As interest in autism in adulthood grows, so does the need for methods to promote the inclusion of autistic adults in research. Our objective was to create practice-based guidelines for the inclusion ...of autistic adults, both as research team members and as study participants. We conducted an institutional ethnography of three closely related research partnerships that used participatory methods with autistic adults over the years 2006–2018. We used an iterative approach which combined discussions with community and academic partners and artifact review. Guidelines to promote the inclusion of autistic adults as co-researchers focus on being transparent about partnership goals, clearly defining roles and choosing partners, creating processes for effective communication and power-sharing, building and maintaining trust, disseminating findings, encouraging community capacitation, and fairly compensating partners. Guidelines to promote the inclusion of autistic adults as study participants focus on maximizing autonomy and inclusion, creating an accessible consent process, offering multiple modes of participation, adapting survey instruments for use with autistic adults, creating accessible qualitative interview guides, and handling data from proxy reporters. Although these practice-based guidelines may not apply to all research teams, we hope that other researchers can capitalize on these practical lessons when including autistic adults in research.
ABSTRACT
BACKGROUND
Little is known about the healthcare experiences of adults on the autism spectrum. Moreover, autistic adults have rarely been included as partners in autism research.
OBJECTIVE
To ...compare the healthcare experiences of autistic and non-autistic adults via an online survey.
METHODS
We used a community-based participatory research (CBPR) approach to adapt survey instruments to be accessible to autistic adults and to conduct an online cross-sectional survey. We assessed preliminary psychometric data on the adapted scales. We used multivariate analyses to compare healthcare experiences of autistic and non-autistic participants.
RESULTS
Four hundred and thirty-seven participants completed the survey (209 autistic, 228 non-autistic). All adapted scales had good to excellent internal consistency reliability (alpha 0.82–0.92) and strong construct validity. In multivariate analyses, after adjustment for demographic characteristics, health insurance, and overall health status, autistic adults reported lower satisfaction with patient-provider communication (beta coefficient −1.9, CI −2.9 to −0.9), general healthcare self-efficacy (beta coefficient −11.9, CI −14.0 to −8.6), and chronic condition self-efficacy (beta coefficient −4.5, CI −7.5 to −1.6); higher odds of unmet healthcare needs related to physical health (OR 1.9 CI 1.1–3.4), mental health (OR 2.2, CI 1.3–3.7), and prescription medications (OR 2.8, CI 2.2–7.5); lower self-reported rates of tetanus vaccination (OR 0.5, CI 0.3–0.9) and Papanicolaou smears (OR 0.5, CI 0.2–0.9); and greater odds of using the emergency department (OR 2.1, CI 1.8–3.8).
CONCLUSION
A CBPR approach may facilitate the inclusion of people with disabilities in research by increasing researchers’ ability to create accessible data collection instruments. Autistic adults who use the Internet report experiencing significant healthcare disparities. Efforts are needed to improve the healthcare of autistic individuals, including individuals who may be potentially perceived as having fewer disability-related needs.
The SARS-COV-2 pandemic rapidly shifted dynamics around hospitalization for many communities. This study aimed to evaluate how the pandemic altered the experience of healthcare, acute illness, and ...care transitions among hospitalized patients with substance use disorder (SUD).
We performed a qualitative study at an academic medical center in Portland, Oregon, in Spring 2020. We conducted semi-structured interviews, and conducted a thematic analysis, using an inductive approach, at a semantic level.
We enrolled 27 participants, and identified four main themes: 1) shuttered community resources threatened patients' basic survival adaptations; 2) changes in outpatient care increased reliance on hospitals as safety nets; 3) hospital policy changes made staying in the hospital harder than usual; and, 4) care transitions out of the hospital were highly uncertain.
Hospitalized adults with SUD were further marginalized during the SARS-COV-2 pandemic. Systems must address the needs of marginalized patients in future disruptive events.
Primary care for adults on the autism spectrum Nicolaidis, Christina; Kripke, Clarissa Calliope; Raymaker, Dora
Medical clinics of North America/The Medical clinics of North America,
09/2014, Letnik:
98, Številka:
5
Journal Article
Recenzirano
Odprti dostop
Autism spectrum disorder (ASD) is defined by differences in social communication and restricted, repetitive patterns of behavior, interests, or activities. Skills and challenges can change depending ...on environmental stimuli, supports, and stressors. Quality of life can be improved by the use of accommodations, assistive technologies, therapies to improve adaptive function or communication, caregiver training, acceptance, access, and inclusion. This article focuses on the identification of ASD in adults, referrals for services, the recognition of associated conditions, strategies and accommodations to facilitate effective primary care services, and ethical issues related to caring for autistic adults.
Latino children are diagnosed with autism spectrum disorders (ASDs) at older ages and at the point of more severe symptoms. We sought to qualitatively describe community, family, and health care ...system barriers to ASD diagnosis in Latino children.
Five focus groups and 4 qualitative interviews were conducted with 33 parents of Latino children previously diagnosed with an ASD. Participants described Latino community perceptions of autism and barriers they experienced during the diagnostic process. Sessions were audiorecorded and transcribed. Transcripts were coded by 2 researchers, and data were analyzed using thematic analysis.
Parents reported low levels of ASD information and high levels of mental health and disability stigma in the Latino community. Parents had poor access to care as a result of poverty, limited English proficiency, and lack of empowerment to take advantage of services. Providers sometimes dismissed parents' concerns. The ASD diagnostic process itself was slow, inconvenient, confusing, and uncomfortable for the child. These factors led many parents to normalize their child's early behaviors, deny that a problem existed, and lose trust in the medical system.
Additional educational outreach to Latino families, destigmatization of ASD, streamlining the ASD diagnostic process, and providing additional support to Latino parents of at-risk children may decrease delays in ASD diagnosis among Latino children.
We examined associations of childhood physical and sexual abuse with risk of intimate partner violence (IPV). We also evaluated the extent to which childhood abuse was associated with self-reported ...general health status and symptoms of antepartum depression in a cohort of pregnant Peruvian women.
In-person interviews were conducted to collect information regarding history of childhood abuse and IPV from 1,521 women during early pregnancy. Antepartum depressive symptomatology was evaluated using the Patient Health Questionnaire-9. Multivariable logistic regression procedures were used to estimate adjusted odds ratios (aOR) and 95% confidence intervals (95%CI).
Any childhood abuse was associated with 2.2-fold increased odds of lifetime IPV (95%CI: 1.72-2.83). Compared with women who reported no childhood abuse, those who reported both, childhood physical and sexual abuse had a 7.14-fold lifetime risk of physical and sexual IPV (95%CI: 4.15-12.26). The odds of experiencing physical and sexual abuse by an intimate partner in the past year was 3.33-fold higher among women with a history of childhood physical and sexual abuse as compared to women who were not abused as children (95%CI 1.60-6.89). Childhood abuse was associated with higher odds of self-reported poor health status during early pregnancy (aOR = 1.32, 95%CI: 1.04-1.68) and with symptoms of antepartum depression (aOR = 2.07, 95%CI: 1.58-2.71).
These data indicate that childhood sexual and physical abuse is associated with IPV, poor general health and depressive symptoms in early pregnancy. The high prevalence of childhood trauma and its enduring effects of on women's health warrant concerted global health efforts in preventing violence.
Autistic people often have poor outcomes over the life course, including in health, education, employment, and community inclusion. Many professionals working with Autistic adults in research, ...clinical, and educational settings devote their careers to trying to improve such outcomes. However, we maintain that real progress cannot happen without a fundamental mindshift. The status quo for professionals is to view autism as an illness. Instead, the neurodiversity movement encourages us to value and embrace autism as an aspect of human diversity and asks us to view Autistic people as a marginalized group that experiences significant disparities. While some professionals may be adopting language and concepts from the neurodiversity movement, we argue that making this mindshift fundamentally changes our practice across research, clinical, and educational settings. In this perspective, we call on professionals to embrace this mindshift to reduce discrimination and stigma, halt the spread of harmful ideologies, and help Autistic adults live fulfilling lives.
How we frame our thoughts about chronic opioid therapy greatly influences our ability to practice patient‐centered care. Even providers who strive to be nonjudgmental may approach clinical ...decision‐making about opioids by considering if the pain is real or they can trust the patient. Not only does this framework potentially lead to poor or unshared decision‐making, it likely adds to provider and patient discomfort by placing the provider in the position of a police officer or a judge. Similarly, providers often find themselves making deals with patients using a positional bargaining approach. Even if a compromise is reached, this framework can potentially inadvertently weaken the therapeutic relationship by encouraging the idea that the patient and provider have opposing goals. Reframing the issue can allow the provider to be in a more therapeutic role. As recommended in the American Pain Society/American Academy of Pain Medicine guidelines, providers should decide whether the benefits of opioid therapy are likely to outweigh the harms for a specific patient (or sometimes, for society) at a specific time. This article discusses how providers can use a benefit‐to‐harm framework to make and communicate decisions about the initiation, continuation, and discontinuation of opioids for managing chronic nonmalignant pain. Such an approach focuses decisions and discussions on judging the treatment, not the patient. It allows the provider and the patient to ally together and make shared decisions regarding a common goal. Moving to a risk‐benefit framework may allow providers to provide more patient‐centered care, while also increasing provider and patient comfort with adequately monitoring for harm.
Childhood Abuse and Early Menarche Among Peruvian Women Barrios, Yasmin V., M.P.H; Sanchez, Sixto E., M.D., M.P.H; Nicolaidis, Christina, M.D., M.P.H ...
Journal of adolescent health,
02/2015, Letnik:
56, Številka:
2
Journal Article
Recenzirano
Odprti dostop
Abstract Purpose Childhood abuse has been associated with age of menarche in some studies, but not all, and few have assessed the independent associations of sexual and physical abuse with early ...menarche. We examined the association between childhood abuse and early menarche among pregnant women in Lima, Peru. Methods Multinomial logistic regression procedures were used to estimate odds ratios (OR) and 95% confidence intervals (CIs) for early menarche (≤11 years) in relation to any physical or sexual childhood abuse, physical abuse only, sexual abuse only, and both physical and sexual abuse in a cohort of 1,499 pregnant (first trimester) women. Results Approximately 69% of participants reported experiencing physical or sexual abuse in childhood. The frequencies of physical abuse only, sexual abuse only, and both physical and sexual abuse were 37.4%, 7.7%, and 24.5%, respectively. Compared with women who reported no childhood abuse, those who reported any childhood abuse had a 1.38-fold increased odds of early menarche (95% CI, 1.01–1.87). Compared with no abuse, the odds of early menarche was 1.60-fold among women with childhood sexual abuse only (OR, 1.60; 95% CI, .93–2.74) and 1.56-fold for those with both physical and sexual abuse (OR, 1.56; 95% CI, 1.07–2.25) during childhood. Isolated physical abuse was weakly associated with early menarche (OR, 1.23; 95% CI, .87–1.74). There was no clear evidence of association of childhood abuse with late menarche (≥15 years). Conclusions Childhood abuse, particularly joint physical and sexual abuse, is associated with early menarche. Our findings add to an expanding body of studies documenting the enduring adverse health consequences of childhood abuse.
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