Abstract
Purpose
Mothers of female youth with a physical disability experience stress as their child prepares for adulthood. Interventions that promote parental coping are needed to better support families. This study sought to identify the concerns and coping strategies of mothers of female youth with physical disabilities to inform a family-centered intervention.
Methods
One-on-one semi-structured interviews probed mothers’ concerns and coping strategies as their daughters with physical disabilities prepared for adulthood. Dual review of de-identified transcripts was used to identify relevant themes using interpretive phenomenological analysis.
Results
Twenty-one mothers of daughters with physical disabilities participated. Five overarching themes describing mothers’ concerns for their daughters emerged. Mothers were concerned about barriers in helping their daughters 1) maximize independence in life skills, 2) achieve empowerment, 3) develop meaningful relationships, 4) maintain good health, and 5) successfully transition to legal adulthood. Mothers described coping strategies to address these concerns, including intentionality and persistence in teaching their daughters new skills, surrounding their daughters with affirming adults, and adapting their own goals.
Conclusions
Mothers’ concerns centered around how barriers, biases, and lived experiences challenged their life goals for their daughters. Nonetheless, they identified several coping strategies to overcome most of these concerns.
Introduction
The transition to adulthood is a critical period for youth that sets the foundation for adult functioning and well-being. 1 Typical healthy development during this transition includes achieving independence in self-care, learning to navigate adult relationships, assuming more adult roles and responsibilities, and developing a positive sense of self.1,2 Families play a central role in supporting their child toward this end.3–5 While true for all youth, this is particularly true for those with pediatric-onset physical disabilities. The support and guidance of parents can positively impact their child's educational, social, and emotional development as well as medical autonomy.6–8
However, this can also be a particularly challenging time for youth with pediatric-onset physical disabilities and, relatedly, their parents. Youth with physical disabilities such as spina bifida (caused by incomplete development of the spine), cerebral palsy (a congenital movement disorder), and pediatric-onset spinal cord injury are a diverse group. In addition to having variable physical disabilities, some also have neurocognitive challenges and coexisting chronic health conditions such as neurogenic bladder, neurogenic bowel, and seizure disorders. Together, these can contribute to delays in achieving expected milestones such as autonomy in self-care, developing social competency, and starting romantic relationships.9–14 These delays, compounded by culminating factors such as a youth's daily physical care needs, frequent health care visits, surgeries, hospitalizations, lack of social support, and socioeconomic stressors, all contribute to parental burden.15–17 This burden, in turn, is related to parental reports of high levels of stress, depression, and anxiety while lowering quality of life, isolation, and sleep quality, as well as feeling less competent as a parent compared to parents of nondisabled adolescents.18–21 A high degree of caregiver burden and fatigue can negatively impact the quality of life of a youth with a physical disability. 22
A resilience-disruption model of family functioning has been suggested to understand and optimize family response to both typical developmental and disability-related stressors during the transition to adulthood. 23 This model recognizes that families of a youth with a pediatric-onset physical disability will experience multifaceted challenges during this transition to adulthood, but that these families may develop adaptive coping mechanisms as a result. 24 For example, many youth with a neurogenic bladder require intermittent catheterization throughout the day. Learning independence in this skill can be challenging. Parents of youth who are not independent in self-catheterization report a significant degree of burden.25,26 However, adaptive parenting skills can promote youth independence in this area. 7
To optimize the outcomes of these youth and the parents who support them, there has been a call for family-centered interventions that improve coping abilities. 23 In response, a multi-level online intervention is being developed to support youth with physical disabilities and their parents during the transition to adulthood (AbilityForLife.org). The intervention will promote youth-parent conversations on transition-related topics, including sexual and reproductive health. As mothers are more likely to have such conversations with their female daughters than other family members, the intervention will initially be tailored to female youth and their mothers. 27 However, there is currently a paucity of literature describing the specific stressors and coping mechanisms of mothers of these female youth to inform the intervention. In this context, the goal of this study was to identify the concerns of mothers of female youth with pediatric-onset physical disabilities and the strategies these mothers use to overcome their concerns.
Method
This work was a part of a larger qualitative study to inform about a transition readiness intervention, including mothers’ preferences for a disability-specific sexual education component. 28 Institutional Review Board (IRB) approval was obtained before participant recruitment (HUM00209888).
Research team
The research team was composed of a pediatric urologist (CS), a research manager (JK), a medical student (PD), a certified sex therapist and licensed social worker (DW), a clinical and rehabilitation psychologist (CK), and an expert in community-centered research and preference methodology (JB). CS, JK, DW, CK, and JB have expertise in disability research and qualitative research methods. PD was trained in qualitative methods for the purpose of this study. A member of the research team has lived experience as a person with a physical disability. Five team members identify as female and one as male.
Study sample
Any English-speaking parent, biological or adoptive, of a female youth age 7–26 with a congenital or pediatric-onset physical disability was invited to participate. Informed by the underlying research questions of the larger qualitative study, this age range for the daughters was chosen to include the perspective of parents preparing for or experiencing the changes associated with puberty, which occurs early in some females with physical disabilities, to the maximum age for eligibility in young adult programs in the state of Michigan and remaining on a parent's insurance. 29 Parents whose daughters were diagnosed with a physical disability after the age of 18 were excluded. A physical disability was defined as a condition associated with a mobility impairment (e.g., spina bifida, cerebral palsy, spinal cord injury), which may or may not be associated with a cognitive disability or medical comorbidities.
Recruitment
Purposive sampling was conducted to ensure that the perspectives of parents of daughters with a range of physical and cognitive abilities and diverse geopolitical influences were included. Parents of a female child age 7–26 with an International Classification of Diseases (ICD-10) diagnosis of spina bifida, cerebral palsy, or spinal cord injury at the University of Michigan were identified. Parents were recruited via a mailed letter. The mailing was staggered to better facilitate prompt scheduling, with an initial focus on parents of a child for whom a pediatric-onset physical disability could be confirmed without a chart review (e.g., those ages 7–18). Although the initial recruitment plan was to later send letters to parents of daughters aged 19–26 after confirming pediatric onset of the disability, ongoing analysis from interviews suggested a likely geopolitical influence of the communities surrounding the University of Michigan. Specifically, the perspectives of parents did not reflect both sides of ongoing debates about controversial topics relevant to sex education. Therefore, providers at two tertiary referral centers in the southern United States contacted several patients they believed could offer diverse viewpoints. If they expressed interest, they were emailed the recruitment letter. All participants were asked if they knew any other potentially interested participants at the end of their interview.
Interested parents contacted the Research Manager (JK) who explained the study, evaluated eligibility, and obtained consent. A total of 38 mothers expressed interest, 26 completed screening, and 21 participated; the remainder did not follow up on emails or attend their interview.
Qualitative data collection
The semi-structured interview guide was developed by two members of the research team (CS and DW) based on their clinical and prior research experience with adolescents with disabilities and reviewed by two mothers of adolescents with disabilities for refinement.27,30,31 The guide was modified during the study based on new information learned about the parents’ perspectives (Appendix 1). Basic demographic and disability characteristics were collected. The hypothesis was that differences in mothers’ concerns and coping would be based on physical and cognitive abilities of the daughters; thus, race was not assessed. 32
Mothers participated in one-on-one in-depth interviews with the Research Manager (JK) via the institution's Zoom account. All interviews were recorded and transcribed verbatim after the participants were assigned a study identification number to ensure confidentiality.
Data analysis
All interviews were analyzed by two members of the research team (JK and CS) using interpretive phenomenological analysis (IPA). IPA achieves a comprehensive understanding of the participant's experience through thematic analysis.33,34 In alignment with IPA procedures, the analysts engaged in personal and interpersonal reflexivity at the onset and throughout the study. 35 Specifically, they examined how their experiences as providers and as a disabled woman may impact their interpretation of the data. They also reflected on how the identity of the research team members may have impacted participants’ responses. For example, one provider recognized that she focused on the medical aspects of transitioning to adulthood. However, during member checking, or the process of checking back with study participants to review summaries of results, a mother noted she more holistically thought of the transition to adulthood as supporting her daughter in pursuing a “fulfilled life…the life she wants” (Participant 2). 36 Although results overall supported the resilience-disruption model, the analysts noted areas where this was less applicable (e.g., methodological reflexivity). 35 The analysts also considered how the reputation of the researcher's institution, the availability of transition clinics, and the dominant political views of the institution and city may have influenced the responses of participants (e.g., contextual reflexivity). 35
The authors reviewed each interview, taking notes regarding the findings and their reflections on the data based on the research question. They then identified themes that reflected the essence of representative statements, which were organized into overarching and sub-themes for each interview. After analyzing the first five interviews, the authors reviewed the emerging themes to identify connections across interviews. 37 This resulted in initial overarching and sub-themes, which were then entered into Nvivo (QRS International) software. 36 These were utilized in analyzing subsequent interview transcripts. The themes were modified, new dimensions of the existing themes were noted, and additional themes were added during subsequent analysis as appropriate. At 21 interviews, saturation of themes was met as no new theme or dimension was identified in a subsequent interview. 38 Representative quotations regarding the dimension of each theme were selected to describe the perspective of mothers. The researchers reflected on the overarching and sub-themes, applying the perspective of the resilience-disruption model of family functioning. Trustworthiness of the data was supported by inclusion of parents and an individual with a disability on the research team, prior experience working with young women with disabilities and parents for the researchers, and engagement in reflexivity by data analysts. 33
Member checking was then performed with three mothers of daughters who had varying disability types, physical abilities, and cognitive abilities. 36 Mothers were shown a list of the overarching themes identified through the analysis and asked if they felt they were an accurate representation, what the theme meant to them, and if any important items were missing. Each mother agreed with the themes, noting how it applied to their worry for their daughter. These applications were reflected within the sub-themes. No additional theme was identified.
Results
Participants
Twenty-one mothers participated. All participants were females with daughters ages 7–26 years (median 13, IQR 4.5; nine ages 7–12, 10 ages 13–18, two older than 18). Nine of their daughters had cerebral palsy, 10 had spina bifida, one had a spinal cord injury, and one had a different congenital cause of a physical disability (Table 1). Eight either had an individualized education plan while at school, were in a lower grade than expected for age, or were in special education. Thirteen used a mobility device while at school. Four of the participating mothers were known to the analysts, two of whom were mothers of patients of CS, and two who had prior knowledge of JK. Overall, participants mentioned that they felt this topic was important and relevant and appreciated being involved. As one mother stated, “I’m actually very happy that you included me…” (Participant 14).
Participants’ daughters’ demographics.
CIC: clean intermittent catheterization; IEP: individualized education plan; ed: education
Overarching themes
Five overarching themes describing mothers’ concerns for their adolescent daughters as they prepared for adulthood were identified. Their greatest concerns centered around the challenges and barriers they encountered helping their daughters 1) maximize independence in life skills (struggles in learning new skills, discrepancies in motivation to learn), 2) achieve empowerment (self-consciousness, discrepancies in life goals), 3) develop meaningful relationships (opportunities for social interactions, social difficulties, navigating intimacy), 4) maintain good health (finding providers), and 5) successfully transition to legal adulthood (disability stigma, lack of accessible adult programs, insurance changes, logistics, balancing benefits and restrictions). These overarching themes or concerns were shared by all mothers who participated, regardless of their daughter's disability type or abilities. However, the sub-themes regarding barriers faced and mothers’ strategies were at times influenced by their daughters’ abilities and comorbidities in the context of societal stigma. Differences were not noted based on diagnosis alone. Mothers of daughters of all ages expressed concern about nearly all overarching themes, with mothers of older daughters primarily discussing concerns about successfully transitioning to legal adulthood. Full representative quotations are shared in Table 2.
Representative quotations for overarching themes and sub-themes.
Maximize independence in life skills
Recognizing that, as parents, they are “not always going to be [around]” to help (Participant 8), maximizing their daughters’ independence was a common concern for mothers.
Mothers’ definition of independence in life skills
Mothers identified the need for their daughters’ independence in two distinct areas: accomplishing general activities of daily living and performing health-management tasks. By helping their daughters learn to dress, cook, care for their own daily needs, and do their own errands, many mothers hoped their daughter would be prepared for adult life generally and ideally to “live on her own” (Participant 20) and be a “member of society” (Participant 19). Teaching their daughters to perform their own medical self-care was also a priority, especially if their daughter was on a bladder or bowel program.
Barriers to independence in life skills and mothers’ strategies
Most mothers described several barriers to their daughters’ independence. Some found their daughters struggled to learn new skills, whether due to physical challenges (e.g., finding a way they could achieve a task) or due to cognitive delay (e.g., remembering all the steps to a task). Teaching their daughters required persistence despite difficulties, regular prompting to help their daughters remember tasks such as using a “verbal cue,” and patience in allowing their daughters to “struggle” to complete tasks even when progress was slow (Participant 8). If a task was especially physically difficult, mothers took different approaches. Many mothers wanted to affirm that their daughters could do anything and have “no restrictions,” even if this meant they needed to learn “a different way of doing it” (Participant 12). Alternatively, a few mothers described pushing their daughters to do everything possible for themselves but also to understand that “everybody has limitations” and to be confident asking for help when necessary (Participant 16).
More difficult to overcome was a discrepancy between the mother's and daughter's motivation towards independence, in particular around medical self-management. Some mothers noted their daughters did not “seem to have an interest in being independent,” particularly with their “voiding needs” (Participant 10). Mothers coped by recruiting “doctors” and others “outside of [the] family,” including occupational therapists, to encourage and teach their daughters (Participant 3). Mothers also coped by adjusting their own expectations regarding the timing of independence-related skill achievement, opting to wait to push their daughters to master these skills until their daughters showed “the desire” to learn (Participant 20).
Achieve empowerment
Mothers were concerned about promoting their adolescent daughter's sense of empowerment, which they felt would facilitate greater happiness, healthier relationships, and the motivation and capability to function in and influence society.
Mothers’ definition of achieving empowerment
Mothers defined empowerment as being both self-confident and capable of accomplishing life goals. Self-confidence was described as their daughter “being sure of herself in the world,” whether interacting with peers or in the community more generally (Participant 21). Additionally, mothers hoped their daughters would aspire to and achieve goals that were big, proportionate to their daughter's abilities. This ranged from learning to self-advocate, going to college, and finding a job. Overall, the underlying sentiment behind mothers’ life goals for their daughters was to help their daughter achieve “the life she wants and not feel restricted by anything” (Participant 18).
Barriers to empowerment and mothers’ strategies
Several barriers to empowerment were noted. Daughters’ self-consciousness was commonly described, with daughters being aware of their differences from peers, such as being “the only one with a walker” (Participant 8). Mothers used a variety of strategies to build their daughters’ self-confidence. They commonly used verbal affirmation, such as one mother reminding her daughter of “faith-based scripture, you’re fearfully and wonderfully made” (Participant 8). Others involved their daughter in extracurricular activities they felt could “build her confidence,” such as “sports teams… theater,” and surrounded their daughter with “family members” who would provide a “positive relationship” (Participant 6).
Discrepancies between the life goals of mothers and daughters were another barrier commonly described. Some mothers wanted to push their daughter to accomplish big life goals such as move out of the house, “go to the [college] of her choice,” get married, or have children, but found their daughter was not interested (Participant 16). Alternatively, other mothers were concerned that their daughters aspired to goals they felt were not realistic due to their care support needs or health concerns, such as “getting married or having children” (Participant 4). When mothers aspired to bigger goals than the daughters desired, mothers described adjusting their goals, such as accepting their daughter getting a “two-year degree” instead of a four-year degree (Participant 16), while also “[pushing]” their daughters toward bigger achievements (Participant 20). Conversely, when daughters aspired to goals that their mothers did not think were safe or realistic, mothers sought more information from experts such as physicians, as appropriate, or described gradually explaining why the goal may not be feasible, so their daughter could “start processing that it may never happen” (Participant 4).
Develop meaningful relationships
Mothers hoped that their daughters would experience close, meaningful friendships and, for most, also have the opportunity for a romantic relationship.
Mothers’ definition of meaningful relationships
While mothers did mention their desire for their daughters to be accepted by peers and not “[made] fun of” for differences such as wearing a pull-up (Participant 10), they were more concerned with their daughters developing deeper friendships and for some, romantic relationships. Mothers desired friends for their daughter with whom they could not only spend time but also develop a “level of friendship” that allowed their daughter to feel completely open talking about “[her] disability” (Participant 4). Many mothers also wanted their daughters to experience “the dating scene” (Participant 5) and have a positive romantic relationship in which their daughter could “stay safe… and just stay true to herself” (Participant 1).
Barriers to meaningful relationships and mothers’ strategies
Mothers identified many barriers to meaningful relationships for their daughters, including the lack of social opportunities, especially in an environment “not overloaded with parental oversights” (Participant 20); a lack of peers with similar disabilities; and difficulties making friends due to social skills, such as not “[reading] social cues” (Participant 14) or a preference to “just be at home” (Participant 17). Similar to fostering their daughters’ empowerment, mothers often sought out extracurricular activities and any opportunities for their daughters to be around peers. Many mothers wanted their daughters to have both romantic and intimate relationships if they were interested. However, while several mothers felt their daughters were strong and could navigate decisions around intimacy well, others were concerned about this. One mother was concerned about her daughter being “pressured into something she doesn’t want to do or isn’t ready to do” (Participant 14), and another wondered if a “boyfriend would be patient and understanding” during intimacy (Participant 10). Many talked to their daughters about boundaries, “good touch, bad touch” (Participant 8), with some discussing “respect and timing and consent” related to intercourse (Participant 6).
Maintain good health
Given the often complex medical needs of their daughters and the ongoing need for consistent care, mothers described concerns for their daughters regarding both their health and healthcare.
Mothers’ definition of maintaining good health
There were several components reported to maintaining good health. First, mothers hoped their daughters would be able to stay in good health and avoid chronic pain as they aged. Body changes and “[gaining] weight” after puberty were concerns that mothers worried could make “mobility more difficult” (Participant 21). Additionally, mental health was described as an emerging concern, with several mothers noting their daughters were experiencing anxiety or were “sad all the time” (Participant 16). Finally, the “transition to [the]…adult side” was a source of “terror” for some parents who worried if their daughters would be treated with “the same level of compassion” by providers as they had been on the pediatric side (Participant 2).
Barriers to maintaining good health and mothers’ strategies
A key barrier to maintaining good health overall was difficulty finding adequate providers who were knowledgeable about their daughter's condition. This was especially difficult when it was time to find adult providers. Mothers chose to drive further for what they felt was the best care or find pediatric providers who agreed to continue seeing their daughter as an adult. Observing their daughter to personally “keep track of her mental health” was another strategy (Participant 8).
Successfully transitioning to legal adulthood
Mothers recognized the complex changes that becoming a legal adult would or did bring, ranging from graduating school to legal and insurance changes. Successfully navigating these changes was a significant concern for mothers, in particular, those with older daughters.
Mothers’ definition of successfully transitioning to legal adulthood
Successful transition to legal adulthood from the perspective of mothers would require a society that would fully embrace and support their daughters as adults. This included how they would spend their time after graduation, whether in traditional or non-traditional vocations, and ensuring disability-related policies that would afford their daughters both stability and the freedom to live their lives.
Barriers to successful transitions into legal adulthood and mothers’ strategies
The lack of true understanding and support of people with disabilities in the community made parents concerned about their daughter's adult life. In particular, they were concerned about how disability stigma would impact their education and career goals. One mother noted her daughter has to use the bathroom frequently and “misses more days” of school due to her disability, which resulted in “judgment” from teachers and administrators due to their lack of understanding. This mother was concerned that future professors or potential employers would similarly judge her, which may limit her “college and career” experience and opportunities (Participant 3). Conversely, mothers whose daughters would not pursue education or employment considered it “terrifying” to “figure out what [they were] going to do when school's out” given the lack of accessible adult programs that could both give their daughters a purposeful way to spend their time and help with their daytime care needs (Participant 2).
Several legal and financial barriers were identified. The logistics and decisions around establishing guardianship were intimidating and time-intensive, while balancing the benefits and restrictions of disability coverage was difficult. Mothers were concerned that disability coverage meant “no marriage and no baby” for their daughters (Participant 7). Becoming a legal adult also meant many daughters would need to “[switch insurances],” which raised questions about “what will the coverage be like” and if it would cover the supplies on which their daughters relied (Participant 3).
Mothers did not identify any strategies they used to cope with these concerns. They wished for society to be more understanding and supportive of people with disabilities and their families.
Discussion
Mothers of female youth with a physical disability in this study described multidimensional concerns during their daughter's preparation for adulthood. Mothers described their hopes for their daughter's future, including being as independent as possible, feeling empowered to seek life goals, engaging in meaningful relationships, experiencing good physical and mental health, and having a smooth transition to a fulfilling adulthood. Their concerns emerged from the ways in which lived realities, pervasive societal biases, and structural barriers challenged these goals. For most concerns identified, mothers described the parenting techniques they used to address their concerns, including persistence and patience when teaching new skills, as well as intentional, ongoing encouragement to work towards self-advocacy and empowerment. However, mothers struggled to identify strategies to address those concerns caused by structural barriers and societal stigma, such as a lack of accessible adult programs and balancing benefits and restrictions. Together, this supports the resilience-disruption model of family functioning for families with adolescents with physical disabilities, whereby families, namely mothers in this study, find positive ways to adapt and cope with the disability-specific challenges their children face in preparing for adulthood. 24
The overarching themes identified by mothers as significant concerns for their daughters align well with the domains of the Adolescent Well-Being conceptual framework. This framework was developed by the Partnership for Maternal, Newborn, and Child Health and the World Health Organization in conjunction with youth and adolescents to identify all areas needed for adolescent well-being (“domains”) as well as what is needed to achieve well-being for each domain (“sub-domains”). 39 Although parents were not prompted with questions based on this framework, the concerns they identified corresponded with all five domains, which include 1) good health and optimal nutrition, 2) connectedness, positive values, and contribution to society, 3) safety and supportive environment, 4) learning, competence, education, skills, and employability, and 5) agency and resilience. This suggests that these mothers’ sense of what is needed for their daughters’ well-being aligns with accepted, adolescent-driven definitions despite the conflicts in goals and priorities some parents described. This also suggests the overarching concerns of mothers of youth with and without disabilities may be similar. However, mothers in this study perceived that their daughters with physical disabilities faced different barriers and required different support than those without disabilities. These barriers are uniquely impacted by their daughters’ physical and cognitive abilities, comorbidities, and lived experiences with societal stigma.
The results of this study align with existing research in several ways. Parents of adolescents with physical disabilities in other studies have also described concerns about their child achieving independence.40–42 Parents in this study reported that learning new tasks was often difficult for their daughters. For some, this was due to the physical challenges. For others, this may have been related to the adolescent's cognitive abilities or executive functioning limitations (e.g., difficulties with planning), as has been reported as a barrier in other studies.7,43,44 Parents may also have difficulties relinquishing control as they transition responsibilities to their child.7,45,46 Discrepancies in expectations for independence between parent and child may be related to parents expecting more from these adolescents than their peers without a disability realistically do at that stage. 47 Interestingly, a qualitative study of adolescents with cerebral palsy aged 17–18 demonstrated that the adolescents did not feel the need to think about the future yet, as they assumed the skills needed for adult independent life would come automatically when they became adults. 48 Encouragingly, a longitudinal study of young people with spina bifida suggested that many continue to improve in self-management responsibilities well into early adulthood.9,21,49
However, it is also possible that there is a discrepancy between a parent's desire for their child with a disability to be maximally independent and their knowledge and ability to help them achieve this goal. In other words, parents may intend for their children to become independent but not know what strategies and techniques may enable or hinder this goal long-term. Indeed, many adolescents and young adults with physical disabilities are not as independent as they could be based on their abilities. 50 Whether intentional or unintentional, parenting behaviors around the time of adolescence predict their child's adjustment in early adulthood.6,51–53
There are several limitations to this study. These findings reflect the concerns of mothers who chose to participate, who may have different concerns than those who chose not to participate. Nonetheless, the goal of this qualitative study was to get an in-depth understanding of the concerns of a small but diverse group of participants in terms of physical and cognitive abilities, which this study accomplished. Participants in this study were primarily mothers of youth with spina bifida or cerebral palsy, who have many similarities such as their early onset and potential associated neurocognitive impacts; it is possible that mothers of youth with other physical disabilities impacting movement may experience different concerns and barriers.54,55 Additionally, it is not likely that every concern mothers experience in raising a daughter with a physical disability was captured, but instead only what came to mind when they were asked. Overlapping concerns among mothers suggest that the most significant concerns were likely identified. Race, demographics, and relationship status of mothers were not assessed, limiting the ability to assess the diversity of participants and family structures. These findings should be understood as the perspectives of participants who identified as mothers or mother-like figures, which may be different from those of other parents or parent-like figures. Finally, mothers’ concerns may be different from the concerns of their young adult children. Previous and ongoing related work has separately engaged youth to identify and prioritize their concerns and compare their concerns to those of mothers.27,30,31
Mothers identified multidimensional concerns about their adolescent daughters with a physical disability as they prepared for adulthood. Overall, mothers desired for their daughters to be healthy, happy, and empowered to strive for their life goals, but were concerned about how these goals were challenged by structural and societal barriers as well as their lived experience. Mothers identified adaptive coping strategies to address these concerns. Equipping mothers to know what to expect and how to adjust during their daughter's adolescence has promise for improving daughters’ long-term outcomes as they transitions to adulthood. As such, the parent-facing dimension of the intervention is intended to include testimonials of parents describing the concerns they experienced and adaptive strategies they found effective. Recommendations from neuropsychologists and other experts will add to the parents’ perspectives. The increasing concern about the transition to legal adulthood points to a need to better support families during this time. This includes social work support for navigating legal and insurance changes and policies that promote wellness as adults, such as improving inclusion in the workplace, guaranteeing continued insurance coverage for needed supplies and services, and providing free adult day programs.
Implications
Coaching mothers and female youth on adaptive coping is a promising modifiable factor that has been shown to improve functioning, quality of life, and health outcomes in youth with chronic health conditions.56–58 This study serves to identify common concerns of mothers as well as adaptive coping mechanisms to address those concerns. It will inform the development of the mother-centered component of a multi-level intervention to support female youth with physical disabilities and their families during the transition to adulthood. These findings may help inform schools, health care providers, and policymakers in better preparing and supporting mothers and families during this time. This, in turn, has promise for improving the long-term outcomes of female youth with physical disabilities. Finally, as the transition to adulthood is a concerning time for youth, the next step of the larger study is to prioritize and compare the concerns of youth and mothers during the transition to adulthood to further inform the multi-level intervention.59–62
Supplemental Material
sj-docx-1-prm-10.1177_18758894261448317 - Supplemental material for The concerns of mothers of female youth with physical disabilities in transitioning to adulthood: A qualitative study
Supplemental material, sj-docx-1-prm-10.1177_18758894261448317 for The concerns of mothers of female youth with physical disabilities in transitioning to adulthood: A qualitative study by Courtney S Streur, Jodi M Kreschmer, Peace Asumadu, Daniela A Wittmann and Claire Z Kalpakjian, John F P Bridges in Journal of Pediatric Rehabilitation Medicine
Footnotes
Acknowledgements
This work was supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development under Grant 1K23HD10598701A1 (Courtney Streur); and by the Burroughs Wellcome Fund under Grant Innovation in Regulatory Science Award (John Bridges). We would like to thank Betsy Hopson, PhD, and John Wiener, MD, for their assistance with recruitment.
Author contributions
All authors contributed to the study conception and design. Material preparation, data collection, and analysis were performed by Courtney Streur and Jodi Kreschmer with direction/oversight from John Bridges. The first draft of the manuscript was written by Courtney Streur, and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Burroughs Wellcome Fund, Eunice Kennedy Shriver National Institute of Child Health and Human Development, (grant number Grant Innovation in Regulatory Science Award, 1K23HD10598701A1).
Declaration of conflicting interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
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References
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