Caregiver Burden in Movement Disorders and Neurodegenerative Diseases: Editorial

Klietz, Martin

doi:10.3390/brainsci12091184

Cited by 3 publications

(3 citation statements)

References 27 publications

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“…In the interviews, participants shared similar physical and mental treatment and di culties, during their work, formal caregivers have to perform some unwanted tasks, such as cleaning private parts and cleaning up urine, stool, or vomit, with no freedom and little dignity, sometimes, they even have to endure criticism from clients. Just as previous literature has reported, formal caregivers experience signi cant physical and psychological strain [16,[18][19][20][21]23]. More than that, in this study we found that in order to compensate for the heavy burden, they were still striving to maintain their internal and external motivations and responsibilities to actively explore a variety of coping strategies.…”

Section: Discussionsupporting

confidence: 48%

“…Formal caregivers, who are considered "Invisible Patients" [17], suffer from a high physical and psychological burden [18,19]. The uncontrollable and disruptive behavior of the elderly with disabilities, which contributed to the formal caregivers' multifaceted burdens in stressful situations, affected their health and quality of life [16,20,21]. Gao et al [22] systematically reviewed 35 studies with a total of 3,268 caregivers and found that caregivers typically received 2.4 to 3.5 fewer hours of sleep per week than the non-caregiving controls.…”

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confidence: 99%

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Experiences of Formal Caregivers of Elderly Inpatients with Physical Disabilities in China: A Qualitative Study

SUN,

ZHENG,

CHEN

et al. 2024

Preprint

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Aim To explore the views and experiences of paid carers caring for older inpatients with physical disabilities. Methods It was a qualitative phenomenological study. Using purposive sampling, twelve formal caregivers were chosen in a tertiary comprehensive hospital in Hangzhou, China. Semi-structured, face-to-face interviews were conducted, guided by open-ended questions that focused on gaining rich insights into participants' views and experiences. Coding reliability thematic analysis was used to guide data analysis and categorize, based on Lazarus and Folkman's theory of transactional coping. Results Four themes emerged from the data analysis: (1) Caregiving Threats. (2) motivations. (3) Responsibility Management. (4) Fear. Conclusion The job of paid carers can be demanding, identifying their sources of motivation and coping strategies can assist in providing prompt support, ultimately enhancing their resilience to stress and maintaining the stability of care services for elderly individuals with disabilities.

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Section: Discussionsupporting

confidence: 48%

mentioning

confidence: 99%

Experiences of Formal Caregivers of Elderly Inpatients with Physical Disabilities in China: A Qualitative Study

SUN,

ZHENG,

CHEN

et al. 2024

Preprint

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“… 14 Studies in neurodegenerative diseases, such as amyotrophic lateral sclerosis, Parkinson, Huntington’s disease or dementia, report an increasing disease severity and an autonomy loss of the patients as relevant factors for an increasing caregiver burden. 15 Although essential findings from these studies may be transferred to the informal care situation of people with FA, evidence concerning the economic burden of FA is still inconclusive, especially from a societal perspective that includes individuals’ and caregivers’ productivity losses next to the utilisation of healthcare services.…”

Section: Background and Rationalementioning

confidence: 99%

Patient-reported, health economic and psychosocial outcomes in patients with Friedreich ataxia (PROFA): protocol of an observational study using momentary data assessments via mobile health app

Buchholz,

Weber,

Borel

et al. 2023

BMJ Open

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IntroductionFriedreich ataxia (FA) is the most common hereditary ataxia in Europe, characterised by progressively worsening movement and speech impairments with a typical onset before the age of 25 years. The symptoms affect the patients’ health-related quality of life (HRQoL) and psychosocial health. FA leads to an increasing need for care, associated with an economic burden. Little is known about the impact of FA on daily lives and HRQoL. To fill that gap, we will assess patient-reported, psychosocial and economic outcomes using momentary data assessment via a mobile health application (app).Methods and analysisThe PROFA Study is a prospective observational study. Patients with FA (n=200) will be recruited at six European study centres (Germany, France and Austria). We will interview patients at baseline in the study centre and subsequently assess the patients’ health at home via mobile health app. Patients will self-report ataxia severity, HRQoL, speech and hearing disabilities, coping strategies and well-being, health services usage, adverse health events and productivity losses due to informal care on a daily to monthly basis on the app for 6 months. Our study aims to (1) validate measurements of HRQoL and psychosocial health, (2) assess the usability of the mobile health app, and (3) use descriptive and multivariate statistics to analyse patient-reported and economic outcomes and the interaction effects between these outcomes. Insights into the app’s usability could be used for future studies using momentary data assessments to measure outcomes of patients with FA.Ethics and disseminationEthical approval has been obtained from the Ethics Committee of the University Medicine of Greifswald, (BB096/22a, 26 October 2022) and from all local ethics committees of the participating study sites. Findings of the study will be published in peer-reviewed journals, presented at relevant international/national congresses and disseminated to German and French Patient Advocacy Organizations.Trial registration numberClinicalTrials.gov Registry (NCT05943002); Pre-results.

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Experiences of formal caregivers of elderly inpatients with physical disabilities in China: a qualitative study

Sun,

Zheng,

Chen

et al. 2024

BMC Nurs

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Aim To explore the views and experiences of formal caregivers caring for older inpatients with physical disabilities. Methods It was a qualitative phenomenological study. Using purposive sampling, twelve formal caregivers were chosen in a tertiary comprehensive hospital in Hangzhou, China. Semi-structured, face-to-face interviews were conducted, guided by open-ended questions that focused on gaining rich insights into participants’ views and experiences. Coding reliability thematic analysis was used to guide data analysis and categorize, based on Lazarus and Folkman’s theory of transactional coping. Results Four themes emerged from the data analysis: (1) Caregiving Threats. (2) motivations. (3) Responsibility Management. (4) Fear. Conclusion Despite facing significant pressure at work, formal caregivers of elderly inpatients with physical disabilities possess the drive and various coping strategies to excel in their role. Identifying caregivers’ experiences of care can be helpful in improving resilience to stress and maintaining stability in formal caregivers.

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Caregiver Burden in Movement Disorders and Neurodegenerative Diseases: Editorial

Abstract: Caregiver burden is still an unmet need in the treatment of many neurodegenerative diseases [...]

Cited by 3 publications

References 27 publications

Experiences of Formal Caregivers of Elderly Inpatients with Physical Disabilities in China: A Qualitative Study

Experiences of Formal Caregivers of Elderly Inpatients with Physical Disabilities in China: A Qualitative Study

Patient-reported, health economic and psychosocial outcomes in patients with Friedreich ataxia (PROFA): protocol of an observational study using momentary data assessments via mobile health app

Experiences of formal caregivers of elderly inpatients with physical disabilities in China: a qualitative study

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