scholarly journals Perceived burden and family functioning among informal caregivers of individuals living with schizophrenia in Tanzania: a cross-sectional study

2022 ◽  
Vol 22 (1) ◽  
Author(s):  
Rosarito Clari ◽  
Jennifer Headley ◽  
Joseph Egger ◽  
Praxeda Swai ◽  
Paul Lawala ◽  
...  
Keyword(s):  
Family Functioning ◽  
Caregiver Burden ◽  
Controlled Trial ◽  
Critical Role ◽  
Informal Caregivers ◽  
Regression Analyses ◽  
Poor Family ◽  
Perceived Burden ◽  
Modifiable Factors ◽  
Multivariable Regression

Abstract Background Globally, 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. Methods This 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. Results Sixty-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. Conclusion Caregivers 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.

scholarly journals Caregiver Burden and Quality of Life in Late Stage Parkinson’s Disease

2022 ◽  
Vol 12 (1) ◽  
pp. 111
Author(s):  
Kristina Rosqvist ◽  
Anette Schrag ◽  
Per Odin ◽  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Linear Regression ◽  
Caregiver Burden ◽  
Male Patient ◽  
Late Stage ◽  
Informal Caregivers ◽  
Regression Analyses ◽  
Patient Gender

Parkinson’s disease (PD) is a chronic, progressive, neurodegenerative disease involving both motor and non-motor symptoms (NMS). In the late stage of the disease, Hoehn and Yahr (H&Y) stage IV-V, the symptomatology is often severe and patients become increasingly dependent on help in their daily life, resulting in an increased burden for the informal caregivers. To assess the implications of the caregiver burden, caregiver quality of life (QoL) was assessed in 74 informal caregivers to patients in late stage PD, by the Alzheimer’s Patient Partners Life Impact Questionnaire (APPLIQue), which has been found useful also in PD. The majority of caregivers were the spouse/partner. Individual items provided information on which aspects of caregiver burden were the most common, i.e., items: “feel guilty if not there (71% affirmed)”, “the situation wears me down” (65% affirmed) and “always on my mind” (61% affirmed). In simple linear regression analyses, male patient gender (p = 0.007), better cognition (p = 0.004), lower NMS burden (p = 0.012) and not being the partner (p = 0.022) were associated with better caregiver QoL. Multivariable linear regression analyses identified better cognition (p = 0.004) and male patient gender (p = 0.035) as independently associated with better informal caregiver QoL. Identifying and treating NMS as well as recognizing and alleviating caregiver burden seem essential to enhance QoL for both patients and caregivers in late stage PD.

scholarly journals Technology Intervention to Support Caregiving for Alzheimer's Disease (I-CARE): Study Protocol for a Randomized Controlled Pilot Trial

2020 ◽  
Author(s):  
Tyler Braly ◽  
Doris Muriathiri ◽  
Janetta C. Brown ◽  
Britain M. Taylor ◽  
Malaz A. Boustani ◽  
...  
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Caregiver Burden ◽  
Controlled Trial ◽  
Informal Caregivers ◽  
Pilot Trial ◽  
Complex Spectrum ◽  
Post Intervention ◽  
Health Crisis ◽  
Randomized Controlled

Abstract Background: Informal caregivers of patients with Alzheimer's disease and related dementias (ADRD) manage a complex spectrum of patient behavioral and psychological symptoms of dementia (BPSD). Mobile health information technologies have quickly become sources for modern social support and chronic disease management. These technologies can improve our understanding of how to care for patients with ADRD and their informal caregivers. A mobile telehealth intervention could help reduce caregiver burden and BPSD. Methods: This is a pilot randomized controlled trial of 60 dyads of patients living with ADRD and their caregivers, to test the feasibility and estimate the effect of the Brain CareNotes (BCN) mobile telehealth system. Participants will be recruited from two health systems. Participants will be randomly assigned to either the BCN intervention arm or usual care comparator. Data will be collected at baseline, 3- and 6-month follow-up. The primary objectives of this trial are to assess feasibility outcomes: (a) recruitment rate; (b) data completion; (c) BCN usability; (d) BCN acceptance; and (e) BCN use, assessed either on an ongoing basis or at 3- and 6-months post-intervention. A secondary objective was to estimate the intervention’s effects on caregiver burden and patient BPSD outcomes at 3 and 6 months, assessed by the Neuropsychiatric Inventory.Discussion: The study will assess the intervention feasibility and effect size of the BCN telehealth system as a potentially scalable and lower-cost solution for addressing the ADRD public health crisis.Trial Registration: Clinical Trials. NCT03119259. Registered 4/18/2017. Clinicaltrials.gov/ct2/show/NCT03119259

Correlates of and interrelationships among social stressors, relationship quality, and family functioning among informal cancer caregivers.

2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 230-230
Author(s):  
Erin E. Kent ◽  
Kristin Litzelman ◽  
Julia Howe Rowland
Keyword(s):  
Palliative Care ◽  
Family Functioning ◽  
Relationship Quality ◽  
Cancer Patients ◽  
Social Factors ◽  
Social Stress ◽  
Critical Role ◽  
Informal Caregivers ◽  
Well Being ◽  
Effect Sizes

230 Background: Informal/family caregivers play a critical role in supporting cancer patients and are often an important part of the palliative care team. To better understand how informal caregivers are influenced by their role and inform future interventions, this study sought to evaluate the distribution and correlates of social and family factors among caregivers of cancer patients. Methods: This cross-sectional study used data from the Cancer Care Outcomes Research & Surveillance Consortium (CanCORS). Lung and colorectal cancer patients nominated an informal caregiver to participate in a caregiving survey. Caregivers reported their sociodemographic and caregiving characteristics, social stress, relationship quality with the patient, and family functioning. Descriptive statistics were used to assess the distribution of caregivers’ social factors. Multivariable linear regressions were used to examine the independent correlates of each social factor. Results: Most caregivers reported low-to-moderate levels of social stress and good relationship quality and family functioning. In multivariable analyses older age was associated with lower social stress and better family functioning, but worse relationship quality, with effect sizes (Cohen’s D) up to 0.40 (p < 0.05). Caring for a female patient was associated with lower social stress and better relationship quality, but worse family functioning (effect sizes up to 0.16, p < 0.05). Few caregiving characteristics were associated with social stress, while several were significant independent correlates of relationship quality. Finally, social factors were important independent correlates of one another. Conclusions: The results highlight the importance of personal and caregiving-related characteristics and the broader family context to social factors. As social factors may play an important role in the health, quality of life, and caregiving efficacy of informal caregivers, future work is needed to better understand these pathways and assess whether interventions targeting social factors can improve caregiver well-being, thereby potentially improving patient-centered palliative care.

scholarly journals Impact of severe polyhandicap cared for at home on French informal caregivers’ burden: a cross-sectional study

BMJ Open ◽  
2020 ◽  
Vol 10 (1) ◽  
pp. e032257
Author(s):  
Marie-Christine Rousseau ◽  
Karine Baumstarck ◽  
Maria Valkov ◽  
Agnés Felce ◽  
Catherine Brisse ◽  
...  
Keyword(s):  
Health Status ◽  
Caregiver Burden ◽  
Informal Caregivers ◽  
Cross Sectional Study ◽  
Motor Deficits ◽  
Sectional Study ◽  
Cross Sectional ◽  
Perceived Burden ◽  
And Coping ◽  
At Home

ObjectivesPolyhandicap (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.DesignCross-sectional study (Neuropaediatric Department, Trousseau Hospital, Paris, France).SettingsPLH children were recruited from a specialised paediatric/neurological department.ParticipantsThe selection criteria of caregivers were age above 18 years and being the PLH individual’s next of kin.Outcomes measuresFrom 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).ResultsEighty-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.ConclusionsSome 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 numberNCT02400528.

Associations Between Informal Caregivers’ Burden and Educational Level

GeroPsych ◽  
2019 ◽  
Vol 32 (1) ◽  
pp. 19-29 ◽  
Author(s):  
Monika Oedekoven ◽  
Katja Amin-Kotb ◽  
Paul Gellert ◽  
Klaus Balke ◽  
Adelheid Kuhlmey ◽  
...  
Keyword(s):  
Support Services ◽  
Educational Level ◽  
Autonomy Support ◽  
Population Survey ◽  
Multivariate Analyses ◽  
Informal Caregivers ◽  
Loss Of Self ◽  
Perceived Burden ◽  
Result Show ◽  
Care Situation

Abstract. We investigated the association between the education of informal caregivers’ (IC) and their physical and mental burden. We hypothesized that better-educated IC would have more resources available to manage the care situation and as a result show lower perceived burden. We conducted a population survey of 6,087 German residents aged 18+ years, 966 of whom reported to be IC. Results show that IC felt more often mentally than physically burdened. In the multivariate analyses, higher-educated IC did not have lower odds of feeling physically burdened than lower-educated IC, though they did have increased odds of feeling mentally burdened. The higher perceived mental burden of higher-educated IC may be related to fear of loss of self-fulfilment and autonomy. Support services should consider the mental burden of higher-educated IC and tailor their interventions accordingly.

Diet and Contaminants: Driving the Rise to Obesity Epidemics?

2019 ◽  
Vol 26 (19) ◽  
pp. 3471-3482 ◽  
Author(s):  
Agostino Di Ciaula ◽  
Piero Portincasa
Keyword(s):  
Dietary Habits ◽  
Maternal Diet ◽  
Critical Role ◽  
Food Contaminants ◽  
Obesity Epidemic ◽  
Gene Environment ◽  
Generational Transmission ◽  
Modifiable Factors ◽  
Toxic Food ◽  
Diet And Lifestyle

The obesity epidemic is spreading worldwide without reversal trend and despite specific policies oriented to dietary habits and lifestyle, which seem to have modest effects. Genetic factors only partly explain the rise, whereas environmental factors seem to play a key role, mainly by gene-environment interactions through epigenetic mechanisms. A number of animal and human studies point to maternal diet, intestinal microbiota and chemicals introduced as contaminants with food, all factors able to increase the risk of obesity. Widely diffused toxics (mainly BPA, phthalates, pesticides) are able to promote obesity in children and adults, mainly by acting on the differentiation pathway linking multipotent stromal stem cell to mature adipocyte, modulating epigenetic factors and influencing a series of mechanisms finally leading to altered dietary habits, increased adipocyte formation and fat storage. Furthermore, the adipose tissue is an important target for several chemicals (mainly POPs) which represent a threat to metabolic health. In conclusion, besides excessive individual energy intake and inadequate lifestyle, other broadly diffused and modifiable factors (mainly ingestion of toxic chemicals with food) seem to have a critical role in the rapid epidemiological growing of obesity, also considering trans-generational transmission of risk and later development of obesity due to exposure during early life. Further studies are needed, to better assess interactions between cumulative effects of toxic food contaminants and modification of diet and lifestyle, and to verify the efficacy of primary prevention strategies acting on all these factors and potentially able to reverse the continuous rising of the obesity epidemic.

scholarly journals Evaluating the provision of Further Enabling Care at Home (FECH+) for informal caregivers of older adults discharged home from hospital: protocol for a multicentre randomised controlled trial

BMJ Open ◽  
2021 ◽  
Vol 11 (6) ◽  
pp. e046600
Author(s):  
Anne-Marie Hill ◽  
Rachael Moorin ◽  
Susan Slatyer ◽  
Christina Bryant ◽  
Keith Hill ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Randomised Controlled Trial ◽  
Usual Care ◽  
Controlled Trial ◽  
Informal Caregivers ◽  
Care Recipient ◽  
Care At Home ◽  
Randomised Controlled

IntroductionThere are personal and societal benefits from caregiving; however, caregiving can jeopardise caregivers’ health. The Further Enabling Care at Home (FECH+) programme provides structured nurse support, through telephone outreach, to informal caregivers of older adults following discharge from acute hospital care to home. The trial aims to evaluate the efficacy of the FECH+ programme on caregivers’ health-related quality of life (HRQOL) after care recipients’ hospital discharge.Methods and analysisA multisite, parallel-group, randomised controlled trial with blinded baseline and outcome assessment and intention-to-treat analysis, adhering to Consolidated Standards of Reporting Trials guidelines will be conducted. Participants (N=925 dyads) comprising informal home caregiver (18 years or older) and care recipient (70 years or older) will be recruited when the care recipient is discharged from hospital. Caregivers of patients discharged from wards in three hospitals in Australia (one in Western Australia and two in Queensland) are eligible for inclusion. Participants will be randomly assigned to one of the two groups. The intervention group receive the FECH+ programme, which provides structured support and problem-solving for the caregiver after the care recipient’s discharge, in addition to usual care. The control group receives usual care. The programme is delivered by a registered nurse and comprises six 30–45 min telephone support sessions over 6 months. The primary outcome is caregivers’ HRQOL measured using the Assessment of Quality of Life—eight dimensions. Secondary outcomes include caregiver preparedness, strain and distress and use of healthcare services. Changes in HRQOL between groups will be compared using a mixed regression model that accounts for the correlation between repeated measurements.Ethics and disseminationParticipants will provide written informed consent. Ethics approvals have been obtained from Sir Charles Gairdner and Osborne Park Health Care Group, Curtin University, Griffith University, Gold Coast Health Service and government health data linkage services. Findings will be disseminated through presentations, peer-reviewed journals and conferences.Trial registration numberACTRN12620000060943.

Factors of Dementia Caregiver Burden Differentially Contribute to Desire to Institutionalize

2021 ◽  
pp. 089198872110361
Author(s):  
John T. Martin ◽  
Kimberly R. Chapman ◽  
Christopher Was ◽  
Mary Beth Spitznagel
Keyword(s):  
Factor Analysis ◽  
Linear Regression ◽  
Factor Structure ◽  
Caregiver Burden ◽  
Living Arrangements ◽  
Regression Analyses ◽  
Loved One ◽  
Dementia Caregiver ◽  
Future Work ◽  
Made In

The experience of dementia caregiver burden is multidimensional. Little is known about how different aspects of burden contribute to the consideration of moving a loved one to a structured living facility. In the present study, caregiver burden (Zarit Burden Interview; ZBI) and consideration of structured living arrangements (Desire to Institutionalize Scale; DIS) were self-reported by 339 caregivers. Exploratory factor analysis was used to determine the ZBI factor structure; these factors were then examined via hierarchical linear regression for prediction of DIS. Factor analysis indicated a 4-factor ZBI solution: Impact on Life, Guilt, Embarrassment/Frustration, and Escape/Uncertainty. Regression analyses indicated that only Escape/Uncertainty ( p < .001) was associated with DIS. Of the 4 identified factors of caregiver burden, desire to escape the caregiving role was most related to consideration of structured living arrangements. Future work should explore longitudinal contribution of this factor to determine its role in actual changes made in living arrangements.

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