someone with chronic non-communicable disease (NCD) in Uganda. METHODS: We conducted a qualitative exploratory study at Hospice Africa, Uganda (an urban setting) and Hampton Health Center (a rural setting) in Uganda in February and March 2021...

BACKGROUND: Persons diagnosed with serious chronic illnesses and their caretakers experience multiple types of financial costs that strain their income and generate financial distress. Many turn to medical crowdfunding (MCF) to mitigate the harms of these costs on their health and quality of life. OBJECTIVE: This scoping review aims to summarize the research on MCF for persons diagnosed with serious chronic illness regarding study designs and methods; the responsible conduct of research practices; and study foci as they relate to stress, stress appraisals, and the coping processes...

BACKGROUND AND OBJECTIVES: Family caregivers of persons with dementia face an elevated risk of several chronic illnesses compared to their non-caregiver counterparts. While exercise is a strong preventive measure for several debilitating health conditions, longitudinal research guided by theoretical frameworks has not identified how behavioral determinants predict exercise among caregivers. This study aimed to investigate how intrapersonal exercise determinants contribute to caregivers' exercise participation while accounting for social-contextual factors, including perceived caregiving burden and pandemic-related distress, by employing an extended Health Belief Model...

BACKGROUND: Caregivers are responsible for the home care of family members with severe mental illnesses (SMIs) and their lives are often subject to changes that can create stress and burden. The purpose of this study was to explore the current state of family disease burden and its correlation with social support among family caregivers of SMIs patients. METHODS: Using a random sampling method, a total of 1,108 family caregivers of SMIs patients in community health service centers were selected...

Amyotrophic lateral sclerosis (ALS) is a rare, incurable, and ultimately fatal, devastating, progressive degenerative neurologic disease. It causes upheaval in the lives of patients and family caregivers alike. Palliative care can play an important supportive role in the care of patients and families dealing with the devastation of this illness. Clinical hypnosis has demonstrated benefits in treating the symptoms associated with severe chronic illness. There are, however, few studies looking at the benefits of clinical hypnosis in treating the symptom burden of ALS...

BACKGROUND: Inclusion body myositis (IBM) is the most frequent type of myositis in elder patients with a slow chronic progression and refractory to treatment. Previous cost of illness (COI) studies in IBM used claims data to estimate direct costs in the US. No evidence exists globally on both direct and indirect costs in IBM from a societal perspective. We conducted a survey in patients registered in the German IBM patient registry. Self-developed items were used to assess the utilized healthcare resources and estimate the cost...

According to section IV.B.1.e of common residency program requirements from the Accreditation Council for Graduate Medical Education (ACGME), "[r]esidents must learn to communicate with patients and families to partner with them to assess their care goals, including, when appropriate, end-of-care [EOL] goals". EOL conversations are frequently appropriate for patients suffering from serious, life-threatening diseases (ie, terminal illness) or otherwise chronic health conditions with poor disease trajectories...

BACKGROUND: Elder mistreatment (EM) harms individuals, families, communities, and society as a whole. Yet research on interventions is lagging, and no rigorous studies demonstrating effective prevention have been published. This pilot study examines whether a first-of-its-kind coaching intervention reduced the experience of EM among older adults with chronic health conditions, including dementia. METHODS: We used a double-blind, randomized controlled trial to test a strengths-based person-centered caregiver support intervention, developed from evidence-based approaches used in other types of family violence...

INTRODUCTION: This study aimed to assess the clinical, economic, and humanistic impact of short-bowel syndrome/chronic intestinal failure (SBS/CIF) in Portugal. METHODS: This is a retrospective multicenter cohort chart review study, with a cross-sectional component for quality-of-life (QoL) evaluation. Inclusion criteria comprised patients with SBS/CIF, aged ≥1 year, with stable parenteral nutrition (PN). Data collection included patient chart review over a 12-month period and patient/caregiver self-report and SF-36/PedsQL™ questionnaires...

OBJECTIVES: Obsessive-compulsive disorder (OCD) is a chronic and debilitating psychiatric condition, with diagnosed patients typically experiencing moderate or severe symptoms. This study evaluated the cost-of-illness (CoI) of OCD in the UK, capturing the annual costs accrued to the National Health Service (NHS) and Personal Social Services (PSS), people with OCD, caregivers and society. METHODS: The UK OCD population was estimated and stratified by age group (children, adults, elderly), symptom severity (mild, moderate, severe) and treatment received (including no treatment)...

BACKGROUND: Caregivers of people with chronic illnesses often face negative stress-related health outcomes and are unavailable for traditional face-to-face interventions due to the intensity and constraints of their caregiver role. Just-in-time adaptive interventions (JITAIs) have emerged as a design framework that is particularly suited for interventional mobile health studies that deliver in-the-moment prompts that aim to promote healthy behavioral and psychological changes while minimizing user burden and expense...

BACKGROUND: It is well known that caregivers are at risk of suffering from diseases, including chronic ones, which might increase the burden of the healthcare worker. MATERIALS AND METHODS: A cross-sectional study was conducted in Jordan on 143 caregivers who were randomly selected to participate in self-administered Quality of Life in Life-Threatening Illness-Family Carer Version (QOLLTI-F) questionnaire. The variables were tested using simple linear regression analyses in the SPSS...

Among people with cystic fibrosis (CF), illness burden is multifaceted, and symptoms may fluctuate in intensity across a lifespan. Caregivers of people with CF may also experience distressing symptoms. Recent developments in CF care, including the availability of highly effective modulator therapies (HEMTs) and new palliative care guidelines promoting palliative care screening may help alleviate symptoms. The objective of this review was to present a narrative view of the recent literature on symptom burden in CF, new screening approaches informed by the Cystic Fibrosis Foundation (CFF) palliative care guidelines, and early data from studies examining the impact of HEMTs on CF symptom burden...

BACKGROUND: Cancer caregivers directly affect patient health outcomes. To maintain the function and health of caregivers so that patients can receive efficient care, we must pay more attention to caregivers' quality of life in the process of caring for patients. However, the factors influencing caregivers' quality of life are complex. AIM: To assess caregivers' quality of life in the process of caring for cancer patients and to explore the factors associated with it...

BACKGROUND: Atopic dermatitis (AD) is a chronic skin condition that is associated with significant patient burden and decreased health-related quality of life (HRQoL). We report results of the real-world Epidemiology of Children with Atopic Dermatitis Reporting on their Experience study in Japanese pediatric patients, focusing on the impact of AD severity on disease burden. METHODS: Children and adolescents aged 6 months to 17 years (or their caregivers/parents) completed an online survey between September 26, 2018, and March 5, 2019...

Caregiver burden is a term that refers to the adverse effect of caregiving on the physical, emotional, social, spiritual, and financial well-being of the caregiver. Caregiver burden is associated with providing care to an individual with a chronic illness or disability, and the unique symptoms of Parkinson disease (PD) can amplify a patient's needs and reliance on others, leading to adverse outcomes for patients and their caregivers. In this scoping review of the literature from January 2017 through April 2022 that included 114 studies, we provide an updated, evidence-based summary of patient and caregiver-related factors that contribute to caregiver burden in PD...

PURPOSE: To explore the palliative care needs and preferences of older adults with advanced or serious chronic illnesses and their families. Also, to propose strategies to promote supportive palliative care in the rural communities of Indiana, USA. METHOD: We conducted qualitative interviews to gather rural caregivers' experiences of palliative care. Recruitment was done in collaboration with community partners using social media, flyers, emails, invitations, and word-of-mouth...

OBJECTIVE: Having a brain tumour can disrupt social roles and networks. Despite growing evidence on the significance of social support in adjustment to chronic illness, research rarely focuses on the role of relationships when coping with a brain tumour. The current study sought to explore individuals' experiences of social support, and the dynamics within their social relationships, following a diagnosis of a brain tumour. METHODS: Interpretative Phenomenological Analysis (IPA) was used as a methodological framework...

BACKGROUND: Providing informal care for a person with Parkinson's disease (PD) can be a demanding process affecting several dimensions of a caregiver's life and potentially causing caregiver burden. Despite the emerging literature on caregiver burden in people with PD, little is known about the inter-relationship between quantitative and qualitative findings. Filling this knowledge gap will provide a more holistic approach to develop and design innovations aiming at reducing or even preventing caregiver burden...

OBJECTIVES: Research reports that providing care to a relative or friend with a chronic health condition or significant neurocognitive disorders, such as dementia is a demanding job. Caregiving often leads to higher risk for adverse mental health outcomes. In this study, we examine the short-term efficacy of the CaregiverTLC online psychoeducational program to caregivers of adults with chronic health or significant memory troubles. METHOD: Using pre-post data from the CaregiverTLC randomized controlled trial ( n  = 81) we examined differences between the intervention and control conditions on caregivers' psychosocial outcomes for depressive symptoms, self-efficacy, burden, anxiety, and caregiver gains...