Abstract:
BACKGROUND: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. OBJECTIVE:To examine children's caregiving activities for their disabled parent, childhood perceptions of these activities, and adult views of this caregiving. METHODS: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. RESULTS: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. CONCLUSIONS: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.
journal_name
Disabil Health Jjournal_title
Disability and health journalauthors
Iezzoni LI,Wint AJ,Kuhlthau KA,Boudreau AAdoi
10.1016/j.dhjo.2015.10.009subject
Has Abstractpub_date
2016-04-01 00:00:00pages
208-17issue
2eissn
1936-6574issn
1876-7583pii
S1936-6574(15)00170-3journal_volume
9pub_type
杂志文章abstract:BACKGROUND:Women with intellectual and developmental disabilities (IDD) are bearing children at increasing rates. However, there is very little research about pregnancy experiences and birth outcomes among women with IDD. No studies to date have examined birth outcomes with a US population-based sample. OBJECTIVE:The ...
journal_title:Disability and health journal
pub_type: 杂志文章
doi:10.1016/j.dhjo.2017.02.010
更新日期:2017-07-01 00:00:00
abstract:BACKGROUND:A growing number of states are turning to managed care arrangements to provide care to senior and disabled Medicaid beneficiaries. Despite their complex care needs, very little is known about the experience of these individuals in managed care. OBJECTIVE:To document experiences of a sample of aged and disab...
journal_title:Disability and health journal
pub_type: 杂志文章
doi:10.1016/j.dhjo.2020.100975
更新日期:2021-01-01 00:00:00
abstract:BACKGROUND:To implement appropriate programs for promoting physical activity (PA) in people who are Deaf, it is important to have valid instruments for assessing PA in this population. OBJECTIVE:The main purpose of this study was to examine the criterion validity of the short form of the International Physical Activit...
journal_title:Disability and health journal
pub_type: 杂志文章
doi:10.1016/j.dhjo.2016.06.005
更新日期:2017-01-01 00:00:00
abstract:BACKGROUND:The transition to adulthood, the gradual change in roles and responsibilities, is identified as a challenging time for adolescents and young adults with physical disabilities, including those with cerebral palsy. Health care, education, employment, independent living, and community engagement have been ident...
journal_title:Disability and health journal
pub_type: 杂志文章
doi:10.1016/j.dhjo.2016.09.008
更新日期:2017-01-01 00:00:00
abstract:BACKGROUND:Hip osteoarthritis, a common age-associated condition, produces considerable disability that may be influenced by a variety of factors other than age. This study examines the magnitude and impact of the presence of comorbid and/or concurrent depression and anxiety symptoms on the disability experienced befor...
journal_title:Disability and health journal
pub_type: 杂志文章
doi:10.1016/j.dhjo.2008.10.001
更新日期:2009-01-01 00:00:00
abstract:BACKGROUND:No definitive conclusions have been made on the levels of physical activity in the rheumatoid arthritis (RA) population. Similarly no clear consensus has been reached on the correlates and predictors of physical activity in the population. OBJECTIVE:To profile total energy expenditure (TEE), resting energy ...
journal_title:Disability and health journal
pub_type: 杂志文章
doi:10.1016/j.dhjo.2015.03.008
更新日期:2015-10-01 00:00:00
abstract:BACKGROUND:Trends in the patterns and prevalence of chronic disability among U.S. residents carry important implications for public health and public policies across multiple societal sectors. OBJECTIVES:To examine trends in U.S. adult population rates of chronic disability from 1998 to 2011 using 7 different disabili...
journal_title:Disability and health journal
pub_type: 杂志文章
doi:10.1016/j.dhjo.2014.05.007
更新日期:2014-10-01 00:00:00
abstract:BACKGROUND:Young adults with cerebral palsy (CP) are reported to be less active than their typically developing peers, have higher rates of sedentary behaviors, engage in slower tempo activities, and overall participate in a smaller variety of physical activities (PA). Functional motor level and environmental barriers ...
journal_title:Disability and health journal
pub_type: 杂志文章
doi:10.1016/j.dhjo.2019.02.008
更新日期:2019-07-01 00:00:00
abstract:BACKGROUND:Perceived social support has been found to be associated with depression, subjective well-being and psychological health in cross-sectional studies in people with physical disabilities. No longitudinal studies have been conducted to examine these associations over time using a comprehensive measure of social...
journal_title:Disability and health journal
pub_type: 杂志文章
doi:10.1016/j.dhjo.2018.09.005
更新日期:2019-04-01 00:00:00
abstract:BACKGROUND:Patient at Risk (PAR) is an online database using an emergency information form (EIF) that parents of children with special health care needs (CSHCN) complete to store their child's medical information. Emergency medical service (EMS) providers can then access PAR during medical emergencies or for pre-planni...
journal_title:Disability and health journal
pub_type: 杂志文章
doi:10.1016/j.dhjo.2019.100852
更新日期:2020-04-01 00:00:00
abstract:BACKGROUND:Studies have reported that adolescents with intellectual and developmental disabilities (IDD) have a higher prevalence of obesity due to medication intake, poor diet, and physical inactivity. More importantly, they lack awareness and comprehension to prevent weight problems. Thereby, health-promoting practic...
journal_title:Disability and health journal
pub_type: 杂志文章
doi:10.1016/j.dhjo.2019.03.012
更新日期:2019-10-01 00:00:00
abstract:BACKGROUND:Adolescents with intellectual and developmental disabilities (IDD) have high rates of obesity. However, little research has been conducted demonstrating effective strategies and barriers for weight loss or weight management in adolescents with IDD. Furthermore, parents play a large role in terms of weight ma...
journal_title:Disability and health journal
pub_type: 杂志文章
doi:10.1016/j.dhjo.2015.07.003
更新日期:2016-01-01 00:00:00
abstract:BACKGROUND:Health care improvements have led to increased survival among stroke patients; however, the disability level remains high. These patients require assistance from caregivers, particularly in the first year after stroke. Longitudinal studies of quality of life (QoL) and the factors associated with QoL for both...
journal_title:Disability and health journal
pub_type: 杂志文章,多中心研究
doi:10.1016/j.dhjo.2015.10.007
更新日期:2016-04-01 00:00:00
abstract:BACKGROUND:50% of patients with Chiari Malformation (CM) report a history of depression; however, rates of other psychological symptoms are unknown. Further, it is unclear whether surgical correction impacts pain, disability, and psychological symptoms. OBJECTIVE:/Hypothesis: We examined rates of symptoms in a nationw...
journal_title:Disability and health journal
pub_type: 杂志文章
doi:10.1016/j.dhjo.2019.05.004
更新日期:2019-10-01 00:00:00
abstract:BACKGROUND:This study compared the expense associated with use of personal assistance services (PAS) for individuals with disabilities to the expense incurred by individuals with disabilities who did not use PAS. The intent of this investigation was to assess the disability accommodation costs and benefits of PAS and n...
journal_title:Disability and health journal
pub_type: 杂志文章
doi:10.1016/j.dhjo.2009.04.002
更新日期:2009-10-01 00:00:00
abstract:BACKGROUND:This paper is an introduction to four papers that present the findings of the 2007 "State of the Science in Aging with Developmental Disabilities: Charting Lifespan Trajectories and Supportive Environments for Healthy Community Living" symposium. The overall goal of this symposium was to increase our underst...
journal_title:Disability and health journal
pub_type: 杂志文章,评审
doi:10.1016/j.dhjo.2008.04.001
更新日期:2008-07-01 00:00:00
abstract:BACKGROUND:Disability is not just a health problem. It is a wider phenomenon that reflects the gap between a person's capacities and their ability to fully perform the role demanded by society. Both personal and environmental factors are major contributors to disability. OBJECTIVE:We aimed to estimate the prevalence o...
journal_title:Disability and health journal
pub_type: 杂志文章
doi:10.1016/j.dhjo.2020.101043
更新日期:2020-11-19 00:00:00
abstract:BACKGROUND:Given the unpaid nature of the work, informal caregiving can create a financial burden for caregivers. Little has been done to identify specific predictors of experiencing financial burden. This study investigated demographic and health factors comparing caregivers who reported having or not having financial...
journal_title:Disability and health journal
pub_type: 杂志文章
doi:10.1016/j.dhjo.2011.08.001
更新日期:2011-10-01 00:00:00
abstract:BACKGROUND:Adults with long-term disability are living longer and may experience accelerated aging. More information is needed to understand the incidence of chronic comorbid medical conditions in this population. OBJECTIVE:To examine the incidence, prevalence, age of onset and predictors of five chronic conditions in...
journal_title:Disability and health journal
pub_type: 杂志文章
doi:10.1016/j.dhjo.2016.02.002
更新日期:2016-07-01 00:00:00
abstract:BACKGROUND:Women with disabilities experience higher rates of intimate partner violence (IPV) than the general population. Reproductive coercion, a type of intimate partner violence, is associated with an increased risk of unintended pregnancy (UIP), yet little is known about this relationship among women with disabili...
journal_title:Disability and health journal
pub_type: 杂志文章
doi:10.1016/j.dhjo.2019.100849
更新日期:2020-04-01 00:00:00
abstract:BACKGROUND:Emerging research demonstrates that light-intensity physical activity is favorably associated with numerous health outcomes among the general population, even independent of high-intensity physical activity. OBJECTIVE:To examine the association between accelerometer-assessed light-intensity physical activit...
journal_title:Disability and health journal
pub_type: 杂志文章
doi:10.1016/j.dhjo.2017.08.007
更新日期:2018-04-01 00:00:00
abstract::The World Health Organization in collaboration with the World Bank developed the World Report on Disability to inform governments of countries about the importance of disability, analyze scientific information, and provide recommendations for action at the national and international levels. The report is remarkably re...
journal_title:Disability and health journal
pub_type: 杂志文章,评审
doi:10.1016/j.dhjo.2011.05.001
更新日期:2011-07-01 00:00:00
abstract:BACKGROUND:Little is known about the availability and technical quality of online information related to the medical care of people with disability, despite the potential of this information to alter clinical interactions and treatment decisions. OBJECTIVES:This review examines the utility of internet search engines f...
journal_title:Disability and health journal
pub_type: 杂志文章
doi:10.1016/j.dhjo.2019.100877
更新日期:2020-04-01 00:00:00
abstract:BACKGROUND:The accessibility of public facilities for all is an issue increasingly gaining focus in policy debates, especially regarding the ageing population. OBJECTIVE:This paper describes a psychometric approach to the development of a new instrument for assessing the accessibility of public entrances. METHODS:Ite...
journal_title:Disability and health journal
pub_type: 杂志文章
doi:10.1016/j.dhjo.2019.02.007
更新日期:2019-07-01 00:00:00
abstract:BACKGROUND:Individuals with multiple sclerosis (MS) report fatigue, pain, depression, cognitive difficulties, and other symptoms. It is often difficult to compare symptoms across studies and populations because scales used to measure individual symptoms or quality of life indicators (QOLI) use different metrics and oft...
journal_title:Disability and health journal
pub_type: 杂志文章
doi:10.1016/j.dhjo.2017.04.008
更新日期:2018-01-01 00:00:00
abstract:BACKGROUND:Parents caring for a child with a rare disease report unmet needs, the origins of which are varied and complex. Few studies have systematically attempted to identify the supportive care needs of parents with a child with a rare disease comprehensively. We have used the widely accepted Supportive Care Needs F...
journal_title:Disability and health journal
pub_type: 杂志文章,评审
doi:10.1016/j.dhjo.2015.03.009
更新日期:2015-10-01 00:00:00
abstract:BACKGROUND:There is substantial evidence that pain intensity and sleep are related, with findings generally suggesting more support for the influence of sleep on pain intensity than vice versa. However, the strength and direction of the relationship has been found to vary among different populations, with few studies i...
journal_title:Disability and health journal
pub_type: 杂志文章
doi:10.1016/j.dhjo.2020.100908
更新日期:2020-07-01 00:00:00
abstract:BACKGROUND:the purpose of this study was to describe the distribution and relationship of 16 secondary medical problems, impairments, and participation limitations among adults with disabilities to demographic characteristics, self-reported health, satisfaction with life, and social participation. METHODS:data were an...
journal_title:Disability and health journal
pub_type: 杂志文章
doi:10.1016/j.dhjo.2007.11.006
更新日期:2008-01-01 00:00:00
abstract:BACKGROUND:Achieving and maintaining health are no less important to people with a disability than they are to anyone else; it is just typically more challenging. This report explores sport as a mechanism of health for people with a disability. The International Classification of Functioning, Disability and Health (ICF...
journal_title:Disability and health journal
pub_type: 杂志文章
doi:10.1016/j.dhjo.2009.01.002
更新日期:2009-07-01 00:00:00
abstract:BACKGROUND:There are growing numbers of adults aging with long-term mobility disabilities. Very little is known about the challenges this population experiences with everyday activities, and such challenges are likely to be greater and more complex than those of older adults who experience mobility declines later in li...
journal_title:Disability and health journal
pub_type: 杂志文章
doi:10.1016/j.dhjo.2020.100936
更新日期:2020-10-01 00:00:00