A Multilevel Primary Care Intervention to Improve Follow-Up of Overdue Abnormal Cancer Screening Test Results: A Cluster Randomized Clinical Trial.

Importance: Realizing the benefits of cancer screening requires testing of eligible individuals and processes to ensure follow-up of abnormal results. Objective: To test interventions to improve timely follow-up of overdue abnormal breast, cervical, colorectal, and lung cancer screening results. Design, Setting, and Participants: Pragmatic, cluster randomized clinical trial conducted at 44 primary care practices within 3 health networks in the US enrolling patients with at least 1 abnormal cancer screening test result not yet followed up between August 24, 2020, and December 13, 2021. Intervention: Automated algorithms developed using data from electronic health records (EHRs) recommended follow-up actions and times for abnormal screening results. Primary care practices were randomized in a 1:1:1:1 ratio to (1) usual care, (2) EHR reminders, (3) EHR reminders and outreach (a patient letter was sent at week 2 and a phone call at week 4), or (4) EHR reminders, outreach, and navigation (a patient letter was sent at week 2 and a navigator outreach phone call at week 4). Patients, physicians, and practices were unblinded to treatment assignment. Main Outcomes and Measures: The primary outcome was completion of recommended follow-up within 120 days of study enrollment. The secondary outcomes included completion of recommended follow-up within 240 days of enrollment and completion of recommended follow-up within 120 days and 240 days for specific cancer types and levels of risk. Results: Among 11 980 patients (median age, 60 years [IQR, 52-69 years]; 64.8% were women; 83.3% were White; and 15.4% were insured through Medicaid) with an abnormal cancer screening test result for colorectal cancer (8245 patients [69%]), cervical cancer (2596 patients [22%]), breast cancer (1005 patients [8%]), or lung cancer (134 patients [1%]) and abnormal test results categorized as low risk (6082 patients [51%]), medium risk (3712 patients [31%]), or high risk (2186 patients [18%]), the adjusted proportion who completed recommended follow-up within 120 days was 31.4% in the EHR reminders, outreach, and navigation group (n = 3455), 31.0% in the EHR reminders and outreach group (n = 2569), 22.7% in the EHR reminders group (n = 3254), and 22.9% in the usual care group (n = 2702) (adjusted absolute difference for comparison of EHR reminders, outreach, and navigation group vs usual care, 8.5% [95% CI, 4.8%-12.0%], P < .001). The secondary outcomes showed similar results for completion of recommended follow-up within 240 days and by subgroups for cancer type and level of risk for the abnormal screening result. Conclusions and Relevance: A multilevel primary care intervention that included EHR reminders and patient outreach with or without patient navigation improved timely follow-up of overdue abnormal cancer screening test results for breast, cervical, colorectal, and lung cancer. Trial Registration: ClinicalTrials.gov Identifier: NCT03979495.

Labor, delivery, and anesthesia experiences of women with physical disability.

BACKGROUND: Although many women with physical disabilities report poor quality reproductive health care, little research has addressed labor, delivery, and anesthesia experiences of these women. This study was conducted to explore these experiences in women with significant mobility disabilities. METHODS: A qualitative descriptive study was conducted with 22 women from the United States who had delivered newborns within the prior 10 years. All had significant mobility disabilities. Two-hour, in-depth telephone interviews were conducted using a semistructured, open-ended interview protocol, which addressed many topics, including labor, delivery, and anesthesia experiences. We recruited most participants through social networks, interviewing women from 17 states. Conventional content analysis, facilitated by NVivo software, was used to identify major themes. RESULTS: The mean age of women was 34.8 ± 5.3 years. Most women were white, college educated, and used wheeled mobility aids. Four key themes emerged from participants' narratives of laboring and giving birth with a disability. These included women's preferences for type of delivery, clinicians and some women expected no labor pain, fears prompting active advocacy, and positive experiences. As participants discussed their experiences with anesthesia, four additional themes were identified: importance of consultation with the anesthesia team, decisions about epidural/spinal vs general anesthesia, failed epidural with repeated efforts, and fear of injury related to anesthesia. CONCLUSIONS: The responses of women in this study suggest that there is need to make intrapartum care better for women with physical disabilities and to improve their experiences with labor, birth, and obstetric anesthesia care.

Mothers With Physical Disability: Child Care Adaptations at Home.

OBJECTIVE: This study describes how women with physical disability experience caregiving for a new infant and how they adapt their home environment and care tasks. METHOD: In 2013, we conducted 2-hr telephone interviews with 22 women with significant physical disability who had delivered babies within the previous 10 yr. The semistructured, open-ended interview protocol addressed wide-ranging pregnancy-related topics. NVivo was used to sort the texts for content analysis. RESULTS: Night care, bathing, and carrying the baby were identified as the biggest challenges. Typical adaptations (with and without occupational therapy consultation) included use of a wrap for carrying the infant, furniture adaptations for mothers using wheelchairs, and assistance from caregivers. CONCLUSION: Women with physical disability can be fully capable of caring for an infant and can find ways to adapt their environment. Further research may determine the role of occupation therapy.

Effects of disability on pregnancy experiences among women with impaired mobility.

OBJECTIVE: Little is known about how functional impairments might affect the pregnancies of women with mobility disability. We aimed to explore complications that arise during pregnancy that are specifically related to physical functional impairments of women with significant mobility disabilities. DESIGN: Qualitative descriptive analysis. SETTING: Telephone interviews with women from 17 USA states. SAMPLE: 22 women with significant mobility difficulties who had delivered babies within the prior 10 years; most participants were recruited through social networks. METHODS: We conducted 2-h, in-depth telephone interviews using a semi-structured, open-ended interview protocol. We used NVIVO software to sort interview transcript texts for conventional content analyses. MAIN OUTCOME MEASURES: Functional impairment-related complications during pregnancy. RESULTS: The women's mean (standard deviation) age was 34.8 (5.3) years. Most were white, well-educated, and higher income; eight women had spinal cord injuries, four cerebral palsy, and 10 had other conditions; 18 used wheeled mobility aids; and 14 had cesarean deliveries (eight elective). Impairment-related complications during pregnancy included: falls; urinary tract and bladder problems; wheelchair fit and stability problems that reduced mobility and compromised safety; significant shortness of breath, sometimes requiring respiratory support; increased spasticity; bowel management difficulties; and skin integrity problems (this was rare, but many women greatly increased skin monitoring during pregnancy to prevent pressure ulcers). CONCLUSIONS: In addition to other pregnancy-associated health risks, women with mobility disabilities appear to experience problems relating to their functional impairments. Pre-conception planning and in-depth discussions during early pregnancy could potentially assist women with mobility disabilities to anticipate and address these difficulties.

Health risk factors and mental health among US women with and without chronic physical disabilities by whether women are currently pregnant.

Growing numbers of reproductive-age US women with chronic physical disabilities (CPD) raise questions about their pregnancy experiences. Little is known about the health risks of women with versus without CPD by current pregnancy status. We analyzed cross-sectional, nationally-representative National Health Interview Survey data from 2006 to 2011, which includes 47,629 civilian, noninstitutionalized women ages 18-49. NHIS asks about specified movement difficulties, current pregnancy, and various health and health risk indicators, including tobacco use and body mass index (BMI). We used responses from eight movement difficulty and other questions to identify women with mobility difficulties caused by chronic physical health conditions. Across all women regardless of CPD, women reporting current pregnancy are significantly less likely to currently smoke tobacco and report certain mental health problems. Among currently pregnant women only, women with CPD are more likely to smoke cigarettes every day (12.2 %) versus 6.3 % for pregnant women without CPD (p ≤ 0.001). Among currently pregnant women, 17.7 % of women with CPD have BMIs in the non-overweight range, compared with 40.1 % of women without CPD (p ≤ 0.0001). Currently pregnant women with CPD are significantly more likely to report having any mental health problems, 66.6 % compared with 29.7 % among women without CPD (p ≤ 0.0001). For all women, currently pregnant women appear to have fewer health risks and mental health concerns than nonpregnant women. Among pregnant women, women with CPD have higher rates than other women of health risk factors that could affect maternal and infant outcomes.

Conditions causing disability and current pregnancy among US women with chronic physical disabilities.

BACKGROUND: Growing numbers of reproductive-age US women with chronic physical disabilities (CPD) are becoming pregnant. Little is known about the health conditions causing their CPD. OBJECTIVES: To identify health conditions causing CPD among reproductive-age women and specifically among currently pregnant women. RESEARCH DESIGN: Cross-sectional, nationally representative National Health Interview Survey data from 2006 to 2011. SUBJECTS: A total of 6043 civilian, noninstitutionalized women aged 18-49 with CPD. MEASURES: National Health Interview Survey asks about various movement difficulties and their underlying causes and about current pregnancy. We used responses from 8 movement difficulty and other questions to identify women with mobility difficulties caused by chronic physical health conditions. RESULTS: Among women with CPD, 2.0% report current pregnancy, with pregnancy rates falling monotonically as CPD severity rises. Regardless of pregnancy, 20.8% report 2 causes for their CPD, and 12.7% report 3+ causes; the most common causes are arthritis, back or neck problems, and other musculoskeletal conditions. Compared with nonpregnant women, currently pregnant women report fewer causal conditions: 15.8% report 2 causes and 8.0% 3+ causes; back or neck problems are reported most frequently, followed by musculoskeletal problems and arthritis. Multivariable logistic regression analyses predicting current pregnancy controlling for age category and individual common causes of CPD found that no cause was significantly associated with higher or lower adjusted odds of pregnancy. CONCLUSION: Almost one quarter of currently pregnant women with CPD report more than one cause for their disability. Further research will needed to examine how obstetrical needs vary for depending on the cause of a pregnant woman's disability.

Prevalence of current pregnancy among US women with and without chronic physical disabilities.

BACKGROUND: The number of US women of childbearing age who have chronic physical disabilities (CPD) is increasing. However, little is known about their reproductive experiences. Historically, women with physical disabilities have confronted stigmatized attitudes about becoming pregnant. OBJECTIVES: To explore the national prevalence of current pregnancy among women with and without CPD; examine differences in current pregnancy prevalence between these 2 groups of women. RESEARCH DESIGN: Bivariable and multivariable analyses of cross-sectional, nationally representative National Health Interview Survey data from 2006 to 2011. SUBJECTS: Forty-seven thousand six hundred twenty-nine civilian, noninstitutionalized women aged 18-49 years. MEASURES: National Health Interview Survey asks women ages 18-49 if they are currently pregnant; it also asks about various movement difficulties. We used responses from 8 movement difficulty and other questions to identify women with CPD. RESULTS: Six thousand forty-three (12.7%) sampled women report CPD. Compared with other women, women with CPD are significantly: older; more likely to be black and less likely to be Asian or Hispanic; more likely to be divorced or separated; more likely to have less than a high school education; less likely to be employed; and have much lower incomes. Across all women, 3.5% report being currently pregnant: 3.8% of women without CPD and 2.0% with CPD. Controlling for sociodemographic factors, the adjusted odds ratio (95% confidence interval) of current pregnancy is 0.83 (95% confidence interval, 0.65-1.05; P=0.12) for women with CPD compared with nondisabled women. CONCLUSIONS: Women with CPD do become pregnant, and their numbers will likely grow. Obstetrical practitioners therefore require training about the special needs of these women.

Patient perceptions of in-home urgent care via mobile integrated health.

OBJECTIVES: Emergency department (ED) crowding poses a severe public health threat, and identifying acceptable means of treating medical conditions in alternative sites of care is imperative. We compared patients' experiences with in-home urgent care via mobile integrated health (MIH) vs urgent care provided in EDs. STUDY DESIGN: Survey, completed on paper, online, or by telephone. We surveyed all patients who received MIH care for an urgent health problem (n = 443) and consecutive patients who visited EDs for urgent care (n = 1436). METHODS: Study participants were members of a managed care plan who were dually eligible for Medicare and Medicaid, 21 years or older, and treated either by MIH or in an ED for nonemergent conditions around Boston, Massachusetts, between February 2017 and June 2018. The survey assessed patients' perceptions of their urgent care experiences. RESULTS: A total of 206 patients treated by community paramedics and 718 patients treated in EDs completed surveys (estimated 66% and 62% response rates, respectively). Patients treated by MIH perceived higher-quality care, more frequently reporting "excellent" (54.7%) or "very good" (32.4%) care compared with ED patients (40.7% and 24.3%, respectively; P < .0001), and were significantly more likely to report that decisions made about their care were "definitely right" compared with patients treated in the ED (66.1% vs 55.6%; P = .02). CONCLUSIONS: Patients appear satisfied with receiving paramedic-delivered urgent care in their homes rather than EDs, perceiving higher-quality care. This suggests that in-home urgent care via MIH may be acceptable for patients with nonemergent conditions.

Leveraging the Clinical Timepoints in Lung Cancer Screening to Engage Individuals in Tobacco Treatment.

The US Preventive Services Task Force recommends lung cancer screening (LCS) to promote early lung cancer detection, and tobacco cessation services are strongly recommended in adjunct. Screen ASSIST (NCT03611881) is a randomized factorial trial to ascertain the best tobacco treatment intervention for smokers undergoing LCS; trial outreach is conducted during 3 recruitment points (RPs): when LCS is ordered (RP1), at screening (RP2), and following results (RP3). Among 177 enrollees enrolled from April 2019 to March 2020, 31.6% enrolled at RP1, 13.0% at RP2, and 55.4% at RP3. The average number of enrollees (per 1000 recruitment days) was 2.26 in RP1, 3.37 in RP2, and 1.04 in RP3. LCS provides an opportunity to offer tobacco treatment at multiple clinical timepoints. Repeated and proactive outreach throughout the LCS experience was beneficial to enrolling patients in tobacco cessation services.

Primary Care Practitioner Perceptions on the Follow-up of Abnormal Cancer Screening Test Results.

Importance: Health care systems focus on delivering routine cancer screening to eligible individuals, yet little is known about the perceptions of primary care practitioners (PCPs) about barriers to timely follow-up of abnormal results. Objective: To describe PCP perceptions about factors associated with the follow-up of abnormal breast, cervical, colorectal, and lung cancer screening test results. Design, Setting, and Participants: Survey study of PCPs from 3 primary care practice networks in New England between February and October 2020, prior to participating in a randomized clinical trial to improve follow-up of abnormal cancer screening test results. Participants were physicians and advanced practice clinicians from participating practices. Main Outcomes and Measures: Self-reported process, attitudes, knowledge, and satisfaction about the follow-up of abnormal cancer screening test results. Results: Overall, 275 (56.7%) PCPs completed the survey (range by site, 34.9%-71.9%) with more female PCPs (61.8% [170 of 275]) and general internists (73.1% [201 of 275]); overall, 28,7% (79 of 275) were aged 40 to 49 years. Most PCPs felt responsible for managing abnormal cancer screening test results with the specific cancer type being the best factor (range, 63.6% [175 of 275] for breast to 81.1% [223 of 275] for lung; P < .001). The PCPs reported limited support for following up on overdue abnormal cancer screening test results. Standard processes such as automated reports, reminder letters, or outreach workers were infrequently reported. Major barriers to follow-up of abnormal cancer screening test results across all cancer types included limited electronic health record tools (range, 28.5% [75 of 263]-36.5%[96 of 263]), whereas 50% of PCPs felt that there were major social barriers to receiving care for abnormal cancer screening test results for colorectal cancer. Fewer than half reported being very satisfied with the process of managing abnormal cancer screening test results, with satisfaction being greatest for breast cancer (46.9% [127 of 271]) and lowest for cervical (21.8% [59 of 271]) and lung cancer (22.4% [60 of 268]). Conclusions and Relevance: In this survey study of PCPs, important deficiencies in systems for managing abnormal cancer screening test results were reported. These findings suggest a need for comprehensive organ-agnostic systems to promote timely follow-up of abnormal cancer screening results using a primary care-focused approach across the range of cancer screening tests.

Multilevel Follow-up of Cancer Screening (mFOCUS): Protocol for a multilevel intervention to improve the follow-up of abnormal cancer screening test results.

INTRODUCTION: While substantial attention is focused on the delivery of routine preventive cancer screening, less attention has been paid to systematically ensuring that there is timely follow-up of abnormal screening test results. Barriers to completion of timely follow-up occur at the patient, provider, care team and system levels. METHODS: In this pragmatic cluster randomized controlled trial, primary care sites in three networks are randomized to one of four arms: (1) standard care, (2) "visit-based" reminders that appear in a patient's electronic health record (EHR) when it is accessed by either patient or providers (3) visit based reminders with population health outreach, and (4) visit based reminders, population health outreach, and patient navigation with systematic screening and referral to address social barriers to care. Eligible patients in participating practices are those overdue for follow-up of an abnormal results on breast, cervical, colorectal and lung cancer screening tests. RESULTS: The primary outcome is whether an individual receives follow-up, specific to the organ type and screening abnormality, within 120 days of becoming eligible for the trial. Secondary outcomes assess the effect of intervention components on the patient and provider experience of obtaining follow-up care and the delivery of the intervention components. CONCLUSIONS: This trial will provide evidence for the role of a multilevel intervention on improving the follow-up of abnormal cancer screening test results. We will also specifically assess the relative impact of the components of the intervention, compared to standard care. TRIAL REGISTRATION: ClinicalTrials.gov NCT03979495.

Correction to: Behavioral Health Emergencies Encountered by Community Paramedics: Lessons from the Field and Opportunities for Skills Advancement.

Due to a production error, this article was inadvertently published without an abstract.

Behavioral Health Emergencies Encountered by Community Paramedics: Lessons from the Field and Opportunities for Skills Advancement.

Note: This statement is mandatory. Please provide.

Using claims for long-term services and support to predict mortality and hospital use.

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 = <0.0001) for death. 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.

Making Triage Decisions for the Acute Community Care Program: Paramedics Caring for Urgent Health Problems in Patients' Homes.

The Acute Community Care Program (ACCP) initiative sends specially trained paramedics to evaluate and treat patients with urgent care problems in their residences during evening hours. ACCP safety depends on making appropriate triage decisions from patients' reports during phone calls about whether paramedics could care for patients' urgent needs or whether they require emergency department (ED) services. Furthermore, after ACCP paramedics are on scene, patients may nonetheless need ED care if their urgent health problems are not adequately treated by the paramedic's interventions. To train clinical staff participating in all aspects of ACCP, including these triage decisions, ACCP clinical leaders developed brief vignettes: 27 represented initial ACCP triage decisions and 10 the subsequent decision to send patients to EDs. This report describes findings from an online survey completed by 24 clinical staff involved with ACCP triage. Clinical vignettes could be useful for staff training and quality control in such paramedic initiatives.

Views of teenage children about the effects of a Parent's mobility disability.

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.

Early experiences with the Acute Community Care Program in eastern Massachusetts.

OBJECTIVES: Emergency departments (EDs) frequently provide care for nonemergent health conditions outside of usual physician office hours. A nonprofit, fully integrated health insurer/care delivery system that enrolls socioeconomically disadvantaged adults with complex health needs partnered with an ambulance service provider to offer after-hours urgent care by specially trained and equipped paramedics in patients' residences. The Massachusetts Department of Public Health gave this initiative, the Acute Community Care Program (ACCP), a Special Project Waiver. We report results from its first 2 years of operation. STUDY DESIGN: This was an observational study. METHODS: We used descriptive methods to analyze administrative claims, financial and enrollment records from the health insurer, information from service logs submitted by ACCP paramedics, and self-reported patient perceptions from telephone surveys of ACCP recipients. RESULTS: ACCP averaged only about 1 call per day in its first year, growing to about 2 visits daily in year 2. About 15% to 20% of ACCP patients ultimately were transported to EDs and between 7.2% and 17.1% were hospitalized within 1 day of their ACCP visits. No unexpected deaths occurred within 72 hours of ACCP visits. Paramedics stayed on scene approximately 80 minutes on average. About 70% of patients thought that ACCP spared them an ED visit; 90% or more were willing to receive future ACCP care. Average costs per ACCP visit fell from $844 in year 1 to $537 in year 2 as volumes increased. CONCLUSIONS: This study using observational data provides preliminary evidence suggesting that ACCP might offer an alternative to EDs for after-hours urgent care. More rigorous evaluation is required to assess ACCP's effectiveness.

Recommendations about Pregnancy from Women with Mobility Disability to Their Peers.

BACKGROUND: Although growing numbers of women with mobility disability are becoming pregnant and desiring motherhood, relatively little is known about their pregnancy experiences or what they might recommend to other women with mobility disability contemplating pregnancy. METHODS: Using a semistructured, open-ended interview protocol, we conducted 2-hour telephone interviews with 22 women who had a significant mobility disability before becoming pregnant and had delivered babies within the prior 10 years. We recruited most interviewees through online social networks. We used NVivo software to sort interview transcript texts and performed conventional content analyses to identify major themes. RESULTS: Participants' mean ± standard deviation age was 34.8 ± 5.3 years; most were White, well-educated, and middle income and 18 used wheeled mobility aids. Recommendations for other women with mobility disability coalesced around five themes: recognizing the possibility of giving birth, advocacy and support, being informed, approaches toward obstetrical practitioners, and managing fears about losing custody of their child. Lacking information about what to expect during their pregnancy was a significant problem. Women got information about pregnancy from diverse sources, but questions arose about accuracy and relevance of this information to individual circumstances. Women urged their peers to advocate for their preferences and needs with obstetrical practitioners. CONCLUSIONS: Women with mobility disability who had delivered babies offered constructive advice for their peers who desire pregnancy. Increasing availability of accurate and relevant information about pregnancy among women with mobility disability is critically important, as is training obstetrical practitioners to provide patient-centered care to these women during pregnancy.

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

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.