Dataset Information

Adults' recollections and perceptions of childhood caregiving to a parent with significant physical disability.

ABSTRACT: Caregiving roles of children <18 years of age living with parents with health conditions or disability have been studied extensively abroad, but little U.S. research has examined the caregiving activities and perceptions of children with parents with significant physical disability.To examine children's caregiving activities for their disabled parent, childhood perceptions of these activities, and adult views of this caregiving.We conducted 1-h, semi-structured, open-ended interviews with 20 persons age ?21 years who as children (age < 18 years) had a parent with significant mobility disability. We used conventional content analysis to identify themes.Interviewees' mean (standard deviation) age was 36.7 (13.8) years; 4 were male. As children, most interviewees assisted their disabled parent with activities of daily living (ADLs) and instrumental ADLs; some children provided more medical supports. Several parents, especially of older interviewees, did not seek their children's care. Interviewees reported both positive and negative childhood attitudes about caregiving. Roughly half recalled as children feeling proud, special, or otherwise positively toward caregiving activities, while about one-third viewed caregiving as just part of their daily reality (i.e., simply needing to be done). Approximately half remembered also feeling resentful, primarily from time demands, insufficient appreciation, and being different from their peers. Interviewees reported gender and cultural factors affecting their caregiving roles and perceptions.Children can provide significant care to parents with physical disability. Understanding better their roles and perceptions could suggest ways to improve these experiences for both child and parent.

SUBMITTER: Iezzoni LI

PROVIDER: S-EPMC4808597 | biostudies-literature | 2016 Apr

REPOSITORIES: biostudies-literature

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Adults' recollections and perceptions of childhood caregiving to a parent with significant physical disability.

Iezzoni Lisa I LI Wint Amy J AJ Kuhlthau Karen A KA Boudreau Alexy Arauz AA

Disability and health journal 20151201 2

<h4>Background</h4>Caregiving roles of children <18 years of age living with parents with health conditions or disability have been studied extensively abroad, but little U.S. research has examined the caregiving activities and perceptions of children with parents with significant physical disability.<h4>Objective</h4>To examine children's caregiving activities for their disabled parent, childhood perceptions of these activities, and adult views of this caregiving.<h4>Methods</h4>We conducted 1- ...[more]

PMID: 26712460

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Project description:BackgroundAdverse childhood experiences (ACEs) negatively impact health throughout the life course. For children exposed to ACEs, resilience may be particularly important. However, the literature regarding resilience, particularly the self-regulation aspect of resilience, is not often described in children with ACEs. Additionally, family and community factors that might help promote resilience in childhood may be further elucidated. We aimed to describe the relationship between ACEs and parent-perceived resilience in children and examine the child, family, and community-level factors associated with child resilience.MethodsUsing the US-based, 2011-2012 National Survey of Children's Health, we examined adverse childhood experiences (NSCH-ACEs) as the main exposure. Affirmative answers to adverse experiences generated a total parent-reported NSCH-ACE score. Bivariate and multivariable logistic regression models were constructed for parent-perceived child resilience and its association with ACEs, controlling for child, family, and neighborhood-level factors.ResultsAmong 62,200 US children 6-17 years old, 47% had 0 ACEs, 26% had 1 ACE, 19% had 2-3 ACEs, and 8% had 4 or more ACEs. Child resilience was associated with ACEs in a dose-dependent relationship: as ACEs increased, the probability of resilience decreased. This relationship persisted after controlling for child, family, and community factors. Specific community factors, such as neighborhood safety (p < .001), neighborhood amenities (e.g., libraries, parks) (p < .01) and mentorship (p < .05), were associated with significantly higher adjusted probabilities of resilience, when compared to peers without these specific community factors.ConclusionsWhile ACEs are common and may be difficult to prevent, there may be opportunities for health care providers, child welfare professionals, and policymakers to strengthen children and families by supporting community-based activities, programs, and policies that promote resilience in vulnerable children and communities in which they live.

Project description:BackgroundThe health of a carer is a key factor which can affect the well-being of the child with disabilities for whom they care. In low-income countries, many carers of children with disabilities contend with poverty, limited public services and lack assistive devices. In these situations caregiving may require more physical work than in high-income countries and so carry greater risk of physical injury or health problems. There is some evidence that poverty and limited access to health care and equipment may affect the physical health of those who care for children with disabilities. This study seeks to understand this relationship more clearly.MethodsA mixed methods study design was used to identify the potential physical health effects of caring for a child with moderate-severe motor impairments in Kilifi, Kenya. Qualitative data from in-depth interviews were thematically analysed and triangulated with data collected during structured physiotherapy assessment.ResultsCarers commonly reported chronic spinal pain of moderate to severe intensity, which affected essential activities. However, carers differed in how they perceived their physical health to be affected by caregiving, also reporting positive benefits or denying detrimental effects. Carers focussed on support in two key areas; the provision of simple equipment and support for their children to physically access and attend school.ConclusionsCarers of children with moderate-severe motor impairments live with their own physical health challenges. While routine assessments lead to diagnosis of simple musculoskeletal pain syndromes, the overall health status and situation of carers may be more complex. As a consequence, the role of rehabilitation therapists may need to be expanded to effectively evaluate and support carers' health needs. The provision of equipment to improve their child's mobility, respite care or transport to enable school attendance is likely to be helpful to carers and children alike.

Project description:IntroductionAlthough physical activity (PA) is crucial for health, the literature is mixed about how individuals' PA decisions are affected by their spouses. To fill this gap, we examined the extent to which providing care for one spouse affects the PA of the other spouse among those aged 50 or older in the United States.MethodsWe analyzed 9,173 older adults living with their spouses or partners from the 2004 to 2016 waves of the Health and Retirement Study. To identify the causal effect of spousal caregiving on the PA of older adults, we estimated individual-fixed effects models using a two-stage least squared instrumental variable approach with spousal falls as our instrument. We also estimated the models by splitting the sample by gender and race/ethnicity to identify heterogeneous impacts of spousal caregiving on PA decisions among subgroups.ResultsWe found that a one percentage point increase in the probability of providing care to spouses led to an increase in the probability of initiating moderate or vigorous PA (MVPA) by 0.34-0.52 percentage points. This effect was salient, especially among female and non-Hispanic white older adults.DiscussionCaregiving experience might provide opportunities to learn about caregiving burdens and trigger an emotional response about the salience of an event (i.e., they need care in the future). Older caregivers might start MVPA in an effort to improve or maintain their health and avoid burdening their families for caregiving in the future. This study demonstrated spousal influence on PA. Instead of delivering PA-promotion information (e.g., the harm of sedentary lifestyle and benefits of regular PA) to individuals, risk communication and education efforts on PA promotion might be more effective considering the family context. Family events such as health shocks or the emergence of caregiving needs from family members provide windows of opportunities for intervening. Subgroup differences should also be considered in targeted interventions.

Project description:BACKGROUND:Socioeconomic position (SEP) is an important contextual factor in the Stress Process Model of caregiving. However, the basic assumption that low SEP is associated with greater caregiver burden has so far lacked empirical support. The objective of this study was to investigate social inequalities in the caregiver burden among caregiving partners of persons with a physical disability, i.e., spinal cord injury (SCI), applying a dyadic approach. More specifically, we investigated 1) the association of the caregivers' SEP with caregiver burden ('actor effect'); 2) the association of the care-receivers' SEP with caregiver burden ('partner effect'), and 3) potential mediators of the association between SEP and caregiver burden. METHODS:Cross-sectional survey data from 118 couples of persons with SCI and their partners living in Switzerland was used. We firstly employed logistic regression to investigate the actor and partner effects of SEP on objective (hours of caregiving) and subjective caregiver burden (Zarit Burden Interview). We additionally used structural equation modelling to explore whether unfulfilled support needs, psychosocial resources and the care-receivers health status mediated the association between SEP and caregiver burden. SEP was operationalized by household income, education, subjective social position, financial strain and home ownership. RESULTS:We observed a consistent trend towards higher objective and subjective burden in lower SEP groups. Caregivers with higher subjective social positon and home ownership indicated lower subjective burden, and caregivers with higher education and absence of financial strain reported lower objective burden. Further evidence suggested a partner effect of SEP on caregiver burden, whereby objective caregiver burden was reduced in couples where the care-receiver had a higher educational level. The negative association between SEP and subjective burden was partially mediated by the unfulfilled support needs and deprived psychological resources of the caregiver, and the poor health status of the care-receiver. Similar mediation effects were not supported for objective burden. CONCLUSIONS:Our study, in the context of SCI, provides support for the contextual role of SEP in the Stress Process Model of caregiving. To reduce subjective caregiver burden, policy programs may target the strengthening of psychosocial resources, or the improvement of access to support services for caregivers with low SEP.

Project description:BackgroundHospital-acquired disability (HAD) is common and often related to low physical activity while in the hospital.ObjectiveTo examine whether wearable hospital activity trackers can be used to predict HAD.DesignA prospective observational study between January 2016 and March 2017.SettingAn academic medical center.ParticipantsCommunity-dwelling older adults, aged 60?years or older, enrolled within 24?hours of admission to general medicine (n = 46).Main measuresPrimary outcome was HAD, defined as having one or more new activity of daily living deficits, decline of four or greater on the Late-Life Function and Disability Instrument (calculated between baseline and discharge), or discharge to a skilled nursing facility. Hospital activity (mean active time, mean sedentary time, and mean step counts per day) was measured using ankle-mounted accelerometers. The association of the literature-based threshold of 900 steps/day with HAD was also evaluated.ResultsMean age was 73.2?years (SD = 9.5?years), 48% were male, and 76% were white. Median length of stay was 4?days (interquartile range [IQR] =?2.0-6.0?days); 61% (n = 28) reported being able to walk without assistance of another person or walking aid at baseline. Median daily activity time and step counts were 1.1 h/d (IQR = 0.7-1.7 h/d) and 1455.7 steps/day (IQR = 908.5-2643 steps/day), respectively. Those with HAD (41%; n = 19) had lower activity time (0.8 vs 1.4 h/d; P = .04) and fewer step counts (1186 vs 1808 steps/day; P = .04), but no difference in sedentary time, compared to those without HAD. The 900 steps/day threshold had poor sensitivity (40%) and high specificity (85%) for detecting HAD.ConclusionsLow hospital physical activity, as measured by wearable accelerometers, is associated with HAD. Clinicians can utilize wearable technology data to refer patients to physical/occupational therapy services or other mobility interventions, like walking programs. J Am Geriatr Soc 68:261-265, 2020.

Project description:Mobile and wearable sensors provide a unique opportunity to capture the daily activities and interactions that shape developmental trajectories, with potential to revolutionize the study of development (de Barbaro, 2019). However, developmental research employing sensors is still in its infancy, and parents' comfort using these devices is uncertain. This exploratory report assesses parent willingness to participate in sensor studies via a nationally representative survey (N = 210) and live recruitment of a low-income, minority population for an ongoing study (N = 359). The survey allowed us to assess how protocol design influences acceptability, including various options for devices and datastream resolution, conditions of data sharing, and feedback. By contrast, our recruitment data provided insight into parents' true willingness to participate in a sensor study, with a protocol including 72 h of continuous audio, motion, and physiological data. Our results indicate that parents are relatively conservative when considering participation in sensing studies. However, nearly 41 % of surveyed parents reported that they would be at least somewhat willing to participate in studies with audio or video recordings, 26 % were willing or extremely willing, and 14 % reported being extremely willing. These results roughly paralleled our recruitment results, where 58 % of parents indicated interest, 29 % of parents scheduled to participate, and 10 % ultimately participated. Additionally, 70 % of caregivers stated their reason for not participating in the study was due to barriers unrelated to sensing while about 25 % noted barriers due to either privacy concerns or the physical sensors themselves. Parents' willingness to collect sensitive datastreams increased if data stayed within the household for individual use only, are shared anonymously with researchers, or if parents receive feedback from devices. Overall, our findings suggest that given the correct circumstances, mobile sensors are a feasible and promising tool for characterizing children's daily interactions and their role in development.

Dataset Information

Adults' recollections and perceptions of childhood caregiving to a parent with significant physical disability.

Publications

Adults' recollections and perceptions of childhood caregiving to a parent with significant physical disability.

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