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Health impact of objective burden, subjective burden and positive aspects of caregiving: an observational study among caregivers in Switzerland.

ABSTRACT: OBJECTIVE:To investigate associations of objective caregiver burden, subjective caregiver burden and positive aspects of caregiving with self-reported health indicators in caregiving partners of persons with a severe physical disability (spinal cord injury). DESIGN:Cross-sectional, observational. SETTING:Community, Switzerland. PARTICIPANTS:Caregiving partners of persons with spinal cord injury (n=118, response rate 19.7%). OUTCOME MEASURES:General health, role limitations due to physical health, role limitations due to mental health, pain intensity, mental health and vitality were assessed using items from the 36-Item Short Form Health Survey (SF-36). Three items were used to assess the frequency of different types of sleep problems. RESULTS:Subjective caregiver burden was associated to all self-reported health indicators. A high subjective burden was linked to poorer general health (OR 6.5, 95% CI 2.0 to 21.5), more role limitations due to physical health (OR 4.2, 95% CI 1.4 to 12.8), more role limitations due to mental health (OR 3.6, 95 % CI 1.1 to 11.7), higher pain intensity (OR 4.0, 95% CI 1.4 to 11.5), poorer mental health (coefficient -17.9, 95% CI -24.5 to -11.2), lower vitality (coefficient -20.3, 95% CI -28.4 to -12.1), and more frequent sleep problems (OR 5.3, 95% CI 1.6 to 18.4). Partners who indicated positive aspects of caregiving further reported better mental health (coefficient 6.5, 95% CI 0.2 to 12.8). Objective burden was not related to any health indicator. CONCLUSIONS:Subjective burden and lack of positive aspects of caregiving were associated with poorer physical and mental health. Caregiver health may be promoted through the strengthening of psychological and psychosocial resources.

SUBMITTER: Fekete C

PROVIDER: S-EPMC5770953 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundApp-based technologies could enhance patient and caregiver communication and provide alerts that potentially reducing readmissions. However, the burden of App alerts needs to be optimized to reduce provider burnout.AimThe purpose of this study was to determine subjective and objective burden of using the Patient Buddy App, a health information technology (HIT) on providers in a randomized multicenter trial, who completed a semi-quantitative Likert scale survey regarding training procedures, data and privacy concerns, follow-up details, and technical support. This randomized multicenter trial recruits cirrhosis inpatients and their caregivers, and randomizes them into standard-of-care, HIT (communication only via App) and HIT+visits (App+phone calls/visits) for 30 days after discharge. The alerts are monitored by providers through a central iPad. The reason(s) and number of alerts were recorded as the objective burden. A total of 1442 messages were sent as alerts from the 103 dyads (patient + caregiver) (n=206) randomized to HIT arms. The most common messages related to Hepatic Encephalopathy (HE) (high or low bowel movement=50% or orientation tests=37%). Twelve providers completed the surveys reflecting the following themes-92% and 100%, felt adequately trained and confident about educating the patients and caregivers before roll out of App and had no concerns related to data and privacy; 70%, felt that appropriate time was spent on pursuing reason for data not being logged; 60% each, had issues with availability of adequate technical support and connectivity.ConclusionThe Patient Buddy App randomized multicenter trial till date shows an overall favorable rating regarding training procedures/education, privacy concerns, and ease of message follow-up, from providers. However, it is important to gauge and address subjective and objective burdens of monitoring human resources in current and future HIT studies to avoid burnout and to ensure successful study completion.

Project description:In the Netherlands, about one-third of the adult population provides unpaid care. Providing informal caregiving can be very straining in normal times, but the impact of a public health crisis on caregivers is largely unknown. This study focuses on the question of how caregiver burden changed following the COVID-19 pandemic, and what characteristics were related to these changes. We use self-reported data from a sample of 965 informal caregivers from the Netherlands 3 months into the pandemic to investigate how the objective burden (i.e. hours spent on caregiving) and the subjective burden had changed, and what their care-related quality of life (CarerQol) was. We found that on average the subjective burden had increased slightly (from 4.75 to 5.04 on a 0-10 scale). However, our analysis revealed that some caregivers were more affected than others. Most affected caregivers were women, and those with low income, better physical health, decreased psychological health, childcare responsibilities, longer duration of caregiving and those caring for someone with decreased physical and psychological health. On average, time spent on care remained the same (a median of 15 h per week), but certain groups of caregivers did experience a change, being those caring for people in an institution and for people with a better psychological health before the pandemic. Furthermore, caregivers experiencing changes in objective burden did not have the same characteristics as those experiencing changes in perceived burden and quality of life. This shows that the consequences of a public health crisis on caregivers cannot be captured by a focus on either objective or subjective burden measures or quality of life alone. Long-term care policies aiming to support caregivers to persevere during a future crisis should target caregivers at risk of increased subjective burden and a lower CarerQol, such as women, people with a low income and people with childcare responsibilities. Such policies should consider that reducing objective burden may not necessarily lead to a reduction in subjective burden for all caregivers.

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Health impact of objective burden, subjective burden and positive aspects of caregiving: an observational study among caregivers in Switzerland.

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