Article Figures & Data
Tables
Participant State Specialty Setting Years practicing medicine Personal connection to: Adoption Limited family medical history 1 RI Internal medicine-pediatrics Academic nonprofit 24 No Yes, friend 2 RI Family medicine Academic nonprofit 27 Yes, immediate family (child) Yes, immediate family (child) 3 RI Internal medicine (PCP) Academic nonprofit 7 No Yes 4 RI Family medicine Academic nonprofit 3 No No 5 RI Family medicine Academic nonprofit 25 No No 6 RI Internal medicine (PCP) Community nonprofit 42 Yes, immediate family (child) Yes, immediate family (child) 7 RI Family medicine Community nonprofit 28 Yes, immediate family (child) Yes, immediate family (child) 8 RI Internal medicine (PCP) Community for profit 23 Yes Yes 9 RI Internal medicine (PCP) Community nonprofit 31 Yes, immediate family (child) Yes, immediate family (child) 10 RI Family medicine Community nonprofit 38 Yes, friend Yes, friend 11 RI Internal medicine (PCP) Community for profit 35 Yes Yes 12 MN Family medicine Community for profit 39 Yes Yes 13 MN Family medicine Community for profit 44 Yes, friend Yes, friend 14 MN Family medicine Community for profit 20 Yes, friend Yes 15 MN Family medicine Community nonprofit 39 Yes, immediate family (child) Yes, immediate family (child) 16 MN Family medicine Community nonprofit 32 Yes, immediate family (child) Yes, immediate family (child) 17 MN Family medicine Academic nonprofit 40 Yes, immediate family Yes, immediate family 18 MN Family medicine Academic nonprofit 37 Yes, immediate family Yes, immediate family (child) 19 MN Family medicine Academic nonprofit 4 No No 20 MN Family medicine Community for profit 14 No Yes 21 MN Family medicine Academic nonprofit 34 Yes Yes 22 MN Family medicine Academic nonprofit 17 Yes, immediate family Yes, immediate family 23 MN Family medicine Community nonprofit 27 Yes, immediate family (child) Yes, immediate family (child) MN = Minnesota; PCP = primary care physician; RI = Rhode Island.
Participants, No. 23 Years practicing medicine Mean 27.4 Minimum 3 Maximum 44 State distribution, No. (%) Minnesota 12 (52) Rhode Island 11 (48) Specialty, No. (%) Family medicine 17 (74) Internal medicine (PCP) 5 (22) Internal medicine-pediatrics 1 (4) Practice setting, No. (%) Academic 10 (44) For profit 6 (26) Nonprofit 7 (30) Personal connection to adoption, No. (%) Yes 17 (74)a No 6 (26) Personal connection to LFMH, No. (%) Yes 20 (87) No 3 (13) LFMH = limited family medical history; PCP = primary care physician.
↵a A total of 8 (35%) were parents who adopted (4 from Rhode Island, 4 from Minnesota), and 3 (13%) were siblings or aunt/uncle of adoptee.
Themes Quotes Theme 1: PCPs report significant knowledge gaps regarding adult adoptees with LFMH and want guidance regarding appropriate preventive screening and genetic testing. “In terms of formal resources we’ve had, I don’t think there’s ever really been any training, any continuing medical education or anything about how to approach [LFMH] with patients.” (Participant 9)
“I can’t think of any training that I’ve had on this topic…I cannot think of a time when we have addressed adoption at all other than as an option for patients who are facing an unplanned pregnancy, and that’s a different angle altogether.” (Participant 21)
“I don’t think I’ve had any formal training or lectures or specific things on how to care for people who are adopted. I’ve learned about people who are adopted both from friends and from my clinical work over time, but not formal training.” (Participant 5)
“Most of [my training] comes from personal experience of raising an adopted child. So every bit was focused on care of the adopted child, not care of the adult who happens to be adopted as a kid. It’s nonexistent, particularly for the adults.” (Participant 7)
“What do adult adoptees want from their primary care doctor? How much do I ask, what do I ask?” (Participant 14)
“The differential is a little broader if you don’t have the family medical history. But you don’t want to pin everything on it because I’ve also taken care of patients who were raised by their biological family, and think that they know their family medical history, and there are surprises.” (Participant 2)
“I think it is a little more uncomfortable because you’re guessing. Based on the US Preventive Services Task Force guidelines, in some ways it’s easier because you don’t need to personalize the risk factors. It’s a little more difficult sometimes when you don’t have the parents to check or ask.” (Participant 10)
“The idea of knowing everything about ourselves is a theoretical flaw…the idea of ‘I want all the labs. Test me for everything.’ People want more information, and so that extends to genetic testing, whatever 23andMe has done is activating the patient mindset that really pushes for ‘Can you do a whole body scan?’ Our responsibility as a PCP and one of the hardest parts of our job is figuring out when to stop doing things and trying to say no to people.” (Participant 3)
“Offering genetic testing, how reasonable is that? What is the standard of care? Does that really make a difference?” (Participant 22)Theme 2: Mental illness and trauma are underrecognized and underaddressed. “I think it makes people a little sad to not know their health history, their heritage. ‘Why did my parents choose an adoption plan?’ I think that’s a difficult challenge in life to have to go through, even if you had wonderful adoptive parents. Even if they have really good reasons, it’s still a challenge both in people I know personally and also in my patients.” (Participant 22)
“When you’re adopted, you at some point are going to most likely be dealing with the question of why and abandonment issues, how those would play into anxiety and depression. It could be felt as a traumatic event [depending on how] the age would affect their understanding of it…a newborn baby it’s gonna be felt differently. Possibly it’s less easily recognized by the adoptee, the patient or the doctor. Let’s say somebody was in an orphanage in another country with the experience there and then getting adopted. Did they meet more than one [set of adoptive parents]? Were they not accepted initially? [Did] they come through the foster care system where the parents could have been much more traumatic, some substance abuse, physical or mental neglect, or whatever leading to DCYF being involved, and then eventually going to different foster parents, and then becoming adopted. So there’s so many different circumstances, but I think there’s a big chance that people will feel at the end, and no matter what the circumstances is, ‘How could my mother let me go?’” (Participant 11)
“There are certain psychological and psychiatric challenges that adoptive adults might be more predisposed to from the experience of having been adopted. For kids, there is concern about attachment and trauma from whatever happened leading to the adoption that could have an impact on a person’s health. Where were they between the time that the biological parents gave them up for adoption and the adoption itself? What kind of care did they get there?” (Participant 21)
“There could have been trauma associated with why the biological parents are not the functional parents. Famine, pestilence, prostitution, all kinds of things that can get in the way. Lots of adoptions from areas that are war torn or famine torn. It would depend on how the adoptive child views their adoption. […If they] remember their first parents, or being in a foster home, and then they’re placed in a new situation at age 10 or 12, that could be highly traumatic to the child.” (Participant 10)
“There’s this grief that can be expressed in a lot of different ways, whether it’s depression or posttraumatic stress disorder, anxiety, or a difficulty forming close bonds with others.” (Participant 22)Subtheme: Adoption can be thought of as trauma, with minor opinions represented. “That’s exceptionally complex. But no matter what or when an individual person has their connection with someone severed, I have come to believe that there is trauma associated with that. There are trauma effects in utero, shortly after birth, regardless of how cognizant the individual is of it. There’s no reason that we have to have a frontal lobe for it to be registered. So I really do believe that on some level, there is some trauma associated with that. How an individual absorbs it and how it manifests itself is different, but there is some.” (Participant 16)
“It’d be presumptuous to say that it is automatically trauma that someone other than your biological parents became the primary caregivers in your life. For a lot of people, that is probably one of the best [people] they would identify; those people are incredibly important.” (Participant 1)
“My instinct is to say no, because again I think it goes back to the circumstances around that adoption. If we really think about it, adoption is a beautiful thing, and it’s a gift that it exists. If the circumstance around it was not trauma, was not abuse, if there were no adverse trauma adverse events that led up to the adoption, then I would say that, in general, adoption itself shouldn’t be considered a trauma.” (Participant 20)Theme 3: PCPs often obtain family medical history imprecisely, risking miscommunication, microaggressions, and the patient-physician relationship. “It’s always anxiety provoking to go to the provider, and then [being] not sure how to answer questions. When they ask about family medical history…it’s a moment of not really [being] sure how to answer a question. The assumption that I’m their mom doesn’t acknowledge this other part of their story and it’s not like saying I’m not their mom. There is a piece of wanting to honor both [moms].” (Participant 23)
“I would hope that the way we’re teaching medical students these days…lots of patients have families of all shapes and sizes and types, and they may not have access to a biological family history, and that’s fine. You don’t want to browbeat this so that you’re making the patient feel bad or like they’re different or weird or something that they don’t have this information.” (Participant 2)
“Those who are adopted, or who don’t have contact with their biological families would be so worried about what information they couldn’t give me, and then I would just say, ‘You’re not alone. There’s a lot of people who don’t know their biological family’s history.’” (Participant 16)DCYF = Department of Children, Youth, and Families; LFMH = limited family medical history; PCP = primary care physician.
Ask open-ended questions.31 Avoid assumptions or judgement. Assess how much information the patient wishes to know. Normalize adoption and LFMH in health care settings including when reviewing patient questionnaires, interviewing.16,28,31 Reflect the terminology used by the adopted patient.28,31 Avoid unnecessary qualifiers (refer to adoptive parents as parents). Avoid using terms like “real” or “natural” parents, instead use “biological” parents. Do not assume reunion with biological family or “going back to [country]” is desired by or feasible for the adoptee. Recognize the diversity in adoption processes (public vs private, open vs closed, domestic vs international).16,28,31 Be transparent about unknowns and offer to discuss what LFMH might mean for care.28,31 Use shared decision making regarding screening.31 Set realistic expectations, particularly regarding genetic testing and limits to interpretation.69 Refer to medical genetics counselor if possible.69 Recognize the relationship between adoption, mental health, and trauma.16,31 Screen for depression and anxiety, and refer to adoption-competent mental health providers.28,31 Listen to patients with LFMH, including adopted people.28,31 LFMH = limited family medical history; PCP = primary care physician.
Note: Some find the term “birth parents” offensive, with the perception that it minimizes preadoption parenting and decreases their role only to labor.
Additional Files
SUPPLEMENTAL MATERIALS IN PDF FILE BELOW
Supplemental Appendix 1. Interview Guide
- Wexler_Supp_App.pdf -
PDF file
- Wexler_Supp_App.pdf -
VISUAL ABSTRACT IN PDF FILE BELOW
- Wexler_visual_abstract.pdf -
PDF file
- Wexler_visual_abstract.pdf -
PLAIN-LANGUAGE SUMMARY
Original Research
Primary Care Physicians Face Gaps in Caring for Adopted Adults With Limited Family Medical History
Background and Goal:Adopted individuals often have limited access to their family medical history, which complicates their health care. This study explored the knowledge, training, and approaches of primary care physicians when caring for adult adopted patients with limited family medical history.
Study Approach:Researchers conducted in-depth interviews with 23 primary care physicians from Rhode Island and Minnesota to understand their experiences and practices when addressing limited family medical history and adoption-related issues. The interviews included hypothetical clinical scenarios to assess physicians' knowledge, practices, and training gaps.
Main Results:
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Primary care physicians report knowledge gaps and receive little training or resources on adult adoptees with limited family medical history and want guidance around appropriate preventative screening and genetic testing.
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Mental illness and trauma are under-recognized and under-addressed.
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Primary care physicians often obtain family medical history imprecisely, risking miscommunication, microaggressions, and damage to the patient-physician relationship.
Why It Matters: The findings of this study highlight the significant gaps in knowledge and training for primary care physicians caring for adult adopted patients with limited family medical history. Addressing these gaps may improve the quality of care and strengthen physician-patient relationships. Additionally, improved training and resources help primary care physicians provide more competent, compassionate, and inclusive care for adopted adults.
A Qualitative Study of Primary Care Physicians' Approaches to Caring for Adult Adopted Patients
Jade H. Wexler, BA, et al
Warren Alpert Medical School of Brown University, Providence, Rhode Island
Podcast:
An accompanying Annals of Family Medicine podcast episode features the study’s lead author, Jade Wexler, a fourth-year medical student at Brown University, and one of her co-authors, Dr. Elizabeth Toll, a professor of pediatrics and medicine and a clinician educator at Brown University. Together, they discuss the study’s findings and implications in detail. The episode will be available starting Jan. 28 at 9 a.m. EST here.
Visual Abstract:
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