The Science of Diabetes Self-Management and Care2023, Vol. 49(1) 35 –45© The Author(s) 2023Article reuse guidelines:sagepub.com/journals-permissionsDOI: 10.1177/26350106221144962journals.sagepub.com/home/tde
Abstract
Purpose: The purpose of this study is to explore the experiences of parents of children with type 1 diabetes mellitus (T1DM) who are living in rural areas. Individuals living in rural areas face barriers to accessing health care that lead to significant health disparities with increased morbidity and mortality. There is a need to understand the unique experiences of those living in rural communities to support their health needs.
Methods: In this qualitative study, a convenience sample of 11 parents of children who were diagnosed with T1DM in the last 10 years living in Vermont were recruited through connections with local health professionals and family support networks and interviewed about their experiences. Interviews were transcribed verbatim and analyzed using Braun and Clarke’s 6-step approach to reflexive thematic analysis.
Results: Five themes were identified to capture the experience of parenting a child with T1DM in a rural community, including enduring emotional traumas, living life on call, adapting to everyday challenges, lacking a safety net for support, and finding a rhythm.
Conclusions: Although findings echo many themes found in previous studies on experiences of parents of children with T1DM, participants also identified unique barriers such as physical distance from formal and informal support systems, unreliable and/or insufficient technological resources, and lack of understanding of T1DM by their communities, including among child care and schools. Diabetes care and education specialists working with families living in rural areas must explore ways to educate key supports to these families to minimize isolation, stigma, and burnout among parents.
Nearly 20% of the population of the United States lives in rural areas,1 yet little is known about the experiences of parents of children with type 1 diabetes mellitus (T1DM) who live in rural communities. Caring for a child with T1DM necessitates many medical decisions and technical procedures that often result in increased parental stress, anxiety, and depressive symptoms.2 Qualitative studies on the experiences of parenting a child with T1DM indicate that parents strive to find a sense of normalcy after a profoundly life-changing diagnosis, often facing an overwhelming sense of responsibility, a need to be hypervigilant, and feeling isolated on their journeys.3-6 Feelings of burnout, including emotional, physical, and cognitive exhaustion, are common.4 Greater parental stress among parents of children with T1DM is associated with poorer parent and child outcomes,7 indicating a need to identify and manage unique challenges that contribute to general life stress for those living in rural communities.
For those living in rural areas, challenges of parenting a child with T1DM are coupled with known challenges and health disparities experienced in rural communities. The US Census Bureau defines “rural” as any area that is “not urban,” which includes those outside of urbanized areas of 50 000 or more people or urban clusters of 2500 to 49 999 people.1 Individuals in rural areas have decreased life expectancy compared to those living in urban areas, and this gap has widened over time.8 Individuals living in rural areas are at increased risk of premature death from all of the 5 leading causes of death, including heart disease, cancer, unintentional injury, chronic lower respiratory disease, and stroke.9 In addition, infant and child mortality rates are significantly higher in rural areas than in urban areas.8
These disparities have been linked to barriers to health care access, such as greater financial burden, scarcity of services, lack of trained physicians, and insufficient public transport.10,11 Qualitative studies on the experiences of individuals with chronic illnesses living in rural areas shed light on additional burdens. In a thematic synthesis of 62 qualitative studies, Golembiewski et al12 described challenges navigating care in the rural environment, such as lengthy travel for routine health services, reliance on social supports for transportation, and suboptimal quality of clinicians, services, and technology in their local area; challenges navigating the health care system, such as delays in care trying to obtain appointments, lengthy wait times during appointments, and disjointed care; and challenges affording care, such as high health care costs being compounded by costs of travel to appointments, overnight lodging in some cases, and time away from work in addition to a backdrop of economic hardship. Individuals also experienced a disconnect between illness experience and rural culture. For example, participants across studies shared that rural communities tend to value self-reliance and stoicism, leaving them feeling like they needed to “power through” chronic illness or else experience a feeling of failure to live up to their responsibilities to their family and community.12
Approximately 61% of individuals living in Vermont live in rural areas,13 with Maine and Vermont having the highest proportion of population living in rural areas in the United States.13 Simultaneously, Vermont is estimated to have the highest prevalence rate of T1DM among people age 19 and younger in the United States, with an estimated prevalence of 79.6/10 000 person-years.14 Thus, there is a dire need to explore how parents of children with T1DM living in rural communities perceive their experiences to determine how best to meet their unique needs for support. The purpose of this reflexive thematic analysis was to explore the experiences of parents of children diagnosed with T1DM who are living in rural areas.
Qualitative research is a means of giving voice to participants and “can put flesh on the bones of quantitative results, bringing the results to life through in-depth case elaboration.”15 Qualitive approaches can shed light on meaning, experience, culture, beliefs, and values. In qualitative inquiry, the situated context—or an individual’s subjective perspective, shaped by personal experience—of participants is viewed as a key element to understanding and interpreting phenomena.16 Thus, objectivity is seen as a myth. Instead, the individual participant is viewed as holistic system who engages with others in “interacting worlds of experience” and cannot, and should not, be reduced to parts to be explored separately.16
Thematic analysis is a type of qualitative research method “for developing, analyzing and interpreting patterns across a qualitative dataset, which involves systematic processes of data coding to develop themes.”17(p5) There are many different approaches to doing thematic analysis. Reflexive thematic analysis is one such approach that emphasizes the use of reflexivity, or “a disciplined practice of critically interrogating what we do, how and why we do it, and the impacts and influences of this on our research,” to code data and develop themes within a data set.17(p5) Researchers are encouraged to use their subjectivity, or “who we are, and what we bring to the research, ranging from our personal identities and values, through to our disciplinary perspectives,” as a valuable resource that is essential to the research process.17(p13) Thus, reflexive thematic analysis recognizes not only the participant as a holistic being but also the researcher as a holistic being who harnesses subjectivity through reflexivity.
The second author recruited a convenience sample of participants in collaboration with local school nurses at multiple levels (elementary, middle, and high school), a diabetes care and education specialist, and Vermont Family Network, a social support family network. These groups were provided with a description of the study and asked to share study information with parents who may be eligible to participate. Individuals who were interested in participating contacted the second author directly to schedule an interview. Due to COVID-19, interviews were conducted via video conference or phone based on participant preferences. Individuals were eligible to participate if they were 18 years or older and self-identified as a parent or guardian of a person who was diagnosed with T1DM within the last 10 years who was living in Vermont. Recruitment continued until the authors determined that there was sufficient information power to respond to the research question, or saturation.17
The University of Vermont Institutional Review Board approved this study. Once identified as an interested participant by local collaborators, the second author contacted participants to schedule an interview at a convenient time. Participants were given an information sheet and provided verbal consent to participate. Interviews were semistructured, used the questions listed in Table 1, and lasted 30 to 90 minutes. Interview questions were developed collaboratively by the research team, including an expert in qualitative research and an expert in diabetes and care of pediatric populations and their families. All interviews were audio-recorded but not video-recorded. Interviews were conducted and transcribed verbatim by the second author. The second author did not have previous experience with qualitative research but had previously worked with children with diabetes and their families and received mentorship and training on how to conduct qualitative interviews. Transcripts were reviewed by the first author, who has extensive experience with qualitative research,
Data were analyzed using Braun and Clarke’s17 approach to reflexive thematic analysis. Reflexive thematic analysis is a theoretically flexible approach to producing themes from data. Researchers may approach data from diverse theoretical perspectives, which in turn shape how themes are derived. Researchers must be reflexive and theoretically aware to identify ways that ontological and epistemological assumptions impact analysis. In this study, data were analyzed using a critical realist lens to interpret data and develop themes related to support and family life for parents of children with T1DM living in a rural community. The authors aimed to identify rich semantic-level themes that stayed close to the way that participants described their own experiences to us while using interpretation as a means of exploring why certain patterns of meaning mattered in relation to the research question.
Braun and Clarke17(p230) conceptualized themes as “patterns of shared meaning underpinned by a central organizing concept.” Themes were actively generated using researcher expertise and subjectivity to interpret findings rather than simply describing topic summaries. The authors applied a 6-phase process to generating themes from within the data, illustrated in Table 2.
Based on recommendations by Braun and Clarke,17 Tracy’s18 8 “big-tent” quality criteria were used to evaluate the quality of this study. The authors deemed this study to be a worthy topic based on the lack of understanding of the unique support needs of parents of children with T1DM living in rural communities. Rich rigor was established by including a sample that captured a variety of experiences, and interviews were robust and thorough to capture rich accounts. Interviews continued until authors felt confident data were sufficient to substantiate meaningful and significant claims, amounting to 122 pages of verbatim transcription. Sincerity was achieved through honesty and transparency in reporting data, including keeping an audit trail reviewed by all authors. Reflexive journals were kept throughout data analysis to encourage self-reflexivity. The authors have included thick description of findings to illustrate how themes were selected to enhance credibility of findings. In addition, multiple authors participated in data analysis to understand data from different perspectives, which Tracy18 refers to as “crystallization.” The authors believe the quotes used to illustrate findings evoke resonance, presented in a way intended to have artistic impact on readers. Findings contribute to the understanding of the needs of parents of children with T1DM living in rural areas, which the authors contend adds a significant contribution to the current research climate. Data were collected and analyzed ethically. Finally, the methods and approach align with the study aims, and conclusions meaningfully address the stated purpose, achieving meaningful coherence.
In total, 11 parents participated in this study, including 1 parent who described experiences with 2 children diagnosed with T1DM. Participants ranged in age from 31 to 51 years (M = 42.6, SD = 5.5) and were mostly female (n = 10). Their children were mostly male (n = 8), were diagnosed between the ages of 1 and 13 years old (M = 6.5, SD = 4.0), and were diagnosed from 4 months to 14 years ago (M = 5.6, SD = 4.1). One participant was a foster parent and then adoptive parent to her child, and in this case, the child was diagnosed 6 weeks prior to her foster placement. Data on race, ethnicity, and socioeconomic status were not collected.
Across these accounts, the authors identified 5 themes that captured the experiences of parents of children diagnosed with T1DM in a rural community, including enduring emotional traumas, living life on call, adapting to everyday challenges, lacking a safety net for support, and finding a rhythm. Themes are described in detail in the following sections.
Participants described feeling initially “shocked,” “devastated,” “scared as hell,” and “deeply depressed” after first discovering that their child had diabetes. As one shared, “The most difficult thing for me was the emotional trauma of the diagnosis.” Another said, “A lot of it was more psychosocial and emotional I think for me just a huge feeling of sadness that he was starting out life, like with a really you know, in my opinion, shitty disease.”
Many described that they worried about what their child’s future would hold and grieved the life that they had hoped for their child. One shared, “When she was diagnosed I think the life we had envisioned for her and her future just suddenly changed. Like, I think we felt despair that she would not have that kind of idyllic life I guess we had imagined.” Another shared, “I remember just feeling like it was literally the end of my child’s life.” Several described having “shattered dreams” and a feeling of “doors closing” for their child based on the diagnosis. As one said, “It was . . . feeling like the possibilities for him were already becoming, you know, like you know they weren’t endless starting out his life. Like it took some things away.”
In the face of their own grief and fear, participants had to provide reassurance to their children, who were often “terrified” and enduring repeated painful procedures. Some described needing to “force” or “hold down” their children for finger sticks and injections. One described:
People were coming in to do things to my son to keep him alive, but that like maternal instinct to tell them to stop was right at the edge. Because he was just so scared and screaming and needles are coming at him and stuff.
Participants shared that they wanted to be strong for their children, and several told stories of putting on a “brave face” for their child and then escaping to “break down” in a private place. For example, one shared that she “had to go find a bathroom and fall apart” in the middle of an educational training: “You hold it together so much for your kid, and then you’re like, okay I need to go sob in a bathroom somewhere because, like, this poor girl.” Another described trying to manage her own fears about her son’s variable blood glucose levels:
For me to see blood sugars rise was really disconcerting, so I had to kind of check my own emotions and not let him see those. . . . It’s just the way you present yourself to kids gives them a sense of safety or gives them a sense of fear.
In addition, the initial diagnosis often caused major life disruptions that increased initial stress. For example, several participants described leaving their jobs, facing financial uncertainty, and needing to relocate their families to be closer to informal support people or to health care facilities. One shared:
I will say it’s been a huge education for us around the fact that he needs to be near a clinic that has the capacity to do all the things that he needs for his diabetes. And the clinic that was closest to us was 3 hours away.
This family moved to an area closer to resources. Others described long travel times to frequent appointments that disrupted their ability to work consistently or meet the needs of other children.
Most participants felt that diabetes was “all consuming,” and many shared that “it all fell on me.” For example, participants said, “I was really completely consumed by this and very stressed” and “This is what I spend my life doing. I’m just, it consumed my life. This is all I do.” Several shared that being “the sole person” created challenges in their partner relationships, for example saying, “The sense of loneliness is palpable.”
Participants described feeling “isolated” and “living in fear” as they carried an enormous sense of responsibility for their child’s life. One said, “It felt like we had 5 hours of education and then we had to go keep our kid alive,” and another said, “Very overwhelmed by the amount of logistical things that we didn’t know 48 hours before and now we were expected to go home with this person that we loved and keep them alive. There’s just a lot of fear.” One summarized, “I was terrified. . . . It can kill you, you know. Insulin can kill you. So I was so scared.”
Participants often carried a sense of ownership over their child’s health outcomes and interpreted their child’s blood glucose levels as personal successes or failures. One shared:
I was now the one making things right or wrong for my daughter. You know, like, I was screwing up the doses or I was doing well. . . . I felt incredible stress and I would say like guilt when the doses were wrong and this was my fault.
This often led to a feeling of “failure,” even for things that participants recognized were outside of their control.
Several also shared particular fears that they would miss something at night, such as “worrying that maybe this adjustment is going to be too much and he’s going to crash in the middle of the night and I’m not going to know it.” Another said:
[There was an] overwhelming feeling that my child would pass away in the middle of the night, or that I’d miss an alarm. Or I’d sleep through an alarm ’cause I was beyond exhausted. . . . It more primarily was like in a feeling of like, I have to get this right. Like, my child’s long-term health, you know, depends on it.
Although this typically improved with the use of continuous glucose monitoring, most participants still described that sleep was “forever changed” and carried new meaning to them in their lives as a time of fear rather than rest. Many also drew comparisons to experiences of “taking a newborn home again,” worrying how they would take care of them or “like nursing [a baby] all over again, getting up in the middle of the night and feeling delirious.”
Participants also described literally being “on call” for partners, teachers, school nurses, or other family members or friends whenever they left their child in someone else’s care. Participants described “checking my phone constantly” and “I’ve always made myself completely available.” Some participants identified this as a challenge with living in a rural area where cell service was not reliable, which exacerbated concerns for parents who were already experiencing a lot of fear about being away from their children.
Participants felt that everyday life had become more burdensome and required “organization” and “planning” to complete tasks that had once been simple. Many talked about the effort and forethought that accompanied mealtimes and snacks for their children: “Basically it changed the dynamic in the way that you can’t just sit down and enjoy your family time. The diabetes is there and it shows its face every single time you want to do something.” Another shared, “I guess the hard part was adapting, you know, our lifestyle. Especially initially, like around the idea that every single time she wanted to eat, like there was work to be done.” Others talked about the preparation and sheer number of items needed whenever leaving the house. One participant shared:
We couldn’t just go and do something as a family. I had to involve this thing that I liken to a toddler. It’s like having a toddler that never grows up. You bring it with you everywhere. You are constantly tending to it.
As one participant summarized, “It just seemed like we were literally like, weighed down, with this emotional and medical baggage.” Participants also described events that once brought joy, such as eating out, traveling, or attending a party, were now times of “stress” and “difficulty.”
Participants also talked about the challenges of adapting theoretical education that they received about diabetes to real-world settings. As one shared, “You can do it in a setting like in a hospital or controlled setting, but when you’re out in real life, it just doesn’t happen.” For example, one participant described monitoring her 13-monthold child’s intake:
We’re trying to monitor how much she eats and count the carbs and then figure out the dose and get the injection into her within 30 minutes. But newborns don’t eat fast. You know we’re trying to calculate, alright, how much food ended up on the high chair, or on the floor? How much actually went into her body? So mealtimes were really, really stressful just because of that.
Participants felt that they understood instructions for counting carbohydrates and determining dosages in training examples but struggled with the impracticalities of measuring their child’s precise intake and accounting for variability in their child’s activity level, hormones, and other factors. As one shared, “There’s no explanations, no reason. There’s no consistency. One day to the next of eating the same food, and the same activities seems to result in different things every single time. That probably was the hardest to grasp.” Participants also noted challenges adapting their training to a diet based on whole foods, home-grown foods, or foods bought in bulk that did not have nutrition labels. Many referred to a “trial and error” learning process. In addition, participants shared that they often relied on the “huge binder” given to them during training sessions and wished for more compact and technology-based resources.
Participants described a general lack of support available to them. Many shared that their child’s health needs limited options for child care, which put a strain on their relationships and needs for self-care. One participant shared, “It was very, very difficult to find child care. Somebody willing to learn to do this. We didn’t have child care locally for a long time.” Several mentioned that it was particularly difficult to find a babysitter: “I never took time for me. My husband and I, we never even go on dates. You know, it was hard to find like a babysitter ’cause you couldn’t just get a babysitter. You had to have someone who was trained in managing diabetes.” This participant shared that her relationship with her partner suffered as a result. Another shared, “It does obviously make it difficult as a single mom to try to meet someone or be in a relationship because I feel like my life is controlled by a number, by my son’s glucose number.” Several described the challenges of not have a “safety net” to support them in their everyday lives: “Not having, you know, not really having somebody who could like step in. You know if I needed to run out for an hour and that we just didn’t have that. That didn’t exist.”
Most participants also shared that they carried the primary responsibility for providing training to support systems, including school nurses. Some shared that their child was the first person at the school to have diabetes, and several shared that their children’s school staff were “highly anxious.” For example, one participant shared:
We had trained many people on how to manage diabetes and trained her child care staff. We did lots of training. So we were not nervous, but boy, the anxiety of this nurse with [our daughter] coming to school made us feel like hyper anxious, and they got her a one-on-one aid. Which the diabetes educators are like, don’t let them get her an aid. It’s gonna make her stick out, and she doesn’t need that. But no, the school got her one.
Others described preparing educational trainings and helping school staff manage anxiety: “Sending her back to school was another huge panic moment. . . . The biggest piece of that was actually managing everyone else’s anxiety. Doing all the education piece around taking care of this kiddo.” Most participants also shared that their child’s school had a part-time school nurse who was often not present throughout the week, which added stress and concern. Several parents described phone calls with school staff in which they talked staff through their child’s care, often describing themselves as a calming presence helping a school staff member who was “panicked” or “anxious.” Many participants expressed that they wished there was more formal training available for others who could help support their children. As one summarized, “When reaching for support, for sure, it was not only for me, but the support comes to me by the people around me being supported and education. Otherwise they won’t take care of [my son].”
In addition to feeling physically unsupported, participants also often felt emotionally isolated, frequently sharing that “others just don’t understand.” Participants talked about the challenges of diabetes being invisible and many of its burdens being hidden:
I think most people don’t understand how stressful and how hard this disease is to manage. I don’t feel like anyone understood the kind of stress we were under and, you know, what a disruption this was to our lives and just how hard every day was, so it felt very isolating that way, ’cause I think people just didn’t understand it.
Participants described “public stigma” and being perceived as a “helicopter mom” when they needed to provide care to their child in public spaces, such as giving their child a shot or providing a snack to their child. One shared, “I almost felt like I was like the breastfeeding mom in public,” and another said, “People even said like, they thought he was like a prima donna at the ice rink, ’cause I was there. Like, ‘Oh look, his mother’s feeding him juice.’ Yeah, they didn’t realize that he had type 1 diabetes.” Participants described feeling “lonely” and “isolated” within their relationships, their families, and their larger communities.
Participants shared that after an initial period of adjustment, their lives took on a new sense of “normal.” As one shared, “Now, it’s mostly background noise,” and another said, “For the most part it is just a part of our lives now.” One participant described that it was “a journey” to reach a place of acceptance and lifestyle adjustment:
It wasn’t until really a year ago that I said, “This is my life,” you know. Otherwise I could just sit by and watch it happen. So I got really healthy. I started working out. I just took control again after a number of years of feeling like after [my child] got the diagnosis, like, I don’t know, I don’t feel like I had any control.
Participants also shared that connecting with other parents who had been through similar experiences was helpful in maintaining a positive outlook for the future. One said, “I would have loved someone, even if it was a phone call, someone out there to follow up after diagnosis. Like a patient or family advisor or somebody who could have been like, it’s okay. I know where you are, you are gonna be okay.” Another said, “I think for me it is always good to see people thriving with it and doing well with it. Just even being around them is helpful. . . . It doesn’t necessarily have to be all diabetes talk, but just knowing things will be, you know, relatively normal.” Several participants shared that there were limited opportunities for these connections in small communities, where they often felt like they were “the first” family in the area with diabetes. Although online support groups provided a substitute for local connections for some, most shared that online groups did not provide the support they were seeking:
A lot of these groups I feel, and it’s my personal opinion, that it’s a little bit of an obsession. Around the diagnosis and I just can’t do it every day. . . . I want to talk to someone on the phone, I want to have a relationship with them. I want to help them and get help if I need it.
Many still shared concerns about their children’s long-term well-being, particularly for teenage and young adult children. Some expressed fears about their children going to college, “rebelling” behaviors, management of diabetes and alcohol, and the need for their child to find a sustainable job with health benefits. As one participant summarized:
I am sad every day for my son. I am scared of him being able to take care of himself as he grows up. A lot of worry. Like I worry a lot about him not only care for his, taking good care of himself and being healthy, but being able to afford insulin when he’s in his 20s. And, you know, getting his first job in health insurance and being able to afford everything that comes along with diabetes. . . . It’s emotional, it’s stressful, it’s burnout. It’s you know, overwhelmed and grief. And quite honestly, I don’t know that it goes away. I don’t know that it will ever go away.
At the same time, many participants also described “hidden blessings” related to their child’s diagnosis. Some mentioned that diabetes had become part of their family’s “identity.” As one shared, “It’s kind of given our family a purpose in a weird way.” Several shared that their experiences “brought us closer” and developed unique skills in their children, such as “independence,” “resilience,” “confidence,” “responsibility,” and “self-advocacy.”
Findings highlight the experiences of parents of children with T1DM living in rural areas. These results are similar to previous studies on the experiences of parents of children with T1DM, indicating a shared experience with others regardless of rural-urban location. Themes relate to those identified by Smaldone and Ritholz6 in a qualitative content analysis on the experiences of parents of children who were diagnosed with T1DM at age 5 years or younger, including the “frustrations, fears, and doubts” of the diagnostic experience; “adapting to diabetes”; feeling isolated from friends and family who lacked understanding of T1DM; and normative developmental transitions becoming times of high stress. These themes are also in line with the overarching essential theme of “striving to live an ordinary family life, yet feeling and living very differently,” identified by Iversen et al3 in an interpretive phenomenological study of parents of young children with T1DM, and the visible “pursuit of ‘normal’” identified in a thematic analysis by Marshall et al.5 Present findings emphasize teenage and young adult years as a time of increased worry for parents, which is also consistent with previous literature.19
Results add to existing studies by identifying unique challenges for those living in rural areas, summarized in Table 3. Primary areas of concern for participants included distance from both formal and informal support systems, unreliable and/or insufficient technological resources, and lack of understanding of T1DM by their communities, including vital areas of support such as child care and schools. Participants shared that they were often responsible for training family members, friends, babysitters, child care workers, school staff, and even school nurses about their child’s needs, often while they themselves were still overwhelmed with learning how to manage their child’s care. Providing recorded education programs for family members, school nurses, and child care providers can provide basic education about diabetes and its treatments.
A general lack of understanding about T1DM often led participants to feel stigmatized and isolated during a time that was already emotionally distressing. Diabetes care and education specialists working in rural areas must consider ways to provide training and support at the community level to reduce parental burden and decrease feelings of isolation. In addition, those working in rural settings may not have the benefit of having a social worker on the clinical team. Diabetes care and education specialists can screen parents for stress levels to identify those who may benefit from referrals to social workers or mental health professionals. Connecting newly diagnosed children and families with others who have the lived experience can also be beneficial. In rural settings, this may be accomplished by sharing information about family support organizations, such as the Vermont Family Network, whose mission is to support all Vermont children, youth, and families, especially those with disabilities or special health needs.
This study was limited to those living in Vermont. Further exploration of the needs of other rural communities is warranted. In addition, data related to racial, ethnic, and socioeconomic diversity were not collected. Future studies should explore the intersections of social determinants of health on parent experiences related to T1DM.
Although parents of children with T1DM living in rural areas share similar experiences to those in previous studies, they also face unique challenges that limit support and exacerbate feelings of stigma and isolation. Diabetes care and education specialists working with families in rural areas should carefully assess barriers that may complicate care and explore ways to provide training and support at the community level to alleviate additional stressors on parents.
The authors wish to thank the participants for sharing their stories with us. The authors also wish to thank Lisa Bolduc-Bissell from the University of Vermont Medical Center and Jamie Rainville from the Vermont Family Network for their assistance in recruiting participants and Sue Kasser for her mentorship.
Laura Foran Lewis https://orcid.org/0000-0002-8469-0699
From Department of Nursing, University of Vermont, Burlington, Vermont (Dr Lewis, Ms Brower, Prof Narkewicz).
Corresponding Author:Laura Foran Lewis, Department of Nursing, Burlington, University of Vermont, 216 Rowell Hall, 106 Carrigan Drive, Burlington, Vermont 05455, USA.Email: Laura.Lewis@med.uvm.edu
