Caregiver Understanding Research Articles

Support for Family Caregivers: Implications of Work Strain and Its Intersections With Formal and Informal Help.

This study seeks to assess whether and to what extent caregiver work strain is ameliorated by the presence of additional family caregivers and formal service use. Building on the stress process model and stress-appraisal moderation, we examine how formal and informal support varies in associations with caregiver distress for men and women. This study utilizes data provided by the National Study of Caregiving, which is linked with care-recipient information from the National Health and Aging Trends Study. Using panel methods for the pooled waves, we estimated caregiver outcomes of emotional well-being on the intersection of experiences of work strain and (a) the number of additional caregivers and (b) utilization of 6 different types of formal support. Additional informal caregivers for each respective care recipient are associated with lower levels of distress, although utilization of formal services (paid help and Medicaid funding) is positively associated with caregiver distress. Informal support can offset the impact of work strain, but interactions are only evident for women caregivers. The findings suggest that informal support, exemplified by the number of additional caregivers, corresponds with reduced emotional distress among employed caregivers and can mitigate the negative impacts of work strain. However, positive associations between formal support and male and female caregiver distress suggest that the context of formal services may offer limited or untimely support. This study is expected to broaden our understanding of informal caregiving in later life and provide practical implications on how to sustain informal care.

EXPLORING ARTS-BASED METHODS IN UNPAID CAREGIVING CONTEXTS: A SCOPING REVIEW

Introduction:Unpaid caregiving plays a crucial role in supporting older adults, requiring innovative approaches to understand and enhance caregivers' experiences. Research Objectives: As a response, this scoping review investigates the application of arts-based methods in understanding the caregiving experience, as well as the advantages and limitations of these methods in providing care to diverse populations. Methodology: Building on Arksey and O’Malley's framework, our methodology draws from the Joanna Briggs Institute approach. Eligibility criteria encompassed peer-reviewed publications in English from 2007 to 2022, focusing on unpaid caregivers, arts-based methods, and caregiving experiences. Six comprehensive databases were queried, with the initial searches yielding 761 articles. Full text screening of 66 papers resulted in 19 papers for inclusion in the scoping review. Results: Analysis of the literature revealed the multifaceted applications of arts-based methods in understanding and supporting unpaid caregivers. These encompassed a wide range of creative techniques, such as visual arts, photo elicitation, storytelling, and performance – which provided insights into the emotional, psychological, and social dimensions of caregiving. Findings highlighted the potential for arts-based methods to enhance caregiver well-being, foster self-reflection and self-care, and promote dialogue. Nonetheless, there were notable gaps. Racial and ethnic diversity was often neglected in the studies (addressed in 3 of 19), underscoring the necessity for tailored interventions and methodological considerations for diverse populations. Importantly, dementia caregiving received substantial attention (12 of 19). Final Considerations: This scoping review highlights the growing interest in integrating arts-based methods into caregiving research and interventions amongst qualitative and mixed methods approaches. By mapping out the landscape of existing literature, this review underscores the need for further exploration and methodological refinement to harness the full potential of creative techniques in advancing our understanding of unpaid caregivers' lived experiences. Arts-based approaches hold promise in providing a nuanced and holistic perspective on unpaid caregiving experiences.

Caregiver Knowledge, Attitude, and Behavior toward Care of Children with Cerebral Palsy: A Saudi Arabian Perspective.

The care of children with cerebral palsy (CP) requires a complex system of care that is not only dependent on health care resources, but is also strongly influenced by social and cultural attributes. Hence, it is important to explore the understanding and practices of caregivers within a regional perspective. This study was conducted to investigate the knowledge, attitude, and behavior (KAB) of parents with children diagnosed with CP in Saudi Arabia. A cross sectional survey was conducted on the caregivers of children with CP admitted for inpatient rehabilitation between October 2023 to January 2024. A total of 216 caregivers participated in this survey. About 82.9% of caregivers were the mothers of CP children, half (50.5%) were ≤36 years old, 53.7% were highly educated, and 89.2% lived in urban areas. More than half of the participants (57.7%) owned their homes. Regarding children, spastic quadriplegia was the most common type (46.3% of cases). Overall, the participants recorded good values for all variables for KAB. The mean value for attitude was higher (2.67 ± 0.20) when compared to behavior (2.49 ± 0.36) and knowledge (2.46 ± 0.25). Participants who had children with spastic quadriplegia CP reported lower behavior scores than their peers. Strategies with a special emphasis on improving the behaviors of caregivers for children with quadriplegia need to be adapted. Similarly, the living situations of families need to be taken into consideration given its significant association with the attitude of caregivers. A considerable lack of knowledge in handling emergency situations by caregivers signifies a gap in care, which could have potentially life-threatening consequences.

L’électroconvulsivothérapie, toute une (psycho)éducation !

BackgroundElectroconvulsive therapy (ECT) remains an essential, yet often stigmatized, treatment in psychiatry. Addressing this issue, our study introduces and evaluates a psychoeducational intervention aimed at demystifying ECT for patients and their caregivers, using the QuAKE (Questionnaire on Attitudes and Knowledge of ECT). MethodsThis psychoeducational approach was designed for individuals indicated for ECT and their caregivers. The session's effectiveness was gauged by comparing pre- and post-intervention QuAKE scores. Statistical significance was determined using paired Student t-test. ResultsThe study included 20 participants, with caregivers constituting 90% of the sample. The intervention led to a statistically significant increase in knowledge (mean increase of 7.55 points, p<0.001) and a notable decrease in stigmatizing attitudes (mean decrease of 9 points, p<0.001) towards ECT, as measured by the QuAKE scales. DiscussionThe significant improvements in both knowledge and attitudes underline the potential benefits of incorporating psychoeducational interventions into ECT treatment protocols. Future research should further explore the role of such interventions in the broader treatment pathway, enhancing patient and caregiver understanding and acceptance of ECT.

‘Let him die in peace’: understanding caregiver’s refusal of medical oxygen treatment for children in Nigeria

IntroductionEfforts to improve oxygen access have focused mainly on the supply side, but it is important to understand demand barriers, such as oxygen refusal among caregivers. We therefore aimed to...

Bridging the gap: a multidisciplinary approach to integrated care solutions for the aging population

AbstractThis study addresses the challenges of the ageing population, focusing on enhancing the life of caregivers and the elderly. It proposes a multifaceted solution that allows dependents to live close to their carers, enabling oversight without a need for constant presence. The paper employs empirical studies to ensure a deep understanding of caregiving, capturing the breadth and depth of challenges. Presenting a novel design solution, Hygge, combines physical and system design with technology integration. This prioritises accessibility, cost, maintenance, and adaptability for diverse needs.

Practices of diarrhoea disease prevention measures among caregivers in Nyalenda, Kisumu County

This study aims to assess the practice of diarrhoea disease prevention measures among caregivers to enhance the effectiveness of prevention strategies. Diarrhoea disease poses a significant health risk, particularly among children, and caregivers play a crucial role in preventing its occurrence. However, the actual practice of diarrhoea disease prevention measures among caregivers is not well understood. Understanding the current practices and identifying areas for improvement can inform targeted interventions and educational programs to enhance the effectiveness of prevention strategies. This study employed a quasi-experimental design with mixed methods analysis. A sample of 302 households with caregivers of children aged 6-24 months. In-depth interviews and structured questionnaires were employed for data collection entered into SPSS. Descriptive analysis, multivariate logistic regression, independent samples t-test, chi-square test, and qualitative thematic analysis were employed for data analysis. The findings revealed the level of adherence to preventive measures among caregivers and identified specific areas where improvements are needed. The study contributes to the understanding of caregivers’ practices in preventing diarrhoea diseases and highlights the necessity for targeted interventions to improve adherence to preventive measures. By identifying specific areas for improvement, healthcare providers and policymakers can design educational programs and interventions that address the gaps in practice, ultimately reducing the incidence of diarrhoea diseases among children. The study recommends incorporating visual charts as an intervention strategy to improve caregivers’ practice of diarrhoea disease prevention measures. Visual charts can effectively enhance adherence to preventive measures among caregivers, ultimately reducing the prevalence of diarrhoea in children.

Caregiver perspectives of scoliosis surgery for children with cerebral palsy: a qualitative study

Purpose To explore the perspectives of primary caregivers of children with cerebral palsy (CP) who had spinal surgery for scoliosis. Materials and Methods A qualitative study was conducted using semi-structured interviews and guided by qualitative description methodology. Participants were caregivers of children with CP aged 5–18, who had undergone spinal surgery for scoliosis in Australia. The research team included a parent with lived experience. Results Fourteen participants (8 biological mothers), aged 40–49 years, completed online semi-structured interviews. Four themes were identified emerged. Life with a child with CP underpinned all experiences which were founded on familiarity with their child, medical procedures, and hospitalisation. Three subthemes were parents are the experts in knowing their child, children are vulnerable, and impact on caregivers. Theme 2 involved the significance of decision making to proceed with surgery. Theme 3 underscored a need to be prepared for the surgical journey and, in Theme 4, participants spoke of needing to expect the unexpected. Conclusion The findings highlight the importance of understanding caregiver experiences and can help inform health professionals and other families in the decision-making process, preparing for and navigating spinal surgery.

"Tremendous burdens often unveil enormous gifts": The experiences of South African caregivers implementing speech and language teletherapy for children with cerebral palsy during COVID-19.

In accordance with South Africa's restrictions to mitigate the spread of COVID-19, some speech-language pathologists (SLPs) attempted to engage in novice teletherapy regimes to ensure continuity of care for children with cerebral palsy (CP). This study aimed to explore the experiences of caregivers of children with CP implementing SLP teletherapy during COVID-19 in South Africa. The goal was to shed light on how these families can be better supported and how teletherapy practices can be adjusted for this population. This study employed a qualitative phenomenological research design using in-person and virtual semi-structured interviews with 18 purposively sampled participants with children with CP who received speech and language teletherapy during COVID-19. The data was evaluated using an inductive thematic analysis approach whereby themes elicited from the caregivers' narratives were analyzed. Interviews (n = 18) unveiled the significant understanding caregivers gained by becoming integral and active stakeholders in the provision of teletherapy. Caregivers were able to meaningfully communicate and bond with their children with CP. However, caregivers also assumed the burden that teletherapy placed on them, as they had to renegotiate their role during the pandemic in order to provide routine teletherapy. Findings indicated the need for person-centered SLP teletherapy interventions that utilize contextually and culturally responsive techniques and resources.

Research on the Culture and Awareness of Autism

Autism is a form of disorder having high prevalent rate in more than 80 nations globally, and there have been few studies that examine this disorder from a cultural perspective. In this literature review, an overview of autism’s awareness and culture, citing relevant instances from both advanced and less advanced nations is provided. From the result, it was discovered that ASD are expressed in diverse ways based on various cultures. The level of understanding and perception of caregivers about ASD are influenced by demographic factors such as social economic status, gender, and educational level. Notwithstanding, these factors appear to impact residents of advanced nations since they not only already have a system that is stable and complete but also have legislation for ASD. Contrastingly, individuals residing in developing nations that are witnessing resource imbalance, likewise encounter relative lack of ASD perception, screening and diagnosis. To provide relatively affordable and accessible service to children suffering from ASD across the globe, it is necessary to intensify effort in the future.

The perception of dignity in the hospitalized patient: a meta-synthesis - ensure consistency with authors' details e.g. name, affiliation, city and country Minor comments below.

Dignity is a value inherent to all human beings, guaranteed to every individual from birth, and influenced by culture and society. It is protected by various laws and declarations, and represents one of the fundamental human rights. Preserving human dignity is an essential aspect of nursing practice and a central element of care. Dignity is a highly subjective and personal concept; there may be variations in the way that patients perceive it and in the ways that nurses can guarantee it. A systematic review of the qualitative literature was conducted to obtain a comprehensive understanding of adult patients' perceptions of dignity in a hospital setting. This review adhered to the PRISMA Statement for reporting systematic reviews, and the results were reported in accordance with the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidelines. Major databases (PubMed, CINAHL, Scopus, and PsycINFO) were consulted and resulted in the inclusion of 21 studies. Methodological quality was assessed using the Critical Appraisal Skills Program (CASP) Checklist for Qualitative Studies. Six main themes emerged from the data analysis: (1) The concept of dignity and its various dimensions; (2) The significance of maintaining one's own privacy and confidentiality; (3) The hospital environment's influence on patients' dignity; (4) Healthcare professionals' characteristics and behaviours that affect dignity; (5) The role of communication and the relationship with healthcare providers; and (6) The patient's ability to make choices and be involved actively in their care. These findings underscore the importance of understanding caregivers' perspectives on dignity to ensure that they provide respectful and dignified care and treatment that prioritizes the patient's mental and physical needs.

Examining Parent Mood, Feeding Context, and Feeding Goals as Predictors of Feeding Practices Used by Parents of Preschool Children With Avid Eating Behavior: Protocol for an Ecological Momentary Assessment Study.

An avid eating behavior profile is characterized by a greater interest in food and a tendency to overeat in response to negative emotions. Parents use specific strategies to manage feeding interactions with children with avid eating behavior. While momentary and contextual factors, such as parental mood, have been found to influence parental feeding practices, there is a lack of research examining parents' daily experiences of feeding children with avid eating behavior. Examining this is important because parental feeding practices are key levers in tailored interventions to support children's healthy eating behavior. We aim to describe the ecological momentary assessment methods and procedures used in the APPETItE (Appetite in Preschoolers: Producing Evidence for Tailoring Interventions Effectively) project, which aims to examine how variation in parental mood, feeding goals, and the context of eating occasions affect the parental feeding practices used to manage feeding interactions with children with an avid eating behavior profile. Participants are primary caregivers from the APPETItE cohort who have a preschool-age child (aged 3-5 years) with an avid eating behavior profile. Caregivers complete a 10-day ecological momentary assessment period using signal- and event-contingent surveys to examine (1) mood and stress, (2) parental feeding goals, and (3) contextual factors as predictors of parental feeding practices. Recruitment and data collection began in October 2023 and is expected to be completed by spring 2024. The data have a 3-level structure: repeated measurements (level 1) nested within days (level 2) nested within an individual (level 3). Thus, lag-dependent models will be conducted to test the main hypotheses. The findings from this study will provide an understanding of caregivers' daily experiences of feeding preschool children with avid eating behavior, who are at greater risk for the development of obesity. Understanding the predictors of feeding practices at the moment they occur, and across various contexts, will inform the development of tailored resources to support caregivers in managing children's avid eating behavior. DERR1-10.2196/55193.

Sensitive responsiveness and multiple caregiving networks among Mbendjele BaYaka hunter-gatherers: Potential implications for psychological development and well-being.

Attachment theory postulates that there is a particular style of caregiving that, because of its interaction with our evolved psychology, is most likely to result in healthy psychological development. Attachment research has been criticized because most studies have been conducted with Western populations. Critics argue this has (a) overemphasized the importance of sensitive responsive caregiving and (b) limited our understanding of multiple nonmaternal caregiving (allomothering). Here, we analyze the extent of sensitive responsiveness and structural properties of allomothering networks among Mbendjele hunter-gatherers who reside in the Republic of Congo. Humans lived as hunter-gatherers for the majority of our evolutionary history, thus studying contemporary hunter-gatherers can offer insight into the caregiving children may be psychologically adapted to. Based on 12-hr focal follows of 18 children (0-4 years old; 10 male), we constructed caregiving networks across the domains of responding to crying, physical contact, interactive care, and proximity. Crying was virtually always responded to rapidly via comforting and never via scolding. Children received physical contact and care for the majority of the day. Allomothering accounted for 40%-50% of caregiving in each domain. While allomaternal networks were large, they were highly concentrated-the majority of a child's allocare was provided by just a few caregivers. Due to high caregiver:child ratios, "sharing" of caregivers was limited-a child typically had several allomothers who directed a majority of their allomaternal effort to him/her. These findings add to our understanding of the level and sources of sensitive responsive caregiving that children may be evolutionarily primed to expect. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

The use of ecological momentary assessment for family caregivers of adults with chronic conditions: A systematic review.

Ecological momentary assessment (EMA) as a real-time data collection method can provide insight into the daily experiences of family caregivers. This systematic review aimed to synthesize studies involving EMA completed by family caregivers of adults with chronic conditions. A systematic search was conducted within six databases for articles published from the inception of the database through September 2023. We extracted the characteristics of the included studies and data on EMA-specific methods to determine the quality of the included studies. A total of 12 studies involving EMA completed by family caregivers of adults with chronic conditions were identified, with almost all studies focused on caregivers of persons with Alzheimer's or dementia-related conditions. The average compliance rate across the included studies was 75%, below the recommended rate. In addition, most of the included studies did not collect the family caregivers' daily activities and care contexts in their responses (i.e., affect, stress, well-being, care demand, and fatigue) to the EMA prompts. This review showed that using EMA to collect information on family caregivers of adults with chronic health conditions appeared feasible and acceptable. However, the methodology or design of using EMA to collect caregiver information in this population is still preliminary. The limited number of existing studies that have used EMA to capture the daily experiences of family caregivers does not provide key information that could improve understanding of caregivers' emotional experiences and well-being in real-life situations. We identified gaps in the literature that warrant additional EMA studies for this population.

Developing a conceptual model for understanding caregiving experience and their impacts on quality of life for Chinese breast cancer family caregivers: A qualitative study.

The purpose of this study was to understand the caregiving experiences of breast cancer family caregivers and explore the profound impacts of those experiences on their quality of life. A qualitative research method was used. We extended invitations to 23 family caregivers of outpatients and inpatients receiving breast surgery and oncology treatments in Taiyuan, China, to participate in semi-structured interviews. The interviews were audio-recorded and transcribed verbatim. Thematic analysis was employed to analyse the interview data. Four themes and associated categories were identified: (1) changes in family dynamics, (2) the socio-medical context, (3) interactions between family and society, (4) self-efficacy and nine subthemes and their related categories, where virtually all participants expressed future uncertainty, emotional contagion, and personal challenges, and self-efficacy had a moderating influence on the first three themes. This study did not involve direct participation of patients or the public. However, their experiences and perspectives on caregiving were indirectly reflected through the insights provided by the family caregivers who participated in the interviews. Their valuable input contributed to a deeper understanding of the caregiving experience and its impact on the quality of life for Chinese breast cancer family caregivers.

Exploring Psychological Distress, Burden of Care and Emotional Intelligence as Correlates of Psychological Well-being in Family and Non-family Caregivers of Individuals Living with Cannabis-induced Psychotic Disorder

Caring for individuals living with cannabis-induced psychotic disorder poses unique challenges that significantly impact caregivers’ psychological well-being. This study delved into this complex caregiving landscape, exploring how psychological distress, the burden of care, and emotional intelligence collectively influence caregivers’ psychological well-being. The study was conducted at the Federal Neuropsychiatric Hospital, Yaba, Lagos Nigeria. The research adopted purposive sampling, involving one hundred (100) participants encompassing both family and non-family caregivers. Participants completed four key instruments: The General Health Questionnaire (GHQ) – 12, Zarit Burden Interview (ZBI), Trait Emotional Intelligence Questionnaire (TEIQue), and Psychological Well-being Scale (PWB). Descriptive statistics provided mean and standard deviation values for psychological distress, burden of care, emotional intelligence, and psychological well-being, with the reliability of each scale assessed. Hypothesis testing included t-tests, simple linear regression, Pearson correlation, and multiple linear regression, yielding significant findings. Notably, family caregivers did not bear a significantly higher burden of care compared to their non-family counterparts (t = -.108, p&lt;.05). Furthermore, female caregivers exhibited superior psychological well-being in contrast to male caregivers (t = -4.594, p&lt;.05). Emotional intelligence significantly impacted psychological well-being (R square =.262), and a positive relationship existed between psychological distress and well-being (r = .596, p&lt;.05). Lastly, psychological distress, emotional intelligence, and the burden of care collectively shaped psychological well-being (R square =.526). This research unravels the intricate dynamics faced by caregivers of individuals with cannabis-induced psychotic disorder, highlighting the pivotal roles of emotional intelligence and psychological distress. These insights deepen understanding of caregivers’ experiences and provide a foundation for tailored interventions to bolster their overall well-being. Keywords: Caregivers, Psychological Distress, Burden of Care, Emotional Intelligence, Psychological Well-being, Cannabis-Induced Psychotic Disorder

Perceptions and experiences of first mobility aid provision for young children with cerebral palsy in the United States: a mixed-methods study

Purpose The purpose of this study was to establish and understand the provision process and impacts of first mobility aids for children with cerebral palsy (CP) in the United States – specifically orthoses, walkers and gait-trainers. Methods We performed a mixed-methods study including surveys and semi-structured interviews of caregivers of young children with CP (n = 10) and clinicians who work with young children with CP (n = 29). We used content analysis for the surveys and inductive coding for the interviews. Results Four themes emerged: (1) first mobility aids have mixed impacts and use patterns, (2) there is varied caregiver education and understanding about mobility aids, (3) clinician knowledge, consistency and connection impact care and (4) numerous access barriers exist for families, and there are still opportunities for improvement across all domains. Conclusions This research provides insights into the lived experiences of clinicians and caregivers of young children with CP regarding the prescription, provision, use and impact of first mobility aids, specifically ankle foot orthoses and walkers/gait trainers. This study not only provides researchers and clinicians with an understanding of the current status of the prescription and provision process in the United States, but also offers suggestions for improvements of the process and mobility aids themselves. These results have implications for future research, mobility aid, design and the provision process of first mobility aids.

Health literacy interventions for informal caregivers: systematic review

AimThe aim of the systematic review was to identify conceptual models and interventions designed to improve health literacy in caregivers of adults with a chronic disease/disability.MethodsMEDLINE, CINAHL, PsycINFO and Embase...

Who Cares? Unpaid Caregiving by Sexual Identity, Gender, and Partnership Status Among U.S. Adults

Recent scholarship indicates that sexual minority adults have higher caregiving rates than heterosexuals and that women are more likely to be caregivers than men. However, little research has addressed how gender and sexuality intersect in shaping caregiving status. This study uses data from the Behavioral Risk Factor Surveillance System and aggregates a probability-based sample of adults living in 36 U.S. states between 2015 and 2021. We examine who provides care among adult heterosexual, lesbian, gay, and bisexual men and women. Results reveal that women are more likely to be caregivers than men, but only among heterosexuals. We find little variation in caregiving by sexuality among women, but bisexual men are more likely than heterosexual men to be caregivers; the latter result appears to be driven by unpartnered, bisexual men. Lastly, we contextualize caregivers’ experiences and reveal selected descriptive differences in patterns of care recipient–caregiver relationships across gender and sexual identity groups. Our findings advance understanding of caregiving and changing family ties in an era of population aging and increasing diversity in sexual identities.

The personal epistemology of parents predicts the development of scientific reasoning in children aged 6-10 years.

The influence of the epistemological beliefs of parents on the development of comprehensive scientific reasoning abilities was investigated in a five-wave longitudinal study from kindergarten to elementary school. The 161 German 5-10-year-olds (89 girls, 72 boys) were assessed yearly on their scientific reasoning abilities using comprehensive measures for experimentation and data-interpretation skills, as well as understanding of the nature of science. The children were also tested on their language abilities and intelligence. Their parents completed a sociodemographics questionnaire and answered ten questions about their epistemological beliefs regarding (1) the interpretive nature of science, (2) the tentative nature of knowledge, and (3) the role of scientific framework theories. The personal epistemology of the parents significantly predicted the scientific reasoning development of their children regardless of the parents' education level and the children's general cognitive abilities. However, the effect of the epistemology of parents on their children's scientific reasoning was limited to the intercepts, suggesting that the epistemic understanding of parents affects how scientific reasoning develops in their children, but not the development speed. Although parental epistemology exerts substantial effects on scientific reasoning of their children, it did not affect their reading ability, suggesting an involvement of science-specific mechanisms rather than generalized family-based influences. These findings highlight the importance of family as a variable in the development of scientific reasoning, which is an area lacking in research, and it suggests that early interventions targeted at the epistemic understanding of caregivers can provide useful ways for promoting the reasoning of children. RESEARCH HIGHLIGHTS: A five-year longitudinal study shows significant development of scientific reasoning from kindergarten to elementary school. Caregivers' personal epistemology predicted scientific reasoning development-independent of children's general cognitive abilities and caregivers' level of education. The effect was most-pronounced for caregivers' understanding that social framework theories determine which aspects of science are accepted and how they are conducted. Caregivers' personal epistemology did not predict children's reading abilities, suggesting that the effect of the caregivers' epistemology on children's scientific reasoning is domain-specific.