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2.
Hastings Cent Rep ; 53(3): 15-24, 2023 05.
Article in English | MEDLINE | ID: mdl-37285414

ABSTRACT

Gender-affirming care is almost exclusively discussed in connection with transgender medicine. However, this article argues that such care predominates among cisgender patients, people whose gender identity matches their sex assigned at birth. To advance this argument, we trace historical shifts in transgender medicine since the 1950s to identify central components of "gender-affirming care" that distinguish it from previous therapeutic models, such as "sex reassignment." Next, we sketch two historical cases-reconstructive mammoplasty and testicular implants-to show how cisgender patients offered justifications grounded in authenticity and gender affirmation that closely mirror rationales supporting gender-affirming care for transgender people. The comparison exposes significant disparities in contemporary health policy regarding care for cis and trans patients. We consider two possible objections to the analogy we draw, but ultimately argue that these disparities are rooted in "trans exceptionalism" that produces demonstrable harm..


Subject(s)
Transgender Persons , Transsexualism , Infant, Newborn , Humans , Male , Female , Gender Identity , Transsexualism/surgery , Delivery of Health Care
3.
Int J Drug Policy ; 108: 103806, 2022 10.
Article in English | MEDLINE | ID: mdl-35907372

ABSTRACT

BACKGROUND: Over the past decade, states have passed several laws on prenatal drug use, including "maltreatment laws" deeming prenatal drug use child maltreatment, "reporting laws" requiring providers to report prenatal drug use to Child Protective Services (CPS) and "criminalization laws" that criminalize prenatal drug use. METHOD: We examined the association between a 2012 Utah maltreatment law, a 2013 Alabama maltreatment and criminalization law, and a 2014 Maryland reporting law on the rate of infant CPS reports using 2010-2017 National Child Abuse and Neglect Data System data. We conducted an event study comparing CPS reporting pre/post law in each treatment state with reporting in a pool of control states over the same period. Regression models included state and year fixed effects and state-level demographics. We triangulated quantitative results with qualitative interviews of 11 state leaders whose professional responsibilities included implementation of the state law. RESULTS: We found no association between Alabama's simultaneous maltreatment and criminalization laws and infant reporting. Maryland's reporting law (28.2 fewer reports per 1000 infants, 95%CI: [-42.9, -13.6], 4-years post-law) and Utah's maltreatment laws (31.0 fewer CPS reports per 1000 infants, 95%CI: [-61.2, -0.8], 6-years post-law) were associated with declines in infant CPS reports. Qualitative results suggest that the reduced reporting associated with Maryland's reporting and Utah's maltreatment laws may be due to increased perceived stigma resulting from the law, and health providers' distrust of CPS and/or confusion about reporting to CPS. CONCLUSION: Future research should characterize differential policy implementation across states and counties and identify policy impacts on treatment seeking behavior.


Subject(s)
Child Protective Services , Substance-Related Disorders , Alabama , Child , Child Welfare , Female , Humans , Infant , Maryland/epidemiology , Pregnancy , Utah/epidemiology
4.
J Am Med Inform Assoc ; 29(2): 271-284, 2022 01 12.
Article in English | MEDLINE | ID: mdl-34486655

ABSTRACT

There are over 1 million transgender people living in the United States, and 33% report negative experiences with a healthcare provider, many of which are connected to data representation in electronic health records (EHRs). We present recommendations and common pitfalls involving sex- and gender-related data collection in EHRs. Our recommendations leverage the needs of patients, medical providers, and researchers to optimize both individual patient experiences and the efficacy and reproducibility of EHR population-based studies. We also briefly discuss adequate additions to the EHR considering name and pronoun usage. We add the disclaimer that these questions are more complex than commonly assumed. We conclude that collaborations between local transgender and gender-diverse persons and medical providers as well as open inclusion of transgender and gender-diverse individuals on terminology and standards boards is crucial to shifting the paradigm in transgender and gender-diverse health.


Subject(s)
Transgender Persons , Data Collection , Electronic Health Records , Gender Identity , Humans , Reproducibility of Results , United States
5.
J Pain Symptom Manage ; 62(6): 1135-1144, 2021 12.
Article in English | MEDLINE | ID: mdl-34153461

ABSTRACT

CONTEXT: Many children with advanced cancer are not referred to palliative care despite both professional recommendations to do so and bereaved parental preference for earlier support from sub-specialty palliative care. OBJECTIVES: To assess the feasibility, acceptability, and impact of an adaptive intervention to address individual and team-level barriers to specialty palliative care referrals. METHODS: A multiple-method approach assessed feasibility and acceptability among clinicians from pediatric oncology teams at a single institution. Quantitative measures of comfort with palliative care consultations, team cohesion, and team collaboration were conducted before and after the intervention. Number of palliative care consults were examined before, during, and after sessions. Intervention satisfaction surveys and qualitative interviews were conducted after the intervention. RESULTS: Twenty-six team members (90% of consented) attended at least one intervention session with 20 (69%) participants completing 75% or more sessions. The intervention was modified in response to participant feedback. After the intervention, participants reported greater team cohesion, comfort discussing palliative care consultation, team collaboration, process satisfaction, and decision satisfaction. Participants agreed that the training was useful, effective, helpful, and worthwhile, that they would use the skills, and that they would recommend the training to other providers. The numbers of palliative care consults increased before intervention sessions were conducted, but did not significantly change during or after the sessions. In the interviews, participants reported overall favorably regarding the intervention with some participants reporting changes in practice. CONCLUSION: An adaptive intervention to reduce barriers to initiating palliative care for pediatric oncology teams is feasible and acceptable.


Subject(s)
Hospice and Palliative Care Nursing , Neoplasms , Child , Feasibility Studies , Humans , Medical Oncology , Neoplasms/therapy , Palliative Care/methods
7.
J Pain Symptom Manage ; 58(1): 11-18, 2019 07.
Article in English | MEDLINE | ID: mdl-31004773

ABSTRACT

CONTEXT: Interprofessional teams often develop a care plan before engaging in a family meeting in the pediatric cardiac intensive care unit (CICU)-a process that can affect the course of the family meeting and alter team dynamics but that has not been studied. OBJECTIVES: To characterize the types of interactions that interprofessional team members have in pre-family meeting huddles in the pediatric CICU by 1) evaluating the amount of time each team member speaks; 2) assessing team communication and teamwork using standardized instruments; and 3) measuring team members' perceptions of collaboration and satisfaction with decision making. METHODS: We conducted a prospective observational study in a pediatric CICU. Subjects were members of the interprofessional team attending preparation meetings before care meetings with families of patients admitted to the CICU for longer than two weeks. We quantitatively coded the amount each team member spoke. We assessed team performance of communication and teamwork using the PACT-Novice tool, and we measured perception of collaboration and satisfaction with decision making using the Collaboration and Satisfaction About Care Decisions questionnaire. RESULTS: Physicians spoke for an average of 83.9% of each meeting's duration (SD 7.5%); nonphysicians averaged 9.9% (SD 5.2%). Teamwork behaviors were present and adequately performed as judged by trained observers. Significant differences in physician and nonphysician perceptions of collaboration were found in three of 10 observed meetings. CONCLUSION: Interprofessional team members' interactions in team meetings provide important information about team dynamics, revealing potential opportunities for improved collaboration and communication in team meetings and subsequent family meetings.


Subject(s)
Attitude of Health Personnel , Communication , Heart Diseases/therapy , Intensive Care Units, Pediatric , Patient Care Team , Female , Humans , Male , Prospective Studies , Qualitative Research
8.
J Pain Symptom Manage ; 57(6): 1089-1098, 2019 06.
Article in English | MEDLINE | ID: mdl-30876957

ABSTRACT

CONTEXT: Parents of children in the pediatric cardiac intensive care unit (CICU) report inadequate communication and a lack of empathy during conversations with their clinicians. OBJECTIVE: To assess quantitatively and qualitatively the contributions made by team members of different professions in communicating with parents during family meetings. METHODS: Prospective observational study. The study was conducted in the pediatric CICU at the Children's Hospital of Philadelphia. Subjects were members of the interprofessional team attending family meetings for patients admitted to the CICU longer than two weeks. We used quantitative conversation attribution and coding to compare durations of attendee contributions and contribution type by professional role. The SCOPE codebook and other quantitative codes drawn from best practices in family meetings were used to measure communication behaviors. A qualitative analysis of nurses' and social workers' contributions was used to identify themes not otherwise captured. RESULTS: Across 10 meetings, physicians spoke for an average of 78.1% (SD 10.7%) of each meeting, nonphysicians 9.6% (SD 7.8%), and parents 17.4% (SD 12.2%). Parental understanding was assessed an average of 0.2 (SD 0.4) times per meeting. Parents expressed emotion an average of 4.2 times per meeting (SD 7.1), and the clinical team responded empathetically 2.2 times per meeting (SD 4.3). All clinician empathic responses were a minority of their overall contributions. Conversation was almost exclusively between physicians and families until physicians indicated other team members could contribute. CONCLUSIONS: Coordination of team members' roles in the meetings may improve parental engagement necessary for decision-making and empathic responses that are often missed.


Subject(s)
Intensive Care Units, Pediatric/organization & administration , Patient Care Team/organization & administration , Professional-Family Relations , Adult , Cardiac Care Facilities , Child , Communication , Decision Making , Empathy , Female , Humans , Male , Nurses , Parents , Physicians , Prospective Studies , Social Workers
9.
Pediatrics ; 141(4)2018 04.
Article in English | MEDLINE | ID: mdl-29567813

ABSTRACT

BACKGROUND: Hopes of parents of children with serious illness play an important role in decision-making and coping. Little is known about how parent hopes change over time. We describe the changes in parent hopes across multiple domains and time intervals, examine hopes in a subgroup of parents whose child died, and explore the maintenance of domains over time. METHODS: In a mixed-methods prospective cohort study on decision-making, parents of seriously ill children reported demographic characteristics and hopes at baseline and reported any changes in hopes at 4-, 8-, 12-, 16-, and 20-month follow-up visits. Hopes were coded into 9 domains. Hope changes and domain changes were identified for each parent at each visit. RESULTS: One hundred and ninety-nine parents of 158 patients most often reported hopes in the domains of quality of life (75%), physical body (69%), future well-being (47%), and medical care (34%). Hope percentages increased over time for quality of life (84%), future well-being (64%), and broader meaning (21%). The hope domains reported by parents of children who died were similar to the rest of the sample. The majority of parents who completed 5 to 6 follow-up visits changed at least 1 domain. At the individual parent level, some domains revealed considerable change over time, whereas other domains were stable among a subset of parents. CONCLUSIONS: The specific hopes and overall areas of hope of parents of seriously ill children vary over time, although most hopes fall within 4 major areas. Accordingly, clinicians should regularly check with parents about their current hopes.


Subject(s)
Critical Illness/psychology , Decision Making , Hope , Parents/psychology , Severity of Illness Index , Adaptation, Psychological/physiology , Adult , Critical Illness/therapy , Decision Making/physiology , Female , Hope/physiology , Humans , Male , Middle Aged , Quality of Life/psychology , Young Adult
10.
J Pain Symptom Manage ; 54(6): 909-915, 2017 12.
Article in English | MEDLINE | ID: mdl-28807699

ABSTRACT

CONTEXT: The families of oncology patients requiring intensive care often face increasing complexity in communication with their providers, particularly when patients are cared for by providers from different disciplines. OBJECTIVE: The objective of this study was to describe experiences and challenges faced by pediatric oncologists and intensivists and how the oncologist-intensivist relationship impacts communication and initiation of goals of care discussions (GCDs). METHODS: We conducted semi-structured interviews with a convenience sample of 10 physicians, including pediatric oncology and intensive care attendings and fellows. RESULTS: We identified key themes (three barriers and four facilitators) to having GCDs with families of oncology patients who have received intensive care. Barriers included challenges to communication within teams because of hierarchy and between teams due to incomplete sharing of information and confusion about who should initiate GCDs; provider experiences of internal conflict about how to engage parents in decision-making and about the "right thing to do" for patients; and lack of education and training in communication. Facilitators included team preparation for family meetings; skills for partnering with families; the presence of palliative care specialists; and informal education in communication and willingness for further training in communication. Notably, the education theme was identified as both a barrier and resource. CONCLUSION: We identified barriers to communication with families both within and between teams and for individual physicians. Formal communication training and processes that standardize communication to ensure completeness and role delineation between clinical teams may improve oncologists' and intensivists' ability to initiate GCDs, thereby fulfilling their ethical obligations of decision support.


Subject(s)
Communication , Family , Oncologists , Child , Comprehension , Critical Care , Education, Medical, Continuing , Humans , Interviews as Topic , Neoplasms/therapy , Palliative Care , Patient Care Team , Pediatrics , Professional-Family Relations , Qualitative Research
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