Formal Caregivers Research Articles

Depression, Anxiety and Stress in Formal and Informal Caregivers of Autistic Children in Karachi

Depression, Anxiety and Stress in Formal and Informal Caregivers of Autistic Children in Karachi

Empowering Active and Healthy Ageing: Integrating IoT and Wearable Technologies for Personalised Interventions

Social isolation and loneliness greatly contribute to negative health consequences in older adults. Technological solutions can be an asset in promoting social connections and healthy behaviours. This paper presents an innovative structure for an Internet of Things (IoT) platform specifically tailored for older persons. The framework utilises a supervised learning algorithm to classify users into four identified profiles to facilitate the adoption and engagement of technology. The platform incorporates wearables, such as socks and smart bands, to track physical activity, and a messaging module to encourage social interaction. The platform processes the acquired data to quantify steps and deliver tailored interventions remotely to the older adults through the AGAPE Assistant, the mHealth solution of the platform. Furthermore, the AGAPE Assistant has a user interface design for older adults, with a focus on their specific needs. Additionally, improving digital literacy among older adults is crucial for maximizing the long-term compliance and benefits of such technological solutions. On the other hand, AGAPE Monitor is a web application used by formal caregivers to configure the tailored interventions. The platform’s usability was assessed using different usability scale questionnaires, which revealed a mild level of user satisfaction and acceptance. The proposed framework is currently being deployed on more than 112 older adults across three countries: Italy, Romania, and Portugal. The proposed framework provides a holistic solution to encourage active ageing by adopting technology, implementing hybrid interventions, and promoting social interactions.

Exploring the lived experiences and care challenges of formal paid caregivers for people with intellectual disability and dementia.

A greater number of people with intellectual disability are living into older age and are at increased risk of developing conditions such as dementia. Caring for a person with dementia presents several challenges for formal caregivers due to the progressive nature of the disease. An interpretive phenomenological analysis was used to understand the lived experiences of a purposive sample of formal caregivers in caring for people with intellectual disability and dementia. Discussions from 14 individual interviews generated data were analysed. Four key super-ordinate themes emerged which were: (1) recognising early indicators and diagnosis, (2) post diagnostic support, (3) coping with change and (4) need for future development. Themes reflected the experiences, barriers to dementia diagnosis and provide a valuable insight into the challenges faced by formal caregivers in providing aged care services.

Delivering Integrated Community Care for the Elderly: A Qualitative Case Study in Southern China.

The rapid aging and increasing care demands among the elderly population present challenges to China's health and social care system. The concept of aging in place has prompted the implementation of integrated community care (ICC) in the country. This study aims to provide empirical insights into the practices of integrated care policies and approaches at the community level. Data for this study were collected through six months of participatory observations at a local community health service center in a southern Chinese city. Semi-structured interviews were conducted with the multidisciplinary community care team to gather frontline formal caregiver perceptions of ICC, thereby facilitating a better understanding of the obstacles and opportunities. Qualitative analysis revealed four themes: the ICC delivery model and development strategies within the community care scheme, the person-centered guiding principle, and the challenges and struggles encountered by formal caregivers within China's current ICC system. The case study presented herein serves as a notable example of the pivotal role of primary care in the successful implementation of elderly care within a community setting. The adoption of a private organization-led approach to medico-social integration care in the community holds significant potential as a service delivery model for effectively addressing a wide range of elderly care issues.

Informal care after hip fracture: prospective cohort.

Hip fracture is very common and it has life-shattering consequences for older persons. After discharge the older persons need help with even basic everyday activities from formal and informal caregivers. In Scandinavia formal care are well-developed however the presence of informal caregivers likely reflect on the amount of formal care and wears on the informal caregivers. This study explore how often and how much informal care (IC) older persons receive after hip fracture. We contacted 244 community-dwelling older persons every two weeks the first twelve weeks after discharge after hip fracture and asked them if they received care from family and/or friends and how much. We used non-parametric statistics and level of significance was 95%. The proportion of older persons receiving IC was 90% and the median amount of IC was 32 hours (IQR 14-66). The number of older persons who received IC was highest the first four weeks after discharge and so was the amount of hours of IC. The older persons that were high-dependence on IC received a median of 66 (IQR 46-107) hours compared to the low-dependent of 11 hours (IQR 2-20). IC is very frequent, especially the first two to four weeks after discharge. The median IC was 32 hours from discharge to the 12-week follow-up. However, this figure tended to rise for persons with, among other, reduced functionality and those residing with a partner. With respect to local differences, the findings in this study are likely applicable to other Scandinavian countries. We strongly suggest that the variation in older person need for informal caregiver be given consideration in the prioritisation of resources. This prospective cohort study of informal care, was part of a cluster-randomised stepped-wedge clinical controlled trial. Written consent was obtained required by regional ethics committee S-20200070. Data was collected in accordance with the Danish Data Protection Agency (20-21854).

Researching the social aspects of dementia from a social work perspective

The issues associated with dementia are challenging for social workers, who have a lot of direct contact with people with dementia, as well as their support networks. These networks play a key role in the care of people with dementia. Social workers differ from other professionals in that they are aware of the urgency of attending to social justice, as well as the implementation of human rights, participation and equality. Recognising the experiences of people with dementia is of paramount relevance to social work, as it provides insight into their needs and the aptness of existing forms of assistance in responding to their needs. Through this approach, those working in social work strive to find new forms of help to enable people with dementia to live independently in their community. It is important to find ways to involve people with dementia as active co-creators in the helping process and in exploring the social perspectives of dementia. In the present paper, we present the literature review on experience of researching dementia from a social work perspective in Slovenia and Croatia—two countries with similarities in the development of social work and its research. The inclusion of people with Alzheimer's disease or dementia in research is very complex. Both professionals working with people with dementia (formal caregivers) and family members (mostly informal caregivers) face various difficulties and pressures. It is therefore important to consider research ethics and respect existing legal frameworks and informed consent. An individualised approach should be used to include people with dementia in research to meet their need for personal worth and dignity (despite numerous mental and functional deficits). Ultimately, all research should strive to determine the true situation of people with dementia and their needs, with the aim of using and developing their remaining abilities to improve the quality of life for both those people and those who provide care for them.

How Social Connectedness Helps Patients Stay Home After Hospital at Home Enrollment: A Mixed Methods Study.

While enrolled in Hospital at Home (HaH) programs, patients rely on their social network to provide supportive behaviors that are routinely provided by hospital staff in the inpatient setting. This study investigated how social connectedness is associated with patient outcomes in a HaH program. The explanatory iterative sequential mixed methods design included an electronic health record review to collect quantitative measures to describe the severity of patient illness and healthcare utilization and then qualitative interviews to explain quantitative findings. The quantitative phase included 100 patients (18years or older) admitted to the hospital who were subsequently enrolled in the HaH program. In the qualitative phase, 33 of the 100 patients participated in semi-structured interviews. Qualitative data was analyzed using the Sort & Sift, Think & Shift method. Integrated analysis included merged data displays of healthcare utilization data and patient descriptions of their care and genogram-type illustrations to enable variable-oriented analysis of structural support. We then examined patient narratives by two variables: life course and care elevation, to understand differences in the trajectories of six subsets of patients as identified by the quantitative data. Three factors prompted patients to enroll in HaH: low attention from hospital staff during hospital stay; loneliness and isolation during hospital stay; and family encouragement to enroll. After discharge, social support within the home structure facilitated recovery during HaH. Conversely, HaH patients with limited support within the home were more likely to be readmitted. Structural social connectedness facilitates patient recovery in HaH. Before enrolling patients in HaH, clinicians should take an in-depth social history, including questions about social/familial roles, household responsibilities, and technology acceptance. Clinicians should engage formal and informal caregivers in these conversations early and communicate a clear picture of what caregivers should do to support the patient through recovery.

Evaluation of ChatGPT’s responses to information needs and information seeking of dementia patients

Many people in the advanced stages of dementia require full-time caregivers, most of whom are family members who provide informal (non-specialized) care. It is important to provide these caregivers with high-quality information to help them understand and manage the symptoms and behaviors of dementia patients. This study aims to evaluate ChatGPT, a chatbot built using the Generative Pre-trained Transformer (GPT) large language model, in responding to information needs and information seeking of such informal caregivers. We identified the information needs of dementia patients based on the relevant literature (22 articles were selected from 2442 retrieved articles). From this analysis, we created a list of 31 items that describe these information needs, and used them to formulate 118 relevant questions. We then asked these questions to ChatGPT and investigated its responses. In the next phase, we asked 15 informal and 15 formal dementia-patient caregivers to analyze and evaluate these ChatGPT responses, using both quantitative (questionnaire) and qualitative (interview) approaches. In the interviews conducted, informal caregivers were more positive towards the use of ChatGPT to obtain non-specialized information about dementia compared to formal caregivers. However, ChatGPT struggled to provide satisfactory responses to more specialized (clinical) inquiries. In the questionnaire study, informal caregivers gave higher ratings to ChatGPT's responsiveness on the 31 items describing information needs, giving an overall mean score of 3.77 (SD 0.98) out of 5; the mean score among formal caregivers was 3.13 (SD 0.65), indicating that formal caregivers showed less trust in ChatGPT's responses compared to informal caregivers. ChatGPT’s responses to non-clinical information needs related to dementia patients were generally satisfactory at this stage. As this tool is still under heavy development, it holds promise for providing even higher-quality information in response to information needs, particularly when developed in collaboration with healthcare professionals. Thus, large language models such as ChatGPT can serve as valuable sources of information for informal caregivers, although they may not fully meet the needs of formal caregivers who seek specialized (clinical) answers. Nevertheless, even in its current state, ChatGPT was able to provide responses to some of the clinical questions related to dementia that were asked.

Gendered Trends in Formal and Informal Care Utilization Among Older Adults in South Korea

ABSTRACT Drawing on data from two waves of the Korean Longitudinal Study of Ageing (2010 and 2018), this study examined how community-dwelling older men and women (65+) with functional limitations utilized formal and informal sources of care and how their patterns of care utilization changed over time. The usage patterns of formal and informal caregiving services were categorized into three groups: (a) informal help only, (b) formal-informal mix, and (c) no help from either. More men and women used both formal and informal help for their care needs in 2018 than in 2010 (15% compared to 7%). The proportion of older men who relied on informal help only remained similar across survey years, whereas a smaller proportion of older women relied on informal help only in 2018. Although formal care use has been expanded in South Korea, older men continue to utilize help from their families. However, for older women, the proportion who did not receive any help increased – despite an increase in formal care utilization. These findings highlight the importance of considering gendered resources in caregiving in Korea.

Older adults preferences for long-term caregivers in China: a discrete choice experiment

ObjectiveUnderstanding the preferences of old-age adults for their long-term caregivers can improve person-centred health care and the quality of long-term care (LTC). This study examines Chinese older adults’ preferences for long-term caregivers. Study designThis is a cross-sectional study. MethodsA national representative discrete choice experiment (DCE) surveyed 2031 adults aged 50–70 across 12 provinces in China. Each DCE scenario described five attributes: type of caregivers, place of LTC, contents of LTC, out-of-pocket payments, and quality of life (QoL). Preferences and the marginal willingness to pay (WTP) were derived using mixed-logit and latent class models. ResultsOlder adults displayed higher preferences for long-term caregivers who improve their QoL, incur lower out-of-pocket payments, and provide medical LTC services at home, with the maximum WTP of $22.832 per month. QoL was rated as the most important LTC factor, followed by the place of LTC and the type of caregivers. When the level of QoL improved from poor to good, respondents would be willing to pay $18.375 per month more (95% confidence interval: 16.858 to 20.137), and the uptake rate increased by 76.47%. There was preference heterogeneity among older people with different sex, education, family size, and knowledge of LTC insurance. ConclusionQoL was the most important factor in older Chinese adults' preference for caregivers. Home care and medical care from formal caregivers was preferred by older adults. We recommend training family caregivers, raising older people's awareness of LTC insurance, and guiding policymakers in developing people-oriented LTC and a multi-level LTC system.

Virtual reality-based dementia educational programmes for formal and informal caregivers of people with dementia: A scoping review.

To map evidence of the existing virtual reality-based dementia educational programmes and the effects of these educational programmes on dementia formal and informal caregivers. A scoping review. A comprehensive search of nine databases was conducted to find studies from the inception of the databases to October 2023. Two authors independently screened the titles and abstracts related to the eligibility criteria. Full texts of potentially relevant studies were read by one author and checked by a second. Data extraction and synthesis using NVivo 12 were undertaken by one author and checked by two other authors. Nineteen studies published between 2002 and 2022. The four randomised controlled studies and five qualitative studies were of moderate to good methodological quality. The 10 quasi-experimental studies were of weak to moderate quality. Fifteen virtual reality-based educational programmes had a positive influence on formal and informal caregivers, including improving caregivers' perceptions changing attitudes towards people with dementia, while the nursing competence of formal caregivers did not improve in short term. Educational programmes that covered dementia-related information and care strategies better improved the knowledge level of dementia formal and informal caregivers. The qualitative and quantitative studies of moderate to good quality included in this study support the idea that virtual reality-based dementia educational programmes may be a safe and effective way and have potential benefits for improving knowledge, perceptions, attitudes and nursing competence. This scoping review will provide an emerging teaching model for formal and informal caregivers of people with dementia and help them better understand the types and the influence of virtual reality-based dementia educational programmes. PRISMA-ScR. Not required as this review in accordance with the aim to map existing literature from the dementia formal and informal caregivers' perspective.

An Assessment of Physical Activity and Risk Factors in People Living with Dementia: Findings from a Cross-Sectional Study in a Long-Term Care Facility in Vietnam.

People living with dementia (PLWD) may experience substantial cognitive decline as the disease progresses, which interferes with their daily activities. This study aimed to assess physical activity (PA) performance and care dependency (CD) and identify factors related to PA among PLWD. We conducted a cross-sectional study in 63 PLWD from National Geriatrics Hospital, Vietnam, from 2021 to 2023. We used the Mini Nutritional Assessment (MNA), International Physical Activity Questionnaire (IPAQ), and Care Dependency Scale (CDS) to assess the nutritional status and the levels of PA and CD, respectively. We used the Mann-Whitney test to compare the differences in the PA types and CD levels between dementia levels and a multivariable logistics regression model to analyze factors related to PA. More than half of the subjects had mild dementia. In total, 35% of the PLWD had a low level of PA, and 46.3% were completely independent of care. The mean score in each CDS aspect of the subjects with moderate/severe dementia was statistically significantly lower than that of those with mild dementia (p ≤ 0.05). Lower dependency (OR = 0.9; 95% CI = 0.88-0.99) and malnutrition (OR = 15.4; 95% CI = 1.18-20.21) were associated with insufficient PA in the PLWD. Formal caregivers and healthcare workers should encourage PLWD to perform physical activities at any level and personalize the development of tailored and nutritional care strategies for each individual.

Care-receivers with physical disabilities’ perceptions on having humanoid assistive robots as assistants: a qualitative study

BackgroundPeople with physical disabilities due to disease or injury face barriers to their daily activities and participation in society. Many depend on formal or informal caregivers for assistance to live independently. However, future healthcare challenges due to demographic changes threaten access to home care and assistants. Assistive technologies, such as robots for physical assistance, can support the independence and autonomy of people with physical disabilities. This study explore Norwegian care-receivers’ perceptions of using robot assistance in their homes, including preferences for tasks acceptable or unacceptable for robot assistance and the underlying reasons.MethodPurposive sampling was employed to recruit 18 participants, aged between 18 and 77 years, with differences in physical function including diagnoses such as stroke, spinal cord injury, amputations, and muscular dystrophy. Qualitative data were gathered through four focus group interviews wherein participants watched videos featuring a humanoid assistive robot, EVEr3. The collected data underwent analysis using reflexive thematic analysis.ResultsThree themes with associated sub-themes were constructed: (a) How a robot could assist in daily life, (b) The robot’s appearance and functionality, and (c) Concerns about having a robot as an assistant. The participants welcomed the idea of a future robotic assistant in areas that may contribute to an increased feeling of independence and autonomy.ConclusionA robot assisting in activities of daily living would need to be individually customized to meet the needs of each user in terms of which tasks to assist with, how to assist in these defined tasks, and how it is controlled.

Exploring the associations between competence in dementia care and work attitudes among formal caregivers in nursing homes.

Based on the two-factor model of caregiving appraisals, this study aims to (1) investigate the relationships between competence in dementia care and job satisfaction (work attitudes in positive aspect) and turnover intention (work attitudes in negative aspect) among formal caregivers in nursing homes, and (2) examine the mediating roles of positive aspects of caregiving (caregiving appraisals in positive aspect) and caregiving burden (caregiving appraisals in negative aspect) in the above associations. A cross-sectional design was used. Structural equation modelling was employed to test the proposed model. STROBE checklist guides the reporting of this study. Using the multistage cluster sampling method, 407 formal caregivers were selected from 43 nursing homes across 7 districts/counties in China. The proposed model shows a good model fit. Competence in dementia care shows significant positive associations with increased job satisfaction and decreased turnover intention among formal caregivers in nursing homes. Caregiving burden and positive aspects of caregiving mediate the relationships between competence in dementia care and both job satisfaction and turnover intention. Furthermore, the relationship between positive aspects of caregiving and job satisfaction is stronger than that with turnover intention, but the relationship between caregiving burden and turnover intention is not stronger than that with job satisfaction. The results demonstrate that the two-factor model of caregiving appraisals effectively elucidates the associations and underlying mechanisms between competence in dementia care and formal caregivers' work attitudes. Specifically, two crucial conclusions are drawn: (1) competence in dementia care is associated with higher levels of job satisfaction and lower levels of turnover intention among formal caregivers in nursing homes; (2) caregiving burden and positive aspects of caregiving serve as parallel mediators in these associations. Policymakers and nursing homes managers should implement a series of measures aimed at formal caregivers in nursing home. Specifically, allocating more resources to enhance the competence in dementia care of formal caregivers is crucial, given its significant association with elevated job satisfaction and reduced turnover intention. Besides, positive and negative caregiving appraisals emerge as proximal factors influencing work attitudes of formal caregivers. Therefore, intervention projects focused on formal caregivers in nursing home should target enhancing positive experiences and alleviating caregiving burden. No patient or public contribution.

Challenges to conducting research on oral health with older adults living in long-term care facilities

BackgroundThe challenges to conducting oral health studies involving older people in long-term care facilities (LTCFs) must be debated.ObjectiveThis study aimed to investigate researchers’ perceptions and experiences while conducting an epidemiological survey on oral health among older individuals residing in LTCFs.MethodsA qualitative study was conducted involving six researchers who utilized field diaries to record their impressions during data collection through interviews (older individuals (or their proxies), caregivers, and LTCF coordinators) and oral examinations of the older people participants. Additionally, researchers responded to open-ended questions about their experiences. The collected material was subjected to content analysis by two researchers.ResultsThe themes that emerged from the analysis were institutional context, aspects affecting the operationalization of the study, and data collection oriented by the clinical-functional profile of the older people. According to the researchers’ perceptions, LTCF coordinators demonstrated concern for the study’s benefits for older adults and the preservation of institutional routines during the research process. Caregivers emerged as vital sources of information, guiding researchers in navigating the challenges posed by the physical and mental complexities of the older people participants, necessitating empathy, sensitivity, and attentive listening from the researchers. The organization of materials and a streamlined data collection process proved essential for optimizing time efficiency and reducing stress for participants and researchers.ConclusionThe researchers recognized the important role played by LTCF coordinators and formal caregivers, underscoring the significance of empathetic methodologies and streamlined data collection processes in mitigating the challenges inherent to research conducted within LTCFs.

The moderating effect of care time on care-related characteristics and caregiver burden: differences between formal and informal caregivers of dependent older adults.

This study examined differences in care burden between formal and informal caregivers of dependent older adults according to care-related characteristics, and whether care time had a moderating effect on the relationship between care-related characteristics and caregiver burden. Participants were formal (n = 520) and informal caregivers (n = 142) of dependent older adults in South Korea. Caregiver burden was measured using the Korean version of the Zarit Burden Interview. Data were analyzed using hierarchical regression with interaction terms and moderation analysis. Caregiver burden was higher for informal caregivers than formal caregivers. Factors associated with an increased risk of caregiver burden in both formal and informal caregiver of dependent older adults were caregivers' stress, physical strain, and care time. Care time significantly moderated the relationship between care attitude and care burden only among formal caregivers. When formal caregivers' care time was 1 standard deviation higher than the mean value, care attitude was significantly associated with care burden (bsimple = -0.903, SE = 0.106, p < 0.001). The caregiver burden of dependent older adults can be reduced by providing interventions to attenuate the effects of modifiable risk factors that were identified in this study. And to weaken the relationship between care attitude and burden of formal caregivers who have long care hours, a positive social atmosphere for care should be provided in addition to education. To realize sustainable care, policy considerations that reflect the results of this study will help solve the problem of formal and informal caregiver burden of dependent older adults.

Low-Fidelity Prototype of a Sensor-Dependent Interaction Platform: Formative Evaluation With Informal Caregivers of Older Adults With Cognitive Impairment.

Unobtrusive sensing technologies developed for monitoring deviant behaviors in older adult care require integration with an interaction platform to facilitate the flow of information between older adults and their caregivers. However, the continuous monitoring capabilities generate a considerable amount of data that must be interpreted, filtered, and personalized before being communicated to the informal caregivers based on their specific care needs and requirements. For the effective implementation of unobtrusive sensing solutions (USSs) in the care of older adults with cognitive impairment, we aimed to explore the expectations and preconditions regarding the implementation of USSs from the perspective of informal caregivers. Subsequently, we designed and evaluated a low-fidelity prototype of an interaction platform for its conceptual workflow and usability, incorporating persuasive system design features based on the needs and requirements of informal caregivers. Overall, 6 informal caregivers of older adults with cognitive impairment living alone participated in this qualitative interview study. We explored the expectation and preconditions regarding implementation through open-ended questions and conducted a formative evaluation (usability study with a think-aloud approach) to evaluate the conceptual workflow and used persuasive system design features in the interaction platform. Overall, a combination of inductive and thematic analyses was used to analyze the interviews. The results of this study present both positive and negative outcome expectations regarding the implementation of USSs, highlighting benefits such as objective decision-making and peace of mind and concerns about information overload and the potential substitution of human contact. Strategic information communication agreements between informal and formal caregivers were deemed crucial for the successful implementation of USSs in care. Overall, informal caregivers had a positive experience with the low-fidelity prototype of the interaction platform, particularly valuing the personalization feature. In conclusion, to achieve successful implementation, a holistic design approach is necessary, and equal consideration should be given to the personalization-privacy paradox to balance users' needs and privacy.

Preventive Home Visits Among Frail Community-Dwelling Older Adults. The Added Value of Follow-Up Telephone Calls

ABSTRACT People in need of care and support do not always find appropriate services. This paper aims to explore the content and added value of monthly follow-up telephone calls after preventive home visits. We used both monitoring data and qualitative semi-structured interviews (with older adults, formal and informal caregivers). Results indicate that a majority of older adults (N = 95) received a regular follow-up of four telephone calls. Social connection and involvement were mentioned by all three groups as positive aspects of the program. Although time-consuming, this paper draws attention to the added value of follow-up telephone calls after preventive home visits.

Barriers and facilitators to health technology adoption by older adults with chronic diseases: an integrative systematic review

BackgroundIn recent years, healthcare systems have progressively adopted several technologies enhancing access to healthcare for older adults and support the delivery of efficient and effective care for this specific population. These technologies include both assistive technologies designed to maintain or improve the independence, social participation and functionality of older people at home, as well as health information technology developed to manage long-term conditions. Examples of such technologies include telehealth, wearable devices and mobile health. However, despite the great promise that health technology holds for promoting independent living among older people, its actual implementation remains challenging.MethodsThis study aimed to conduct an integrative systematic review of the research evidence on the factors that facilitate or hinder the adoption of different types of technology by older individuals with chronic diseases. For this purpose, four electronic databases (PsycArticles, Scopus, Web of Science and PubMed) were queried to search for indexed published studies. The methodological quality of the selected papers has been assessed using the Mixed Methods Appraisal Tool (MMAT).ResultsTwenty-nine articles were selected, including 6.213 adults aged 60 or older. The studies have been synthesised considering the types of technological interventions and chronic diseases, as well as the main barriers and facilitators in technology acceptance. The results revealed that the majority of the selected articles focused on comorbid conditions and the utilisation of telemedicine tools. With regard to hindering and facilitating factors, five main domains were identified: demographic and socioeconomic, health-related, dispositional, technology-related and social factors.ConclusionThe study results have practical implications not only for technology developers but also for all the social actors involved in the design and implementation of healthcare technologies, including formal and informal caregivers and policy stakeholders. These actors could use this work to enhance their understanding of the utilisation of technology by the ageing population. This review emphasises the factors that facilitate technology adoption and identifies barriers that impede it, with the ultimate goal of promoting health and independent living.

Is the Electroconvulsive Therapy Video on YouTube Supportive Information for Patients and Their Primary Caregivers?

Electroconvulsive therapy (ECT) is a significant contemporary medical treatment modality for various mental disorders that have not responded to other treatments. YouTube is a valuable place to get health-related educational content that can have a big impact on patients' and their primary caregivers' behaviors and decisions. The aim of the study is to analyze the content of YouTube videos related to ECT to investigate the quality and reliability of videos as supportive information for patients and their primary caregivers. A total of 250 videos related to ECT that are available on YouTube were analyzed. The Global Quality Scale and the modified DISCERN tool were used to assess the quality and reliability of the videos. Details of the content of the video, caregiver appearance, methods of information presentation, source of the video, and video parameters were analyzed as well. The analysis revealed that the median total score of Global Quality Scale was 3 (interquartile range, 2; min-max, 1-5), which means the video quality was medium. The median total score of the modified DISCERN tool was 3 (interquartile range, 1; min-max, 0-5), which means the videos were highly reliable. Most of the video sources in the included videos were educational (41.2%, n = 103) from formal caregivers, and there was no significant difference between Global Quality Scale scores, video parameters, and modified DISCERN scores. YouTube is considered a supportive source of information related to ECT but needs more encouragement from formal caregivers to disseminate high-quality and reliable healthcare content on YouTube platforms to ensure access to accurate information.