Caregiving Activities Research Articles

Parental presence, participation, and engagement in paediatric hospital care: A conceptual delineation.

To delineate between the concepts of parental presence, participation, and engagement in paediatric hospital care. The concepts' uses in the literature were analysed to determine attributes, influences, and relationships. Delineations of each concept are established and conceptual definitions are proposed following Morses' methods. MEDLINE (PubMed); CINAHL, PsycINFO, Sociology Source Ultimate (EBSCOhost); Embase, Scopus (Elsevier); Google Scholar. Search dates October 2021, February 2023. Multinational publications dated 1991-2023 revealed these concepts represent a range of parental behaviours, beliefs, and actions, which are not always perceptible to nurses, but which are important in family-integrated care delivery. Parental presence is the state of a parent being physically and/or emotionally with their child. Parental participation reflects parents' performing caregiving activities with or without nurses. Parental engagement is a parents' state of emotional involvement in their child's health and the ways they act on their child's behalf. These concepts' manifestations are important to parental role attainment but may be inadequately understood and considered by healthcare providers. Nurses have influence over parents' parental presence, participation, and engagement in their child's care but need support from healthcare institutions to ensure equitable family-integrated care delivery. Problem: Lack of clear definition among these concepts results in incomplete and at times inequitable family-integrated care delivery. Parental presence is an antecedent to parental participation, and parental presence and participation are elements of parental engagement. The concepts interact to influence one another. Hospitalized children, their families, nurses, and researchers will benefit through a better understanding of the concepts' attributes, interactions, and implications for enhanced family-integrated care delivery.

Parental engagement in caregiving activities and its association with socioeconomic and child-rearing environment at home in Vietnam

ABSTRACT Quality caregiving practices facilitate early childhood development. This study examined the levels of parents’ engagement in caregiving activities with children aged 36–59 months and the socioeconomic and child-rearing environmental factors. A total of 1035 children and their caregivers were analysed using the Vietnam Multiple Indicator Cluster Survey 2014. Multivariate logistic regression was performed separately for each following outcome caregiving activity: reading books, telling stories, singing songs, naming/counting, taking the child outside, and playing with child. Results showed that fathers’ engagement levels were substantially lower than the mothers’ in all caregiving activities. Reading books and telling stories was among the least frequent activities engaged in by both parents. Results from the logistic regression model showed that parental high education level, richest household wealth, and having adequate learning resources at home were positively associated with parents’ engagement in caregiving activities. These findings provide important evidence for promoting positive parental caregiving.

Abstract 15394: Caregivers’ Growing Contributions to Heart Failure Self-Care: An Updated Systematic Review

Introduction: In 2015, a seminal systematic review captured the body of literature surrounding the contributions of family caregivers to heart failure (HF) self-care. Since then, the body of HF caregiving research has expanded, necessitating an updated systematic review to inform research, practice, and policy. Goals: To provide an updated systematic review of the empiric literature on informal, unpaid caregivers contributions to HF patients’ self-care. Research Questions: 1) What specific activities do caregivers of people with HF take part in related to HF self-care?; 2) Have these caregiving activities changed over time?; 3) What are the gaps in the science? Methods: The review followed PRISMA guidelines; the protocol was pre-registered in PROSPERO. Comprehensive database search strategies were developed (PubMed, CINAHL, Embase, and Cochrane CENTRAL). The team independently screened and abstracted data; quality was assessed using CASP checklists. Meta-synthesis techniques using critical realist approaches were used to interpret activities, then relationships were analyzed. During data synthesis, activities were benchmarked against the Theory of Self-care in Chronic Illness (TSCI). Results: In total, 2154 research reports were identified, 64 of which were eligible for inclusion (2013-2022). Caregiver contributions to HF self-care activities occurred in TCSI domains of self-care maintenance (91%), monitoring (54%), and management (46%). Activities performed directly on or to the patient were reported more frequently than those performed for the patient. Frequently reported activities like transportation and activity of daily living are not included by the TCSI. Gaps due to ambiguous activity descriptions, inadequate caregiving time quantification, and underrepresented monitoring, supportive, and communication activities were elucidated. Conclusions: Findings support updating the TSCI to include activities antecedent to HF self-care. Identified gaps highlight the need to define specific caregiving activities, determine caregiver task difficulty and burden, and identify caregiver self-care strategy and education needs. The critical need to expose the hidden work of caregiving is essential to inform policy and practice.

Being a Young Carer in Portugal: The Impact of Caring on Adolescents' Life Satisfaction.

Caring for an ill or disabled relative can present significant challenges that may exceed the personal resources of the caregiver. Young carers (YCs) often take on this role, providing support to family members or friends, which can have far-reaching effects on various aspects of their lives. This study involved 235 adolescents, 106 YCs, and 129 non-carers (NCs), who completed questionnaires assessing life satisfaction, satisfaction with social support, family functioning, academic functioning, and caregiving activities. Tests of group differences (MANOVA and MANCOVA controlling for age) showed YCs had more caregiving activities than NCs (as expected) and, critically, significantly lower life satisfaction. Hierarchical regressions with the YCS subsample showed academic functioning, social support, and the negative impact of caregiving were associated with life satisfaction, and that the negative influence of caregiving was linked to family functioning and the quantity of caregiving activities. For NCs, academic functioning, satisfaction with social support, and family functioning were associated with life satisfaction. In conclusion, caregiving in adolescents appears to be linked to lower life satisfaction, but this effect is determined by their social support, academic functioning, and negative impact of caring, which in turn depends on their family functioning and amount of caring activities.

Beyond mothers' time in childcare: Worlds of care and connection in the early life course.

Family scholars examining time spent on children's care focus heavily on mothers' allocations to a specific sphere of active caregiving activities. But children's needs for care and supervision involve connection to others; and many others beyond mothers can and do provide care, especially as children grow. Using a "linked lives" approach that centers relationality, we show how time diaries can illuminate children's time spent in "socially connected" care. Using recent (2014-2019) time diary data from the American and the United Kingdom Time Use Surveys, we examine mothers', children's, and teenagers' days to assess two forms of connected care time. First, results show that in addition to childcare time as traditionally measured by time use studies, mothers spend considerable further time providing connected care through social and community time in which children are included, religious activities with their children present, and mealtime with children. Second, looking from the child's perspective also underscores time in the larger "village" of carers within which children and youth are embedded. Fully two-thirds of 8-14-year-olds' and three-quarters of 15-17-year-olds' waking time is not with mothers-it is spent alone or in social connection to fathers, extended family, teachers, neighbors, and friends. A "linked lives" approach shifts attention to assessing care time in diverse activities with others and to measuring mothers' and children's time in social connections within the larger world. This analytic frame also moves away from maternal determinism to highlight the contours of children's care and social time occurring within the community at large, as well as the roles and responsibilities of those outside of the mother-child dyad across the child's early life course.

노인을 돌보는 가족돌봄자의 돌봄부담-디스트레스 관계에서 가족관계망의 감사와 지원의 효과

The purpose of this study was to examine the relationship between caregiver burden and distress among caregivers of older adults and to identify the family gratitude and family support that moderate the relationship between caregiver burden and distress. Caregiver burden was assessed based on the amount of total caregiving time (per week), the gap between the amount of actual and desired caregiving time, and the negative caregiving experiences. Family characteristics were analyzed based on social support theory and social recognition theory to investigate whether family gratitude and economic support from family members moderate the caregiver burden-stress relationship. The analysis was conducted on 501 primary caregivers for older adults from the 2018 National Survey of Family Caregiving. The results of this study are as follows: First, when controlling for other characteristics, family caregivers who reported more negative caregiving experiences (e.g. demanding care, constant surveillance, interference from others) experienced higher levels of distress when their actual caregiving time exceeded their preferred caregiving time. Secondly, primary caregivers who perceived gratitude from their families appeared lower levels of distress. Moreover, the interaction effect between caregiving time gap and acknowledgment was significant, indicating that the recognition of gratitude from family members is meaningful in moderating the distress of primary caregivers in stressful situations. Thirdly, the interaction effect between negative caregiving experiences and economic support was also significant, suggesting that the intensity of distress caused by negative caregiving experiences can be reduced through the financial support provided by family members.

Musculoskeletal complaints in caregivers of the elderly in the municipality of Ecoporanga - ES

Introduction: The caregiver of the elderly is the person responsible for taking care of the elderly, participating in their routine and taking care of their physical, emotional and social needs. The caregiver donates his/her time to care by working most of the day in positions that are uncomfortable and harmful to the musculoskeletal system, leading to the development of occupational diseases. Objective: To analyze musculoskeletal complaints in caregivers of the elderly. Methodology: This is a quantitative, exploratory and descriptive research carried out through the application of the Nordic Musculoskeletal Symptom Questionnaire composed of 18 structured questions. The sample consisted of 14 Caregivers of the Elderly in the Municipality of Ecoporanga-ES. The questionnaires were applied from May 23 to 24, 2023. Of the inclusion criteria, caregivers who agreed to participate in the research were observed. Results: It was noted that the questionnaire was answered by 57.14% of women and 42.85% of men aged between twenty-one and fifty-nine years, 71.41% of the interviewees felt cervical discomfort and 85.69% felt discomfort in the lumbar stomach. Conclusion: It was concluded that all caregivers complain of at least one type of musculoskeletal disorder associated with the activity of caregiving, and that despite the pain, 85.71% never took sick leave and no caregiver underwent surgery to treat the pain.

A - 55 Boosting Positive Emotion in Caregivers: Moderators of a Positive Psychological Intervention.

There are numerous negative health effects associated with dementia caregiving, including increased stress and depression. Positive emotion interventions could improve health and psychological outcomes for caregivers. The present study was a secondary analysis of data from the Life Enhancing Activities for Family Caregivers (LEAF) trial (R01NR014435). LEAF is an evidence-based intervention designed to increase positive emotion in caregivers. Using multiple linear regression, data from the LEAF trial (n = 170 community-dwelling caregivers) were examined to identify which caregiver characteristics moderated LEAF outcomes (positive emotion, negative emotion, positive aspects of caregiving) over time. Length of time caregiving significantly moderated the effect of positive emotion from baseline to post-intervention, such that longer-term caregivers in the LEAF intervention group experienced greater increases in positive emotion compared to longer-term caregivers in the emotion-reporting waitlist control group (B = 0.119, t = 2.1, p < 0.05). Moreover, gender moderated positive emotion, such that males in the intervention group and females in the waitlist control group experienced greater increases in positive emotion over time than males in the waitlist control group and females in the intervention group, respectively (R2 = 0.06, F[3, 139] = [2.75], p = <0.05). No other effects were found. Results suggest that length of time caregiving and gender play an important role in the extent to which dementia caregivers benefit from positive emotion interventions. This study assists in identifying caregivers for whom positive emotion interventions work best, suggests ways that the intervention should be tailored to match caregiver characteristics, and targets outcomes most impacted according to caregivers' individual differences.

The Moral Dimensions of Family Caregiving for Patients with Advanced Cancer: A Qualitative Study

Background. Family caregivers in charge of patients with advanced cancer play an essential role. The psychosocial cost of these caregiving activities has been studied, and psychosocial interventions have been developed to improve the quality of life of family caregivers. A deeper understanding of caregivers’ burden is essential in order to enhance the benefits of these interventions. The aim of this study was to explore the socioeconomic and cultural factors responsible for shaping the complex personal experience of family caregiving and to analyse the moral dimensions of the caring experience so as to understand its effects on family caregivers more clearly. Materials and Methods. A qualitative study based on in-depth interviews was conducted with patients with advanced cancer (n = 20) and their family caregivers (n = 19) from 2017 to 2020. These interviews were analysed using an inductive approach and an iterative procedure. A thematic analysis was then performed using Tronto’s “ethic of care” framework in order to identify the various levels of responsibility and the relationships and effects involved. Results. Providing patients with advanced cancer with informal care is highly valuable work requiring various moral qualities, including attentiveness, responsibility, competence, and responsiveness. The mental load resulting from the moral aspects of care results from the cumulative effects of carers’ attentiveness and the responsibilities they have taken on. Conclusion. The present findings could guide healthcare professionals to develop best practice resources and guidelines in order to alleviate the hitherto underestimated effects of caring and promote a coordinated public health approach addressing the needs of caregivers. These efforts are particularly important as contemporary health policies tend to promote the shift from inpatient to outpatient treatment, which increases the importance of informal caregiving and the burden involved.

A trial of nurturing care among children who are HIV-exposed and uninfected in eSwatini.

Children who are HIV-exposed and uninfected (CHEU) are a growing population at potential risk of poor neurocognitive development. We tested a nurturing care intervention on children's neurocognitive development and maternal depressive symptoms (primary) with mediation through caregiving activities (secondary). This study was conducted among six intervention and nine comparison antenatal-care/prevention of vertical transmission (ANC/PVT) HIV clinics in eSwatini. We enrolled pregnant women and measured infant development at 9 and 18 months. mothers2mothers (m2m) designed and implemented the clinic-home-community-based intervention. We measured infants' neurodevelopment, maternal depressive symptoms and caregiving activities with the Mullen Scales of Early Learning (MSEL), Edinburgh Postnatal Depression Scale, HOME Inventory and Family Care Indicators. We fitted linear mixed effects regression models with clinic random effects to compare intervention versus comparison arms, and generalised structural equation models to evaluate mediation, adjusting for confounders. Mother-infant pairs (n = 429) participated between January 2016 through May 2018. Socio-demographic characteristics were balanced between arms except for higher rates of peri-urban versus rural residence and single versus married mothers in the comparison group. The 18 month retention was 82% (180/220) intervention, 79% (166/209) comparison arm, with 25 infant deaths. Intervention MSEL scores were significantly, and modestly, higher in receptive language (55.7 [95% CI 54.6, 56.9] vs. 53.7 [95% CI 52.6, 54.8]), expressive language (42.5 [95% CI 41.6, 39.8] vs. 40.8 [95% CI 39.8, 41.7]) and composite MSEL (85.4 [95% CI 83.7, 84.5] vs. 82.7 [95% CI 81.0, 84.5]), with no difference in maternal depressive symptoms or in observations of mother-child interactions. Intervention book-sharing scores were higher (0.63 vs. 0.41) and mediated the effect on MSEL scores (indirect effect, p-values ≤ 0.024). The direct effects on visual reception and expressive language scores were significantly higher in the intervention compared to the comparison arm (coefficients 1.93 [95% CI 0.26, 3.60] and 1.66 [95% CI 0.51, 2.79, respectively]). Nurturing care interventions can be integrated into ANC/PVT clinic-home-community programmes. The intervention, mediated through interactive caregiving activities, increased language development scores among CHEU. Partnering with a local team, m2m, to design and implement a culturally relevant intervention illustrates the ability to impact parent-child play and learning activities that are associated with children's neurodevelopment.

‘Children awaken by playing’: a qualitative exploration of caregivers’ norms, beliefs and practices related to young children’s learning and early childhood development in rural Burkina Faso

IntroductionEvidence suggests that responsive caregiving and early learning activities positively impact developmental outcomes, with positive effects throughout the life course. Early childhood development interventions should align with local values, beliefs...

Prevalence and risks factors of caregiving-related low back pain among caregivers of stroke survivors: a systematic review and meta-analysis.

Stroke causes disability that makes its survivors depend on caregivers for help. The caregivers offer help during lifting and transferring patients from one place to another. However, such activities result in the caregivers sustaining musculoskeletal injuries such as the low back pain (LBP). The aim of this study was to carry out a systematic review and meta-analysis to determine the prevalence of LBP and its risk factors among these caregivers. PubMED, Embase, Web of Science (WoS) and CINAHL were searched until January 2023, and cross-sectional studies were included. Data on prevalence of LBP due to caregiving activities and participants' characteristics such as sex and nature of caregiving were extracted. Risks of bias of the included studies were assessed using Agency for healthcare Research and Quality (AHRQ) tool. The data were analyzed using both narrative and quantitative syntheses. In the quantitative synthesis, random effect model meta-analysis of the prevalence and odd of developing LBP between men and women; and between partial and complete caregivers was used. Fives studies (N.=644) were included. The results showed that the prevalence of LBP was 53.9%, with 96% CI from 50.0% to 57.8%. In addition, there was no statistically significant difference in the risk of developing LBP between men and women (OR=1.58, 95% CI=0.27 to 9.27, P=0.61); and between partial and complete caregivers (OR=1.33, 95% CI=0.32 to 5.61, P=0.70). About half of caregivers of stroke survivors may experience LBP. Therefore, this should be considered during rehabilitation.

Cognitive and Socioemotional Caregiving in Mothers, Fathers, and Children’s Other Caregivers from 51 Low- and Middle-Income Countries

SYNOPSIS Objective. Cognitive and socioemotional caregiving practices are both important for child development, but little is known about the extent to which children’s different caregivers engage in the two types of practices or their relative effects on child development, especially in low- and middle-income countries (LMICs). Design. The current study investigates how often mothers, fathers, and children’s other caregivers in 159,959 families from 51 LMICs engage in cognitive versus socioemotional caregiving practices, associations between these caregiving practices, and how the balance between these practices predicts child development. Results. Caregivers reportedly engage in more socioemotional than cognitive caregiving practices in all LMICs examined at all levels of national development. The more mothers, fathers, and other caregivers reportedly engage in cognitive caregiving practices, the more they engage in socioemotional parenting practices. Engaging in cognitive caregiving practices is the strongest predictor of early childhood development when considering cognitive caregiving, socioemotional caregiving, and the balance between the two types of caregiving. Conclusions. Promoting increased caregiver use of cognitive caregiving and integration of cognitive and socioemotional caregiving could close the gap between the number of cognitive and socioemotional caregiving activities parents engage in and potentially promote child development in LMICs.

Improving Dementia Caregiver Activation With a Brief Communication Module.

Objective: Palliative care often plays a pivotal role in supporting informal caregivers of persons living with dementia who experience a lack of continuity in care. Dementia caregiver activation, the caregiver's willingness and ability to navigate care needs, requires communication skills for developing relationships with healthcare providers. Communication activation is important because caregivers facilitate physician and patient information exchange. This study aimed to explore changes in communication outcomes (attitude, knowledge, and skills) and impact on caregiver communication activation (confidence, self-report) following completion of a brief communication module. Methods: A 15-minute asynchronous online module was developed to provide caregivers with communication skills for working with doctors and nurses. Caregivers completed pre/post module measures of communication outcomes, a vignette for applying communication strategies and were interviewed within a week of module completion to assess self-reported communication activation. Module acceptability was also evaluated. Results: Communication knowledge (P < .01) significantly increased and nearly all participants (99%) demonstrated use of module-specific communication skills after completing the module. While not statistically significant, caregiver attitudes were in the expected direction. Caregiver self-reported communication confidence (P < .001) significantly increased and 84% of caregivers described communication activation at post-module. Caregivers (83%) were likely to recommend the module. Conclusions: The brief communication module for dementia caregivers in this project offers an online resource with low time-burden that results in caregiver communication activation. Future testing in the clinical setting will increase understanding of its efficacy and integration and could be a viable resource for palliative care providers.

Acceptability and Feasibility of a Socially Enhanced, Self-Guided, Positive Emotion Regulation Intervention for Caregivers of Individuals With Dementia: Pilot Intervention Study.

The responsibilities of being a primary caregiver for a loved one with dementia can produce significant stress for the caregiver, leading to deleterious outcomes for the caregiver's physical and psychological health. Hence, researchers are developing eHealth interventions to provide support for caregivers. Members of our research team previously developed and tested a positive emotion regulation intervention that we delivered through videoconferencing, in which caregiver participants would meet one-on-one with a trained facilitator. Although proven effective, such delivery methods have limited scalability because they require significant resources in terms of cost and direct contact hours. This study aimed to conduct a pilot test of a socially enhanced, self-guided version of the positive emotion regulation intervention, Social Augmentation of Self-Guided Electronic Delivery of the Life Enhancing Activities for Family Caregivers (SAGE LEAF). Studies have shown that social presence or the perception of others in a virtual space is associated with enhanced learning and user satisfaction. Hence, the intervention leverages various social features (eg, discussion boards, podcasts, videos, user profiles, and social notifications) to foster a sense of social presence among participants and study team members. Usability, usefulness, feasibility, and acceptability data were collected from a pilot test in which participants (N=15) were given full access to the SAGE LEAF intervention over 6 weeks and completed preintervention and postintervention assessments (10/15, 67%). Preliminary outcome measures were also collected, with an understanding that no conclusions about efficacy could be made, because our pilot study did not have a control group and was not sufficiently powered. The results suggest that SAGE LEAF is feasible, with participants viewing an average of 72% (SD 42%) of the total available intervention web pages. In addition, acceptability was found to be good, as demonstrated by participants' willingness to recommend the SAGE LEAF program to a friend or other caregiver. Applying Pearson correlational analyses, we found moderate, positive correlation between social presence scores and participants' willingness to recommend the program to others (r9=0.672; P=.03). We also found positive correlation between social presence scores and participants' perceptions about the overall usefulness of the intervention (r9=0.773; P=.009). This suggests that participants' sense of social presence may be important for the feasibility and acceptability of the program. In this pilot study, the SAGE LEAF intervention demonstrates potential for broad dissemination for dementia caregivers. We aim to incorporate participant feedback about how the social features may be improved in future iterations to enhance usability and to further bolster a sense of social connection among participants and study staff members. Next steps include partnering with dementia clinics and other caregiver-serving organizations across the United States to conduct a randomized controlled trial to evaluate the effectiveness of the intervention.

Universal design and social care: Assistive robots as other users of the built environment?

Abstract The importance of designing architecture and physical environment using the Universal Design method so that all people have the opportunity to reside and participate in the environment has long been recognised. This design approach is even more important in housing for older adults and people with disabilities. However, even in environments designed according to universal design principles, the assistance of human staff is often necessary. We consider some of the routine and physically demanding activities of caregivers could be possibly replaced by robots. This would offer people who require care a greater degree of independence and relieve the burden on staff to give them more time for activities that robots cannot yet do. Robotics is a discipline covering various aspects of robot design and use. Apparently, numerous robots and robotic devices being developed for the social or healthcare sector, called Assistive Robots, are still in the concept, design or testing phase. However, this may change with the increasing investment in robotics and there is a need to be realistic about their possible use in the near future. Another considered robot type is a Butler or Service Robot which helps with delivering various objects including food or medicine. These types of robots require a barrier-free, accessible space to move around, similar to what people in wheelchairs or bedridden persons need for their movement and transfer. This paper publishes the results of a simulation of Assistive and Butler Robots in an extra-care housing facility, where social services with the help of robots are to be provided in the future. Manoeuvring of people and robots is simulated in a floorplan of the chosen model project of a family type house. Research aims to investigate the robots’ spatial requirements in a building project designed in accordance with universal design principles. The paper concludes with several answers to the questions posed and recommendations for the creation of residential buildings that support the symbiosis of humans and robots.

The Effects of Stakeholder Perceptions on the Use of Humanoid Robots in Care for Older Adults: Postinteraction Cross-Sectional Study.

Efficient use of humanoid social robots in the care for older adults requires precise knowledge of expectations in this area. There is little research in this field that includes the interaction of stakeholders with the robot. Even fewer studies have compared the perceptions of older people (as care recipients) and professional caregivers (representing those taking care of older adults in teams with robots). The aim of this study was to analyze whether specific aspects of the perceptions about humanoid robots influence attitudes after interacting with the robot and to compare the opinions of different stakeholders (older people and their professional caregivers) on this topic. We analyzed the potential impact of the differences in perception of the robot between stakeholder groups with respect to how the robot should be designed and tailored to fit the specific needs of future users. We also attempted to define areas where targeted educational activities could bring the attitudes of the two groups of stakeholders closer to each other. The studied group was a conveniently available sample of individuals who took part in the presentation of and interaction with a humanoid social robot. Among them, there were 48 community-dwelling older adults (aged ≥60 years), who were participants of day care units (which may signal the presence of self-care needs), and 53 professional caregivers. The participants were asked to express their views after an interaction with a humanoid social robot (TIAGo) using the Users' Needs, Requirements and Abilities Questionnaire (UNRAQ) and the Godspeed Questionnaire Series (GQS). Compared to the caregivers, older adults not only assessed the robot more positively with respect to its roles as a companion and assistant (P=.009 and P=.003, respectively) but also had higher scores on their need to increase their knowledge about the robot (P=.049). Regarding the robot's functions, the greatest differences between groups were observed for the social aspects on the UNRAQ, including decreasing the sense of loneliness (P=.003) and accompanying the user in everyday activities (P=.005). As for the GQS, the mean scores of the Animacy, Likeability, and Perceived Intelligence scales were significantly higher for older participants than for caregivers (P=.04, P<.001, and P<.001, respectively). The only parameter for which the caregivers' scores were higher than those of the older adults was the Artificial-Lifelike item from the Anthropomorphism scale of the GQS (P=.03). The acceptance of the social functions of a humanoid robot is related to its perception in all analyzed aspects, whereas the expected usefulness of a care robot is not linked to aspects of anthropomorphism. Successful implementation of robots in the care for older people thus depends on considering not only the fears, needs, and requirements of various stakeholders but also on the perceptions of the robot. Given the differences between the stakeholders, targeted and properly structured educational and training activities for caregivers and prospective users may enable a seamless integration of robotic technologies in care provision.

Impacts of Perceived Choice on Physical Strain, Emotional Stress and Health among Caregivers.

Having no choice in becoming a caregiver has been associated with higher levels of emotional stress and physical strain. This secondary analysis examined associations between caregivers' perceived choice and health outcomes. This study utilized data from caregivers who answered a question about whether they felt they had a choice to take on caring for a care recipient in the Caregiving in the U.S. in 2020 survey. Variables of caregivers' and recipients' characteristics, caregiving activities, and health outcomes were extracted. Data were analyzed using descriptive statistics, t-tests, Chi-squared tests, and regression models. More than half of the 1,642 caregivers (54.4%) perceived no choice in becoming a caregiver. Having no choice was associated with higher levels of physical strain and emotional stress, and greater negative impact on caregiver's health. Other predictive variables of higher physical strain included being a primary caregiver, recipients having more comorbidities, and a higher level of care intensity. Higher education level, household income, number of recipient's conditions, level of care intensity, and being a primary caregiver were associated with higher levels of emotional stress. Taking care of a spouse and non-relative compared to taking care of a grandparent or parent was associated with lower emotional stress. Recipients with more comorbidities and higher care intensity were associated with worse caregiver health. There is a need to screen and identify caregivers who have no choice in caregiving and assist them in providing care for their recipient to prevent them from being invisible patients.

Caregiver burden in Parkinson’s disease: a mixed-methods study

BackgroundProviding informal care for a person with Parkinson’s disease (PD) can be a demanding process affecting several dimensions of a caregiver’s life and potentially causing caregiver burden. Despite the emerging literature on caregiver burden in people with PD, little is known about the inter-relationship between quantitative and qualitative findings. Filling this knowledge gap will provide a more holistic approach to develop and design innovations aiming at reducing or even preventing caregiver burden. This study aimed to characterize the determinants of caregiver burden among informal caregivers of persons with PD, in order to facilitate the development of tailored interventions that reduce caregiver burden.MethodsWe conducted a cross-sectional study in The Netherlands using a sequential mixed methods approach, entailing a quantitative study of 504 persons with PD and their informal caregivers as well as a qualitative study in a representative subsample of 17 informal caregivers. The quantitative study included a standardized questionnaire of caregiver burden (Zarit Burden Inventory) and patient-related (Beck Depression Inventory, State-Trait Anxiety Inventory, Acceptance of Illness Scale, MDS-Unified Parkinson’s Disease Rating Scale part II on motor functions in daily life, Self-assessment Parkinson’s Disease Disability Score), caregiver-related (Brief Coping Orientation to Problems Experience Inventory, Caregiver Activation Measurement, Multidimensional Scale of Perceived Social Support) and interpersonal determinants (sociodemographic variables including among others gender, age, education, marital status and working status). The qualitative study consisted of semi-structured interviews. Multivariable regression and thematic analysis were used to analyse quantitative and qualitative data, respectively.ResultsA total of 337 caregivers were women (66.9%), and the majority of people with PD were men (N = 321, 63.7%). The mean age of persons with PD was 69.9 (standard deviation [SD] 8.1) years, and the mean disease duration was 7.2 (SD 5.2) years. A total of 366 (72.6%) persons with PD had no active employment. The mean age of informal caregivers was 67.5 (SD 9.2) years. Most informal caregivers were female (66.9%), had no active employment (65.9%) and were the spouse of the person with PD (90.7%). The mean Zarit Burden Inventory score was 15.9 (SD 11.7). The quantitative study showed that a lack of active employment of the person affected by PD was associated with a higher caregiver burden. The qualitative study revealed cognitive decline and psychological or emotional deficits of the person with PD as additional patient-related determinants of higher caregiver burden. The following caregiver-related and interpersonal determinants were associated with higher caregiver burden: low social support (quantitative study), concerns about the future (qualitative study), the caregiving-induced requirement of restrictions in everyday life (qualitative study), changes in the relationship with the person with PD (qualitative study) and a problem-focused or avoidant coping style (both studies). Integration of both data strands revealed that qualitative findings expanded quantitative findings by (1) distinguishing between the impact of the relationship with the person with PD and the relationship with others on perceived social support, (2) revealing the impact of non-motor symptoms next to motor symptoms and (3) revealing the following additional factors impacting caregiver burden: concern about the future, perceived restrictions and limitations in performing daily activities due to the disease, and negative feelings and emotional well-being. Qualitative findings were discordant with the quantitative finding demonstrating that problem-focused was associated with a higher caregiver burden. Factor analyses showed three sub-dimensions of the Zarit Burden Inventory: (i) role intensity and resource strain, (2) social restriction and anger and (3) self-criticism. Quantitative analysis showed that avoidant coping was a determinant for all three subscales, whereas problem-solved coping and perceived social support were significant predictors on two subscales, role intensity and resource strain and self-criticism.ConclusionsThe burden experienced by informal caregivers of persons with PD is determined by a complex interplay of patient-related, caregiver-related and interpersonal characteristics. Our study highlights the utility of a mixed-methods approach to unravel the multidimensional burden experienced by informal caregivers of persons with chronic disease. We also offer starting points for the development of a tailored supportive approach for caregivers.

Quality of life in caregivers of a child with a developmental and epileptic encephalopathy.

To explore the relationship between social care-related quality of life (SCrQoL) for caregivers of a child with a developmental and epileptic encephalopathy (DEE; such as SCN2A and Dravet syndrome) and health literacy, illness perceptions, and caregiver activation. As part of a larger pre-post pilot study of an information linker service, caregivers completed a baseline questionnaire which included demographics and measures to assess SCrQoL, health literacy, illness perceptions, and caregiver activation. We used Spearman's Rho to determine relationships between variables. Seventy-two caregivers completed the questionnaire. Total SCrQoL varied widely, ranging from an 'ideal state' to 'high needs state'. Caregivers most frequently reported high needs regarding doing activities they enjoy and looking after themselves. Total SCrQoL was correlated with cognitive (r[70] = -0.414, p < 0.000) and emotional representations of illness (r[70] = -0.503, p < 0.000), but not coherence (r = -0.075, p = 0.529). Total SCrQoL was not correlated with health literacy (r[70] = 0.125, p = 0.295) or caregiver activation (r[70] = 0.181, p = 0.127). Future research should explore whether interventions that help caregivers cognitively reframe the negative experiences of having a child with a DEE, and support them to partake in activities they enjoy, boost their SCrQoL. Caregiver social care-related quality of life (SCrQoL) varied widely, from 'ideal state' to 'high needs state'. Most common high needs were doing enjoyable activities and self-care. Caregivers with higher SCrQoL may perceive their child's illness as less threatening. SCrQoL does not appear to be related to caregiver activation in this sample.