Parent experience with volunteers and support groups in a multidisciplinary DSD clinic

Abstract

Objective:

Despite recommendations that clinics for children with a difference of sex development (DSD) should include peer support, information on how to provide this support is lacking. We utilized a mixed-methods program evaluation to evaluate family satisfaction with our clinic-based volunteers (who either have DSD themselves or are a parent of a child with DSD) and to understand the experience of these volunteers.

Methods:

Parents (n=29) of a child with DSD completed an electronic survey. Interviews were conducted with three clinic volunteers.

Results:

Most participants (72%) met with a clinic volunteer and majority (81%) rated their interaction as helpful. Most common topics discussed between parents and volunteers included: connecting to support groups (81%), their child’s future (62%), and learning about their child’s diagnosis (48%). Half of parents (48%) attended an after-clinic support group lunch, and 43% of these attendees rated the lunch session as helpful. Parents who attended a lunch liked the experience because they met other families with a child with a similar medical condition (100%), met volunteers with a similar medical condition (64%), and it helped them think more positively about their child’s future (64%). Those who did not attend a lunch cited logistical reasons for not attending.

Conclusions:

Incorporating clinic volunteers into a multidisciplinary DSD clinic is associated with high reported rates of satisfaction by families and volunteers.

Multidisciplinary, patient-centered care is recommended for individuals with a disorder or difference of sex development (DSD) (Development, Consortium on the Management of Disorders of Sex, 2006; Lee, Houk, Ahmed, & Hughes, 2006). It is also recommended that DSD clinics include a “behavioral health component and peer support” (Asciutto, Haddad, Green, & Sandberg, 2011) and that children with a DSD and their families participate in support groups (Lee et al., 2006). While pediatric psychologists are well integrated within large multidisciplinary DSD clinics nationwide, there are very few clinic-based support groups or clinic-based volunteers with a DSD serving in a peer support role.

In a study of parents of a child diagnosed with a DSD under age two with moderate-to-severe genital ambiguity, a quarter of parents surveyed reported low quality of life and 15-18% experienced clinically significant anxious, depressive or posttraumatic stress symptoms (Suorsa et al., 2015). Although many parents or caregivers function quite well, 40% indicated the need for psychological support (Bennecke et al., 2015). Despite recommendations for psychosocial support and literature on parent functioning, there are limited data on how best to provide this support. Our multidisciplinary team surmised that clinic-based peer support overseen by a pediatric psychologist could be a convenient option for families, facilitate connection with other individuals or families with a DSD, and encourage patients and families to become involved in outside support groups sooner.

To fill this gap in service, we integrated adults with a DSD or parents of a child with a DSD as volunteers in our multidisciplinary clinic to provide non-medical support to families. The volunteers meet with families during clinic and/or at an after-clinic support-group lunch. Subsequently, we conducted a formal program evaluation using mixed methods to understand the experiences of the families and volunteers to determine the effectiveness of this model. We surveyed families attending our clinic to determine their frequency of interaction with a clinic volunteer and attendance at support group lunches, as well as satisfaction with the experience. We further explored the impact of this model by conducting qualitative interviews with our clinic volunteers to understand such experiences from their perspectives. The goals of this project were to evaluate our own program as well as share this knowledge so that other programs could develop a similar model, if desired.

Methods

Study Design

This program evaluation utilized mixed methods including quantitative data from an online survey given to adolescent patients and parents whose children were diagnosed with a DSD, in addition to qualitative data from interview transcripts from clinic volunteers. The protocol was reviewed by the local institutional review board and determined to be a program evaluation rather than human subjects research. The program evaluation protocol was approved by the Organizational Research Risk and Quality Improvement Review Panel at our institution. The authors wish to describe the results of this program evaluation specifically based on our multidisciplinary clinic and results may not be generalizable to other settings.

Study Population

English- and Spanish-speaking parents or guardians of a child with a DSD of any age and English- or Spanish-speaking adolescents with a DSD ages 13 years and above who had at least one appointment in our multidisciplinary DSD clinic were eligible to participate. Participants were eligible whether or not they had ever met with a volunteer or attended an after-clinic lunch. The study excluded parents who were not legal guardians of the patient, those without an email address (this was an email-based survey), and those who sought consultation in our clinic but were not diagnosed with a DSD. All survey participants were either recruited during a scheduled appointment in clinic or by telephone if they had already established care with our clinical program. Three clinic volunteers were interviewed by phone.

Setting

Team members in the Children’s Hospital Colorado SOAR clinic include pediatric endocrinologists, pediatric urologists, pediatric psychologists, adolescent gynecologists, a geneticist, a genetic counselor, a nurse, and three volunteers. The three volunteers are either an adult with a DSD or a parent of a child with a DSD. Volunteers were either a prior patient, a parent of a current patient or had connected with our team through a large national support group because of a desire to get more involved in a DSD program. Prospective candidates for the volunteer role were screened or contacted by the pediatric psychology team. Prior to being appointed as a clinic volunteer, prospective candidates interested in the position were interviewed by team members, underwent a background check and a review of references, as well as a formal hospital volunteer training (e.g., HIPAA, boundaries, confidentiality). The volunteers also completed training with the pediatric psychologists on the team to develop rapport building skills, practice sharing their story, and outline the communication process with the multidisciplinary team. At least one volunteer is present at every multidisciplinary clinic day and one volunteer is designated as the lead. All the original volunteers continue to be involved with the program. Ongoing oversight for the volunteer role is provided by the pediatric psychologists on the team.

The process for onboarding and recruiting volunteers was developed by the pediatric psychologists on the team prior to the initiation of the volunteer program. Both pediatric psychologists had experience interfacing with volunteers in other settings where the process was less structured. Additionally, due to the current sociopolitical climate related to DSD, the pediatric psychologists felt that a role for volunteers should be overseen by the psychologists.

The clinic day starts with a pre-clinic meeting, which the lead volunteer attends, where we determine which team members will meet with each family that day. Families then meet with each team member individually. Families typically meet with a volunteer after at least one medical provider has met with the family. One of the physicians or psychologists introduces the role of the volunteers. Parents and/or patients have the option of meeting with a volunteer at each visit to the multidisciplinary clinic. Families can meet with volunteers during clinic, in the clinic room, and/or at a support group lunch after clinic. The latter session is facilitated by team psychologists and volunteers and has an unstructured format. Volunteers provide the contact information (e.g., personal email address, personal cell phone number) for all of the volunteers to families so they can be available as a support between clinic visits. Finally, if a baby is diagnosed in the hospital with a DSD, we share the contact information for the volunteers if the family would like to reach out for support prior to their first multidisciplinary clinic visit; the contact information is also included in our educational binder that is provided to families.

Procedures

Eligible participants completed the survey between April 2015 and October 2016. The online survey comprised of 25 items that were divided into four categories: demographic information (8 items), attendees’ experience of interaction with clinic volunteers (7 items), attendees’ perception of support group lunch session (7 items), and connection to support groups or other affected individuals (3 items). In that date range, most families were asked in clinic (or some over the phone, for those who did not have a clinic visit in the time period of the program evaluation but were established patients) if they would like to participate. The demographic portion of the survey was completed in clinic on an electronic tablet or online after a link was emailed to the family. The remaining survey questions were emailed to eligible participants after the demographic portion was completed. This sequence allowed families in clinic to have the opportunity to meet with a volunteer and/or attend the after-clinic support group at lunch prior to responding to the survey. Parents received a separate survey link from the adolescents. If there were two parents or caregivers present at the clinic visit, each one was given the opportunity to take the survey separately. Eligible participants were asked to complete the survey once. The lead author kept an enrollment log, attended clinic, and ensured that the survey was only completed once. Participants were offered a small gift card for completion of the survey.

The authors (NN, CB) jointly interviewed the three clinic volunteers by phone. These volunteers were interviewed individually in a semi-structured interview guide. Interview questions were formulated based on outcomes of discussion among the pediatric clinical team members. Interview questions were open-ended to allow participants to describe experiences from their own perspectives. Questions included: i) What made you want to get involved; ii) How do you introduce yourself to families?; iii) What are the most common things you talk about with families?; iv) What are some of the most surprising or difficult things families or teenagers have asked you?; and v) What resources do you share with families? Additional questions were also asked for clarification to these main points. All interviews were audio-recorded and later transcribed; field notes were taken.

Analyses

Survey data were stored and managed using Research Electronic Data Capture (REDCap) tool (Harris et al., 2009). Descriptive analyses of survey data were performed using SPSS version 25 (Armonk, NY, IBM Corp.). Categorical variables were compared using chi-squared tests. Analysis of qualitative data was completed using the consensual qualitative research approach (Hill et al., 2005; Hill, Thompson, & Williams, 1997). A thematic analysis framework was used to organize, code, and identify themes within the interview transcripts (Braun & Clarke, 2006) using Atlas.ti software (Version 8; Scientific Software Development, Berlin). In order to minimize subjectivity, the authors (MA, CB) systematically reviewed the transcripts and independently coded the interviewees’ responses. Once a list of initial codes was generated, they independently clustered the codes into emerging themes and sub-themes pertaining to the volunteers’ experience. As a group, these preliminary findings were discussed to align code definitions and to refine themes and sub-themes, which were subsequently finalized through a process of inductive reasoning.

Results

Survey Results

Fifty-four participants from 41 families consented to the study and completed the demographic form. Ultimately, 29 parents and 5 adolescents completed the rest of the survey (63% response rate). Demographics are in Table 1. There were differences in ethnicity (p=0.001) but not race or gender among those who did versus did not complete the survey. Among parents who completed the survey, 83% of their children were born in the United States and 69% were born in the state of the clinic. For parents who completed the survey, 86% reported that English was the primary language spoken in the home, 7% primarily spoke Spanish and 7% another language. The age of the child seen ranged from 1 month to 17 years.

Table 1. Demographics.

	Parents who completed the survey	Parents who did not complete the survey	Teens who completed the survey
	n=29 (%)	n=20 (%)	n=5 (%)
Gender identity
Female	23 (79)	11 (55)	5 (100)
Male	6 (21)	5 (25)	0 (0)
Something else or not specified	0 (0)	4 (20)	0 (0)
Race
White/Caucasian	23 (79)	9 (45)	3 (60)
Non-White or multiracial	4 (14)	6 (30)	1 (20)
Not specified	2 (7)	5 (25)	0 (0)
Ethnicity
Hispanic/Latino	6 (21)	12 (60)	2 (40)
Not specified	0 (0)	4 (20)	1 (20)

Most participants had met with a clinic volunteer (72% of parent participants and 100% of adolescent participants). About half of respondents had attended an after-clinic support group lunch (48% of parent participants and 20% of adolescent participants). Only parents’ responses are included given the low number of adolescent participants.

Attendees’ experience of their interaction with clinic volunteers.

The results of the survey based on the parents’ experience with the clinic volunteers are in Table 2 and Figure 1. Respondents reported that when they met with a clinic volunteer, they most often discussed the following topics: connecting to support groups, their child’s future, and learning about their child’s diagnosis (Figure 1a). They reported that meeting with a volunteer most commonly changed their mind about their child’s future, how they view their child’s genital development, and how to discuss the diagnosis with friends and family (Figure 1b).

Table 2: Attendees’ experience of their interaction with clinic volunteers and after-clinic lunch.

Number of visits to the clinic	n=29 (%)
1	13 (45)
2	6 (21)
3	5 (17)
≥4	4 (14)
Missing	1 (3)
Met with a clinic volunteer(s)
Yes	21 (72)
No	8 (28)
* How helpful was meeting with the clinic volunteers	n=21 (%)
1-2	0 (0)
3	4 (19)
4	5 (24)
5	12 (57)
Did meeting with a clinic volunteer change your mind about any medical decisions you made?
Yes	0 (0)
No	18 (86)
I don’t know	3 (14)
How likely are you to disclose something to one of the clinic volunteers that you wouldn’t with your medical provider?
Very unlikely	10 (48)
Somewhat unlikely	6 (29)
Likely	0 (0)
Somewhat likely	4 (19)
Very likely	1 (5)
Missing	8 (38)
Attended a support group lunch after a clinic appointment	n=29 (%)
Yes	14 (48)
No	15 (52)
Number of support group lunches attended	n=14 (%)
1	6 (43)
2	3 (21)
≥3	3 (21)
* How helpful do you find support group lunches
1-2	0 (0)
3	7 (50)
4	1 (7)
5	5 (36)
Not answered/missing	1 (7)

^*Evaluated based on Likert scale where 1 = not helpful to 5 = extremely helpful

Figure 1.

Parent experiences with clinic volunteers.

a) Percent of respondents (n=21) who discussed the topics listed with a clinic volunteer; b) Percent of respondents (n=21) who stated that meeting with a volunteer changed their mind about these specific items.

Attendees’ perception of support group lunch session.

Survey results of the participants’ experience with the clinic support group lunches are summarized in Table 2 and Figure 2. Respondents reported that they liked going to support group lunches because they get to meet other families whose children have a similar medical condition, they get to meet volunteers who have a similar medical condition, and they help them to think more positively about their child’s/their future (Figure 2a). Families who had not gone to a support group lunch most frequently stated that they didn’t have time to stay after the appointment, had a long drive home, or another reason not listed (Figure 2b). Of the people who chose another reason for not going to the lunch, two people stated that either their child was not comfortable going or that they were nervous about meeting new people. Two people had other medical conditions (one acute and one chronic) and neither felt that it was the right time to discuss the DSD with others. One person wanted to go but their clinic appointment ended later than expected and thus missed the session.

Figure 2.

Parent experiences with after-clinic lunches.

a) Reasons why respondents who had attended an after-clinic support group lunch (n=14) reported they liked going. b) Reasons why respondents who had not attended an after-clinic support group lunch (n=15) reported they had not attended.

Observations from Interview Transcripts with Volunteers

Interview transcripts provided another perspective (i.e., from the lens of the clinic volunteers) to complement the quantitative data derived from the survey (i.e., from the lens of clinic attendees).

Key themes.

Four major themes emerged at the final point of code analysis reflecting the experiences of volunteers: i) their perceived role within the clinic, ii) the impact of their volunteer role for the clinic attendees, iii) the benefits that they obtain from being a clinic volunteer, and iv) challenges they encountered within this position. All volunteers had similar perspectives related to their involvement in the clinic; there was no voice of dissent identified via the interviews. Table 3 illustrates the connectedness between sub-themes and respective major themes.

Table 3. Themes, sub-themes, and representative quotes from interviews with 3 clinic volunteers.

Main Theme	Sub-theme	Representative quotes
Perceived role	A resource for parents	“…I speak from personal experience, I speak from the experiences, you know, what I’ve heard from dozens of my friends and peers who I know in the community of DSD and intersex… I always emphasize this isn’t medical advice because I’m not a doctor.” “…I introduce myself as a volunteer, I was a patient. I am here because I had a condition like your child or you have […]. You are here to talk with your doctors about medical stuff. I am here to tell you what it was like to be you 15 years ago.”
	As an advocate by normalizing the condition	“…This is what I did and this is my experience. So I hope that that helps you…I just want to share my experiences and hope that that helps them.” “…I am there as a volunteer, in particular because I have a condition….may be similar to your child’s, or depending on the diagnosis of the patient I may say it is a little bit different from your child’s but I try to draw a commonality….” “….this is what happened with me and don’t worry. I think that felt really good, it felt like a girlfriend talking to another girlfriend.”
	As a bridge that connects people and provides resources	“Everybody is wonderful, everybody is open and we give out phone numbers, you can call us any time.” “I’ll provide…my personal contact information should they want to contact me…I might offer to put them in touch with someone…I never give out that person’s contact information. I always just offer mine and say, ‘hey, I have a friend who has gone through this. If you are interested in talking with them at some point or emailing with him or calling him, just send me an email or give me a call and I can put you in touch.’…I offer myself as a resource to talk to or offer information and support if they need that.” “We are just going to sit and casually have some time to talk. And then I want to introduce them to other families.”
Perceived impact	Fostering connectedness	“…you have seven families sitting in there and [we] tell [our stories], and I think that with us three opening up, I think it makes it easier for them [parents or adolescents] to open up and share their experiences.” “…me as being a conduit.” “I am happy to share my story with you so that you can feel like this is an open area for us to talk.” “I feel like families are a lot better connected after clinic experiences versus before. And I think that many of them explicitly address that when I meet with them. You always get a positive feedback about how great it is that, they…have the opportunity to meet with other families…they express as being really beneficial to them because it helps them to feel like not alone…less scary.”
	Providing relief through being a “hopeful example”	“I just wanted to try to…be able to help somebody else…get through that first year or two.” “I also just try to present the experience of those of us who have, you know, lived through childhood, teen years and adulthood having some of these experiences and just make sure that they [parents of patients] have that sort of future, the future adult version of their child in mind.”
Perceived self-benefits	Keep up with information in the field	“…just … little experiences like that, we try to share, to give each other a little more information…”
		“…I know that there’s other things out there too because I wasn’t aware. Which…was very helpful to me, clinic was very helpful to me as a parent, to talk to other parents…”
	Anxiety Reduction	“You know personally, I would talk about my fears with my daughter and her going to school and how fearful I am that she won’t get the care that she needs while she’s there…and then all that stuff is in place, which helps a little.”
	A way to contribute to society	“I just want people to know that there’s resources out there and parents who do want to support and help others that are going through the same thing.”
		“…I knew that I wanted to be involved with …physicians and then also…patients and their families in some capacity relating to support and advocacy around DSD or intersex conditions.”
Challenges encountered	Lack of utilization of services	“I was excited to do it [being a volunteer at the clinic], but then I haven’t had anybody [patients/parents] call me, which has been…kind of disappointing for me…”
		“…I just haven’t had that many people contact me through the hospital…But I also understand what they’re going through. I went through it too. And I hope, someday, if they need the support then they’ll call.”
	Extending reach	“I don’t know how to get the word out to people who don’t go to Children’s Hospital either, but there’s these conditions all over the place.”
	Logistics	“…if you go…Friday morning and see all the doctors, and then you have to wait a couple hours to go to the lunch…because you don’t really want to wait around.” “…I don’t want like the 7- and 8-year-old kids to feel like they are being talked about, for example, and make them feel uncomfortable…”

Theme 1: Volunteers’ perception of their role at the clinic.

All the volunteers perceive themselves to be a resource for clinic attendees. They emphasize that they are not medical providers and are not providing medical advice, but instead, sharing their own experiences. They see themselves as bridges that connect people (connecting families with the clinical team, families to each other, and families to the volunteers), as well as a unique source for providing support and resources beyond what medical providers typically give.

Theme 2: Impact on clinic attendees.

The volunteers see part of their role as bringing clinic attendees together. The volunteers create a safe environment to facilitate discussion of sensitive topics surrounding DSD by fostering a sense of connectedness among clinic attendees. Further, volunteers provide hopeful examples to parents and adolescents that they interact with by drawing commonality, sharing their stories and coping strategies. Collectively, they feel that these approaches reduce DSD-related stigma and help clinic attendees to feel more positive about their future and general well-being.

Theme 3: Perceived benefits derived through volunteering role.

The volunteers benefit by keeping up with the information in the field. Being in clinic helps to alleviate some of their own worries. Lastly, their role gives them an opportunity to give back to society.

Theme 4: Challenges encountered.

The volunteers shared some frustrations and logistical challenges. Clinic attendees may be at different places in the acceptance of their child’s condition and may not be interested in talking with a volunteer. Sometimes, they perceived their eagerness to share resources as unreciprocated (e.g. families wouldn’t call them after they provided their phone number). Volunteers want people outside of our hospital to know about the clinic, volunteers and lunches. Finally, they provided suggestions and feedback to foster a friendlier and more interactive atmosphere.

Discussion

In this mixed-methods program evaluation, we found that families who met with clinic volunteers had found the interactions to be helpful. The volunteers identified their role as being resources, advocates and bridges that connect people. Additionally, they felt that they were having a positive impact on the lives of the families that they interacted with in the clinic, and this role also had self-benefits. This effort may present a valuable opportunity to reduce stigma and provide greater emotional support to affected individuals and their families; an important turn away from a history characterized by lack of disclosure (Wiesemann, Ude-Koeller, Sinnecker, & Thyen, 2010).

To our knowledge, this evaluation is the first to assess the impact of integrating volunteers overseen by pediatric psychologists to provide support to patients with DSD, and their families. There are other studies that have indicated the ways in which clinic volunteers/advocates may be helpful in providing additional support for families beyond that already given by medical providers. In a multicenter, qualitative study of the experience of parents raising a child with a DSD, parents reported four major areas of stress, concern, and uncertainty: (1) sex announcement and gender assignment, (2) surgical decision-making, (3) sharing information with others, (4) interactions with healthcare providers (Crissman et al., 2011). Other studies have also shown that families of an infant with DSD report feelings of being overwhelmed by the diagnosis and medical jargon. They conveyed a need for social support from families whose children have a similar medical condition (Boyse, Gardner, Marvicsin, & Sandberg, 2014). Parents of children with complex or rare conditions seek out other families who have had similar experiences, and many parents find this kind of support helpful (Davies & Hall, 2005). These are all topics that our clinic psychologists provide support around and discuss with families; however, the shared experience with our clinic volunteers adds an additional option for obtaining support, resources, and lived experience. As such, the families surveyed reported that these were also topics they discussed with the clinic volunteers. For us, having the psychologists and clinic volunteers work closely together to provide individual and family support has been a helpful model. Since many families desire additional guidance on how to share information about their child’s diagnosis with others (Crissman et al., 2011), clinic volunteers can model how they share information about themselves (both currently and in the past). In conjunction, pediatric psychologists use a biopsychosocial framework to conceptualize the needs of the family and implement targeted interventions to support and coach families through these discussions. One understudied area is how to utilize individuals who are quite adept at discussing their own or their child’s diagnosis to help others with this process. Another area is how families seek information about sharing their child’s diagnosis and who they prefer getting advice from.

Although most of the families surveyed had met with a clinic volunteer (72%), only half (48%) attended an after-clinic support group lunch. During this unstructured session, families have the opportunity to interact with psychologists, clinic volunteers, and other families. Those who had not attended the lunch sessions primarily cited logistical reasons as barrier. Due to the participation rate and this feedback, we are working on how best to structure clinic-based support groups to meet the needs of families. Several strategies that we have trialed since the completion of the program evaluation include: offering the group on a weekend, offering the group on a non-clinic day, and offering the group in a different location at the hospital separate from the clinic. These changes have not increased attendance. Thus, our program plans to trial offering the support group via telemedicine so families can participate from home, hosting the support group at a location separate from the hospital, and providing a structured psychoeducational topic for each support group session.

There are several limitations. First, results are not intended to be generalizable to other settings as it was based on our program and institutional setting. Themes obtained from the interviews with volunteers at the SOAR clinic and survey results from our patient population may not be the same had this been replicated in other settings or with a different population. If more volunteers were interviewed, the themes may be different, and it is likely that the themes would differ based on background, cultural factors and location. Second, we had a small sample size and a lack of ethnic diversity among those who completed the surveys (that differed from those who did not complete the survey). We were also not able to obtain information from families fluent in a language other than English or Spanish. Patients in our program (and their families) who do not speak English and/or Spanish may be at higher risk of social isolation.

Further areas of inquiry may also include determining whether this model is effective in reducing isolation or feelings of stigma among individuals with DSD and their families, changing parents’ perceptions of their child’s future, and its overall impact in elevating quality medical care. Specific to our program, we are also interested in why some families chose not to meet with a volunteer, and among those who did, determining if this impacted the medical decisions they were making for their child. We had a relatively high percentage of Hispanic/Latino families, although many of them did not complete the survey, so better understanding the needs of this population is important. Finally, this initial evaluation of the program helped to identify additional opportunities to expand the role of volunteers within the multidisciplinary team, including: involvement in a team-approach to develop surgical decision-making tools and care guidelines, providing grand rounds to our allied health trainees, and creating educational materials for patients about commonly cited challenges in adjusting to a new diagnosis.

Through this evaluation and seven years of experience with clinic-based volunteers, we have learned several lessons that may be helpful for other programs considering this model. Our psychologists oversee and guide the volunteers, as well as coordinate the screening and onboarding process. This allows for additional structure and support around patient interactions and guidance on role definition. As some of our volunteers were disappointed with the lack of ongoing communication with families, we recommend that during the vetting process with potential volunteers that an explanation of the role includes a conversation about the unpredictability of the frequency of patient interactions and a focus on the expanded opportunities as detailed above. While these volunteers have been instrumental in making our after-clinic support group lunches and community-building events a reality, the ongoing oversight by the psychologists on a team can serves to mitigate potential issues related to a breach of personal boundaries, to evaluate the adjustment and coping of volunteers, and to support the structure of the role. Secondly, it is of the utmost importance that volunteers have excellent listening and communication skills as they closely interact with both the medical team and families. They should be open to hearing a variety of viewpoints. Volunteers that have a set agenda related to surgical or medical procedures or that have a limited capacity to respect various worldviews or beliefs of families would not be a good fit for this important role. Third, the medical team must also be open to hearing the viewpoint of the volunteers or insights they have for specific patients and/or families. Trust is built with time spent closely working together. Finally, we have not yet had any volunteers leave our clinical program, but if they do and maintain contact with families, this would be in the role of another affected individual or through established support groups, not representing our clinical program and we would notify our families in writing about the departure.

In conclusion, both families and volunteers with a DSD derive positive benefits from their interaction within the setting of a multidisciplinary clinic in a large tertiary care hospital. Further studies are needed to determine how best to optimize this model, as well as to evaluate its impact in providing patient care and support for families.

Implications for Impact Statement:

Adult volunteers with DSD are rarely incorporated into multidisciplinary pediatric programs. This single-site study showed that most parents that met with a volunteer in clinic found their interaction to be helpful in coping with their child’s condition.