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Impact of severe polyhandicap cared for at home on French informal caregivers' burden: a cross-sectional study.

ABSTRACT: OBJECTIVES:Polyhandicap (PLH), defined by a combination of profound intellectual impairment and serious motor deficits, is a severe condition with complex disabilities. In France, care of the large majority of PLH individuals is managed in specialised rehabilitation centres or residential facilities, but some of PLH individuals are cared for at home. The aims of this study were to assess the self-perceived burden among informal caregivers of PLH individuals and to identify potential determinants of this burden. DESIGN:Cross-sectional study (Neuropaediatric Department, Trousseau Hospital, Paris, France). SETTINGS:PLH children were recruited from a specialised paediatric/neurological department. PARTICIPANTS:The selection criteria of caregivers were age above 18 years and being the PLH individual's next of kin. OUTCOMES MEASURES:From March 2015 to December 2016, data were collected from the caregivers, including sociodemographical data, health status, psycho-behavioural data (quality of life, mood disorders and coping) and self-perceived burden. In addition, the health status of the PLH individual was collected. Relationships between the burden scores and potential determinants were tested (correlations coefficients, Mann-Whitney tests, generalised estimating equations models). RESULTS:Eighty-four children were eligible; 77 families returned their questionnaire. The informal caregivers of PLH children experienced a high level of perceived burden (scores ranged from 55±20?to 81±12). Eighty per cent of them had more than 5?hours of daily caregiving and 51% of them had to get up more than twice during the night. The main factors associated with caregiver burden were age, financial issues, health status, daily care and coping strategies. The patients' health status was not associated with caregiver burden. CONCLUSIONS:Some of the caregiver burden determinants might be modifiable. These findings should help healthcare workers and health-decision makers implement specific and appropriate interventions. TRIAL REGISTRATION NUMBER:NCT02400528.

SUBMITTER: Rousseau MC

PROVIDER: S-EPMC7045096 | biostudies-literature | 2020 Feb

REPOSITORIES: biostudies-literature

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Impact of severe polyhandicap cared for at home on French informal caregivers' burden: a cross-sectional study.

Rousseau Marie-Christine MC Baumstarck Karine K Valkov Maria M Felce Agnés A Brisse Catherine C Khaldi-Cherif Sherezad S Loundou Anderson A Auquier Pascal P Billette de Villemeur Thierry T

BMJ open 20200202 1

<h4>Objectives</h4>Polyhandicap (PLH), defined by a combination of profound intellectual impairment and serious motor deficits, is a severe condition with complex disabilities. In France, care of the large majority of PLH individuals is managed in specialised rehabilitation centres or residential facilities, but some of PLH individuals are cared for at home. The aims of this study were to assess the self-perceived burden among informal caregivers of PLH individuals and to identify potential dete ...[more]

PMID: 32014871

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Project description:BackgroundCaregiving responsibility can change caregivers' lives; modify their emotions; and make them feel frustrated, fearful, and nervous, thereby imposing physical and mental stress. Caregiving-related mobile apps provide a platform for obtaining valuable and trusted information, connecting more easily with other caregivers, monitoring medications, and managing appointments, and assessing health requirements and conditions of care receivers. Such apps also incorporate valuable resources that address care for the caregivers. Despite the potential benefits of caregiving-related apps, only a limited number of caregivers have adopted and used them.ObjectiveThe aim of this study is to explore the important factors that affect caregivers' intentions to integrate related mobile apps into their routine caregiving responsibilities.MethodsUsing the protection motivation theory, we conducted a cross-sectional study among 249 participants. Purposive sampling was used to target participants who met 4 inclusion criteria: US residents, owning and using a smartphone, informal caregivers (individuals who give care to a friend or family member without payment) who provided at least 8 hours of care per week in the past year, and those currently not using any mobile app for caregiving purposes. We created a survey using Qualtrics and posted it on Amazon's Mechanical Turk website. Participants received monetary compensation after successful completion of the survey.ResultsWe found that capabilities and skills of caregivers to use mobile apps, the app's effectiveness in responding to the needs of caregivers, the degree of control of caregivers over their responsibilities, and the decisions they make for their care receivers can predict their willingness to adopt caregiving-related apps. In addition, the severity of health status and vulnerability of care receivers to unexpected health changes indirectly shape their caregivers' decisions to adopt and use mobile apps for caregiving purposes.ConclusionsThis study explores the important factors that affect informal caregivers' intentions to adopt related mobile apps into their routine caregiving responsibilities. The results contribute to both mobile health adoption and the caregiving literature, and they offer significant implications for developers, health care practitioners, and policy makers.

Project description:BackgroundGlobally, families play a critical role in providing care and support for persons living with schizophrenia. It is important to identify potentially modifiable factors that influence perceived caregiver burden in order to properly address the needs of caregivers. This is especially relevant in low-resource settings where psychiatric services are scarce and interventions could be most effective if targeted to both the individual living with schizophrenia and their caregiver. This study examines correlates of perceived burden among informal caregivers of individuals with schizophrenia in Tanzania, in particular, the association between burden and caregiver-reported family functioning.MethodsThis study used baseline data from an individually randomized controlled trial with 65 pairs of individuals with schizophrenia and their informal caregivers in Dar es Salaam and Mbeya, Tanzania. Caregiver burden was measured using the Burden Assessment Scale. Univariable and multivariable regression analyses were performed to determine the relationship between caregiver burden and family functioning and to explore other correlates of burden.ResultsSixty-three percent of caregivers reported experiencing high burden as a result of caring for a relative with schizophrenia. Multivariable regression analyses revealed that poor family functioning and the caregiver being employed were associated with high caregiver burden, while higher levels of hopefulness in the caregiver was associated with low caregiver burden.ConclusionCaregivers who were employed, reported poor family functioning, and/or had low levels of hopefulness were more likely to perceive high caregiver burden. Future interventions aiming to reduce caregiver burden may benefit from improving family functioning and nurturing hope among caregivers of individuals living with schizophrenia. Policies and programs should be cognizant of the needs of caregivers that work in addition to providing care for a relative with schizophrenia in order to better support them.

Project description:BackgroundWeb-based interventions have shown promise for chronic disease management but have not been widely applied to populations with stroke. Existing barriers may inhibit the adoption of web-based interventions among stroke survivors and necessitate the involvement of informal caregivers. However, limited information is available on internet accessibility and usability among stroke survivors and their caregivers.ObjectiveThis study aims to investigate internet access and usage in a cohort of stroke survivors and their caregivers.MethodsA cross-sectional survey was conducted with 375 participants (248 stroke survivors and 127 caregivers). Descriptive statistics were generated using cross-tabulation. Comparisons with categorical data were conducted using the chi-square test, whereas the Mann-Whitney U test was used for comparisons involving ordinal variables.ResultsOverall, 86.1% (323/375) of the participants reported having internet access. Caregivers were more likely than stroke survivors to access the internet (N=375, χ21=18.5, P<.001) and used text messaging (n=321, χ21=14.7, P<.001). Stroke survivors and caregivers with internet access were younger than stroke survivors and caregivers without internet access. The highest number of participants who reported internet access were non-Hispanic White. Smartphones were the most common devices used to access the internet. Email was the most common type of internet usage reported. Patients who survived for >12 months after a stroke reported higher internet access than those who survived <3 months (P<.001). The number of hours per week spent using the internet was higher for caregivers than for stroke survivors (P<.001).ConclusionsFuture feasibility and acceptability studies should consider the role of the informal caregiver, participant age, race and ethnicity, the use of smartphone apps, email and text correspondence, and the amount of time elapsed since the stroke event in the design and implementation of web-based interventions for populations with stroke.

Project description:BACKGROUND:The world is facing many socio-demographic changes, such as an increased average life expectancy and the presence of chronic and non-communicable diseases, which in turn, leads to an enhanced dependency on others. Consequently, the demand for informal caregivers has significantly increased during the past few years. Caring for a dependent person is linked to a series of burdens that often leads to physical, psychological and emotional difficulties. Taking into consideration the difficulties faced by informal caregivers, knowing in which areas of functioning they need more guidance may help to relieve their burden. Therefore, the main goal of this study is to better understand the needs and competencies of the informal caregiver when caring for a dependent person in the different self-care domains. METHODS:This cross-sectional study used a questionnaire administered on a single occasion by face-to-face interview. Descriptive and inferential statistics alongside non-parametric statistical techniques such as the Mann-Whitney test and Spearman's correlation were used. RESULTS:The average age of the 143 informal caregivers is 58 years old, with the youngest in our sample being 21 years of age. Most of them are female, and 50% of them are children taking care of one of their parents. Most of the dependent people are completely dependent in the areas of comfort and hygiene (53.8%) and medication management (55.9%). The female informal caregivers see themselves as having more competencies in sanitary hygiene than the male ones, with no significant differences in their competencies' perception in the other areas of self-care. Older caregivers see themselves as less competent in certain areas of self-care such as feeding, mobility, transfers, medication and symptoms management and communication. Most of the information given to the informal caregiver is about the disease (82.3%) and the medication management (80.4%). There are still a lot of areas of self-care, where no information, or almost none, is given to the informal caregivers. CONCLUSIONS:Before home discharge of a dependent person, it is important to acknowledge the needs and competencies of the informal caregiver, to capacitate them in looking after their relatives, to help decrease their burden and consequently, decrease the number of hospital readmissions.

Project description:BackgroundDegenerative cervical myelopathy (DCM) is a common, chronic neurological condition that severely affects individuals by causing a range of disabling symptoms, frequently at a time around the peak of their careers. Subsequently, individuals with DCM often become dependent on informal care arrangements. The significant economic contribution of informal care and its burden on care providers are becoming increasingly recognized.ObjectiveThis study aimed to measure the quality of life of DCM informal caregivers and provide preliminary insight into possible contributing factors.MethodsCarers of individuals with DCM completed a Web-based survey hosted by Myelopathy.org, an international DCM charity. Carer quality of life was assessed in the form of caregiver happiness and 7 dimensions of carer burden using the Care-Related Quality of Life (CarerQol) instrument. The relationships between patient disease severity, patient pain, and carer quality of life were investigated. Differences in carer quality of life were assessed across patient and carer demographic groups, including between UK and US carers.ResultsDCM caregivers experienced substantial burden as a result of their caregiving (mean CarerQol-7D=64.1; 95% CI 58.8-69.5) and low happiness (mean CarerQol-VAS [Visual Analog Scale]=6.3; 95% CI 5.7-6.9). Burden was high and happiness was low in DCM carers when compared with a large, mixed-disease study of adult informal carers where CarerQol-7D was 79.1 and CarerQol-VAS was 7.1. No significant relationship was found between DCM carer quality of life and patient disease severity and pain scores. DCM carer quality of life appeared uniform across all patient and carer demographic groups.ConclusionsCaring for individuals with DCM is associated with reduced quality of life in the form of significant burden and reduced happiness. Reductions appear greater in DCM than in other diseases investigated. However, no simple relationship was identified between individual patient or carer factors and carer quality of life.

Dataset Information

Impact of severe polyhandicap cared for at home on French informal caregivers' burden: a cross-sectional study.

Publications

Impact of severe polyhandicap cared for at home on French informal caregivers' burden: a cross-sectional study.

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