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Background Few U.S. studies have explored how children experience a parent's mobility disability and its effects on their daily lives. Objective We aimed to engage youth ages 13–17 who had at least one parent with mobility disability in describing their perceptions of their parent's disability and its consequences for their daily and family life. Methods Participants videoed and photographed their experiences following general guidelines from the researchers about topics of interest. Participants made their own choices about what they submitted. We used conventional content analysis to identify broad themes. Results The mean (standard deviation) age of the 10 participants was 15.2 (1.9) years; 5 were male; 9 participants were white. All 5 girls submitted multiple self-focused (selfie) videos made in their bedrooms; the 5 boys submitted more diverse data files. Several broad themes or topics emerged including: the effects of timing and trajectory of the parent's disability; perceptions of early maturity and responsibility; fears and frustrations relating to the parent's disability; support and emerging resilience; and sense of social justice. Participants generally felt their parents' disability made them become – compared to their peers – more mature, responsible, capable of performing household tasks, and aware of disability civil rights. Conclusions Participants raised many issues that health care providers should be aware of when youth have parents with mobility disability. A parent's mobility disability may be associated with resilience but also may pose challenges for youth. More research is needed to understand better adolescents' experiences and how clinicians might best assist these youth.

Caregiving roles of children18 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.

Background Despite limitations in their clinical content, claims data from administering health plans can provide important insights about service use and outcomes across large populations. However, using claims data to investigate care and outcomes among persons with disability is challenging because standard diagnosis, procedure, and medication codes provide little information about functional impairments or disability. Objective To explore whether supportive services claims provide useful information for predicting health care outcomes among persons with chronic disease and disability. Methods We used administrative data from a nonprofit, Massachusetts health plan, including members who were 21 years of age and older and dually-eligible for Medicare and Medicaid. With procedure codes, we identified long-term services and supports and ventilator and percutaneous endoscopic gastrostomy supplies. Data from calendar year 2015 were used to predict deaths and hospitalizations in 2016. Hazards ratio analyses predicted these outcomes adjusting for age, sex, disease burden, and amount of personal assistance and homemaker services used (proxy functional status measure). Results In bivariate analyses, all four predictors were statistically significant for both outcomes. In the full model, the proxy functional status measure did not statistically significantly predict hospitalization or death. After eliminating disease burden from the model, the proxy functional status measure became statistically significant, with hazards ratios of 1.006 for hospitalization (p = 0.0011) and 1.014 (p = Conclusions Claims for supportive services could be proxies for disability in analyses using administrative data, but additional research must demonstrate their usefulness for predicting health care outcomes.

Little is known about current societal attitudes toward women with significant mobility disability who are visibly pregnant.To use qualitative descriptive analysis methods to examine perceptions of women with significant mobility disability about how strangers reacted to their visible pregnancies.In late 2013, we conducted 2-h telephone interviews with 22 women with significant mobility difficulties who had delivered babies within the prior 10 years. The semi-structured, open-ended interview protocol addressed wide-ranging pregnancy-related topics, including statements from strangers. Most participants were recruited through social networks, coming from 17 states nationwide. We used NVivo to sort the texts for content analysis.The women's mean (standard deviation) age was 34.8 (5.3) years; most were white, well-educated, and higher income, although half had Medicaid during their pregnancies; and 18 used wheeled mobility aids. Eighteen women described memorable interactions with strangers relating to their pregnancies or newborn babies. Strangers' statements fell into six categories: (1) curious; (2) intrusively and persistently curious; (3) hostile, including concerns that taxpayers would end up supporting the mother and child; (4) questioning woman's competence as a potential parent; (5) oblivious, not recognizing visible pregnancy or motherhood; and (6) positive. Many women reported strangers asking how their pregnancy had happened. The women doubted that visibly pregnant women without disabilities evoke the same reactions from strangers.Women with mobility disability who are visibly pregnant may perceive reactions from strangers that appear intrusive. Planning ahead for handling such encounters could reduce the stresses of these interactions.

Background Although increasing numbers of reproductive-age U.S. women with chronic physical disabilities (CPD) are becoming pregnant, little is known about their general health or comorbid health conditions. Objectives To explore general health and comorbid health conditions among women with and without CPD by current pregnancy status. Methods We analyzed responses of 47,629 civilian, noninstitutionalized women ages 18–49 from the 2006–2011 National Health Interview Surveys. The survey asks about: various movement difficulties; selected adult health conditions; self-reported general health; and current pregnancy. We identified women with CPD using responses from 8 movement difficulty questions. Results 6043 (12.7%) women report CPD. Among nondisabled women, 3.8% report current pregnancy, as do 2.0% of women with CPD. Among currently pregnant women with CPD, 29.1% report fair or poor health, compared with only 3.2% of nondisabled pregnant women. Currently pregnant women both with and without CPD are significantly less likely to report coexisting health conditions than nonpregnant women. Nonetheless, among currently pregnant women with CPD, only 24.5% report no coexisting conditions, while 28.7% report 1, 22.8% report 2, 13.2% report 3, and 10.8% report 4–6 health conditions. In a multivariable regression controlling for age category, health status, and health conditions, CPD is not statistically significantly associated with current pregnancy. Conclusions According to national survey data, it appears that pregnant women with CPD may have a complex mix of health problems and often experience fair or poor health. Better understanding the obstetrical and subspecialty needs of these women with multimorbidities requires additional investigation.