In the current qualitative research study, we focused on understanding the ecological systems, contexts, behaviors, and strategies of parents (N = 435) advocating for their children with an intellectual and developmental disability diagnosis, specifically Down syndrome (DS). Based on the data analysis, parents of children with DS advocate for their children frequently, in a variety of settings, with different actions, attitudes, motivations, and outcomes. The most common settings where advocacy occurred were primarily school and healthcare systems. The goals of parents often included inclusiveness, equality, and acceptance, whereas a few parents reported advocating due to discrimination and judgment. Implications for further research and professional practice also are described.
By its nature, advocacy is a broad concept that includes several definitions and strategies. Advocacy has been described as “the promotion of specific messages and/or course of action in order to influence or contribute to the development and implementation of public policies, which will alleviate negative consequences” (Watson, 2015, p. 10). It may also involve public education and influencing public opinion, implementing research to improve quality of life or to provide solutions to problems, lobbying and implementing necessary changes to improve policies and practices, and mobilizing individuals to take action to bring necessary social changes (Watson, 2015). Advocacy may include a range of behaviors or actions by individuals or groups that target a cause, idea, or policy; however, there is no agreement about which activities constitute advocacy (Reid, 2000).
Macro-level advocacy, such as influencing policy and lobbying for changes, plays a crucial role in promoting social equality. However, advocacy may also take place in micro-level environments, in which individuals and families advocate for improved quality of living for those with whom they have a direct relationship. Parents of children with intellectual and developmental disabilities (IDD) have described the importance of advocacy as a means for actively coping with the diagnosis (Ewles, Clifford, & Minnes, 2014), as well as improving support services for their child (Minnes & Steiner, 2009; Wang, Mannan, Poston, Turnbull, & Summers, 2004). Advocacy efforts have also been described as a source of empowerment for parents (Hess, Molina, & Kozleski, 2006), which may be especially important for parents of children with an IDD diagnosis who may encounter challenges with coordinating care with multiple professionals within numerous systems of care over the course of their child's life (Maes, Broekman, Dosen, & Nauts, 2003; Vohra, Madhavan, Sambamoorthi, & St Peter, 2014).
According to the National Down Syndrome Society (2017), advocacy involves actions that demonstrate support for an issue, often related to healthcare and health research, education, employment and economic independence, and integration into the community. Researchers have described the need for advocacy in specific settings, including education (Burke, 2015; Burke & Hodapp, 2014, 2016; Francis & Nagro, 2018; Francis et al., 2016; Hess et al., 2006; Rehm, Fisher, Fuentes-Afflick, & Chesla, 2013) and healthcare settings (Kuo et al., 2012; Minnes & Steiner, 2009; Prussing, Sobo, Walker, Dennis, & Kurtin, 2004). There is also literature available for professionals on specific IDD healthcare guidelines and recommendations for providing an initial IDD diagnosis (see American Academy of Pediatrics, 2013; Skotko, Capone, et al., 2009; Skotko, Kishnani, et al., 2009), as well as well as advice for parents on developing healthcare literacy and actively advocating for their child within the sometimes overwhelming and intimidating healthcare system (Summar, 2018).
Regardless of the methods or purpose, parental advocacy often includes acquiring specific knowledge, skills, and attitudes in order to be an effective advocate for their children, which is specific to each family and child within their broader social context (Trainor, 2010). Parental advocacy for children with an IDD diagnosis may occur at the individual, community, and societal levels (Gross, 2004), in which advocacy focuses on making changes within each of these areas. For this reason, the current research was guided by Bronfenbrenner's (1979; Bronfenbrenner & Morris, 1998, 2006) Ecological Systems Theory of Development, in which contexts and behaviors can be identified by the system levels (i.e., microsystem, mesosystem, exosystem, macrosystem, chronosystem), which may increase our understanding of how social context plays a direct role in the personal life and decision-making process that individuals and families experience. Additionally, this model specifically describes the interactions between system levels, allowing for an understanding of relationships between system contexts. The model helps to identify the role of advocacy in assisting parents of children with IDD cope with challenges and construct meaning within the various contexts or social systems with which they interact (Nelson Goff et al., 2017).
Although parental advocacy has been described in a variety of contexts such as schools, therapy, medical settings, at the governmental level, and in public settings (Lack, 2002; Prussing et al., 2004), few studies specifically examine parental reports of their own advocacy strategies and behaviors, and no known studies exist that are specific to advocacy behaviors in parents of children with Down syndrome (DS). Although some researchers have found that parents of children with DS report lower stress levels and better coping skills than parents of children with other disabilities (Eisenhower, Baker, & Blacher, 2005; Fidler, Hodapp, & Dykens, 2000; Smith, Romski, Sevcik, Adamson, & Barker, 2014), others have found that certain variables, such as income, maternal age, and child's behaviors may explain these differences (Corrice & Glidden, 2009; Stoneman, 2007). Additionally, parents of children with DS have reported higher stress levels than families of typically developing children (Hodapp, Ly, Fidler, & Ricci, 2001; Sanders & Morgan, 1997), suggesting that comparisons to these families may not fully explain the experiences of families with a child with DS. Other researchers have targeted parental advocacy during specific transition periods, such as the transition into (Siddiqua & Janus, 2017) and out of (Rossetti, Lehr, Pelerin, Huang, & Lederer, 2016) the educational system for individuals with an IDD diagnosis, or with specific age groups, particularly younger children (Boshoff, Gibbs, Phillips, Wiles, & Porter, 2016; Conley Wright & Taylor, 2014; Siddiqua & Janus, 2017). Other research has included small samples of parents (e.g., Boshoff et al., 2016; Conley Wright & Taylor, 2014; Minnes & Steiner, 2009; Neely-Barnes, Graff, Roberts, Hall, & Hankins, 2010; Rehm et al., 2013; Rossetti et al., 2016; Siddiqua & Janus, 2017). Thus, because of these limitations and the fact that researchers have pointed out potential differences between families with various IDD diagnoses in a child, the current study sought to identify levels of parental advocacy in a large, national sample of parents of children with DS across the lifespan and across different social system contexts (Bronfenbrenner, 1979; Bronfenbrenner & Morris, 1998, 2006). The research questions for the current study were:
What specific situations or experiences are reported by parents of children with DS specifically related to:
How often parents advocate?
Where parents advocate (specifically the social ecological system levels)?
How parents advocate?
Why parents advocate?
What outcomes result from parental advocacy?
What observations can be made related to gender differences in parent advocacy?
These research questions sought to help us further understand the phenomenon of parental advocacy, as well as to identify which behaviors and strategies parents use to promote the well-being of their child.
The purpose of this study was to gain information regarding parents' advocacy behaviors and strategies they used for their child with DS. Participants were recruited via both regional and national DS groups identified through Internet searches and Down syndrome-specific national organizations and personal contacts of the faculty principal investigator. Study participants were recruited via both regional and national DS groups including the National Down Syndrome Congress (NDSC; ndsccenter.org), the Down Syndrome Guild of Greater Kansas City (kcdsg.org), Band of Angels (bandofangels.com), and the Council for Exceptional Children (cec.sped.org). In order to recruit participants, the NDSC sent recruitment information to affiliate groups, which then distributed the information to their local listservs. Potential participants from across the United States were contacted with information about the study as well as a link to participate in the web-based survey. All study procedures were approved by the Kansas State University and Texas Tech University Institutional Review Boards.
As part of a nationally distributed study examining the experiences of parents raising a child with DS, 651 parents completed the web-based survey comprised of both quantitative measures and open-ended questions. Of the original 651 participants, only 435 participants completed the open-ended qualitative question addressed in the current study. No significant differences were found between the participants who completed and those who did not complete the qualitative responses on any demographic indicators. Participants responded to one open-ended question, which was the focus of the current study: Describe a time when you have been an advocate for your child. The final sample size for the current analysis was N = 435 parents. Most participants were female (83%), White (86.7%), currently married or remarried (85%), and from a high socioeconomic status (63.7% of parents in the sample reported an annual household income of ≥$70,000). Many parents were employed full-time (46.7%) and had completed a college degree or higher (61.8%). Participant age ranged from 19 to 87 years (M = 41.8, SD = 9.6), with the age of the children with DS ranging from <1-55 years (M = 9.43, SD = 9.1). (See Table 1 for additional demographic data.)
Data Analysis Plan
In order to analyze the parents' responses, grounded theory analysis and thematic coding (Corbin & Strauss, 2015) were used. The research team consisted of one graduate research assistant and four undergraduate research assistants who independently engaged in open coding of parent responses (see Holton, 2007). A qualitative comparative analysis was used to conduct the qualitative data analysis (Patton, 2002). After the research assistants coded all participant responses individually, the team met together and participated in consensus coding. During consensus coding, ideas, reasoning, reactions, and perceptions were shared, and discrepancies were discussed across all coders. Qualitative data analysis and reporting were conducted using multiple coders and team consensus. The use of this type of investigator triangulation (Patton, 2002) strengthened the verification and validity of the content analysis by minimizing the potential for bias that can arise from a single analyst. The individual team members independently conducted content analysis of the qualitative data records and identified patterns within the data, using the qualitative data management software NVivo 11 (QSR International, 2014). The research team met two to three times per month to review their identified codes and develop a consensus regarding the coding of the data. The research team compiled a codebook and reviewed the data and codes to reach a consensus. Once team consensus was reached regarding the data record codes, the group organized the data according to the identified categories to assess for their substantive significance (Patton, 2002). To conclude the analysis, the research team identified the strongest of the categories, based on breadth and depth, and identified participant quotes that particularly captured the essence of each category to serve as exemplars (Patton, 2002). Thus, substantive significance, the method by which qualitative findings are evaluated for scientific merit, similar to that of statistical significance for quantitative data (Patton, 2002), was determined through the use of several methods of triangulation (e.g., multiple coders and team consensus), constant comparison analysis, repeated reviewing of the data, and cross-comparisons of the consensual code validation by all team members (Patton, 2002). Originally 70 codes were identified in the data. After further examination and consensus coding, similar codes were combined into a common theme (see Table 2) in order to gain a greater understanding of the parents' responses. Once the research team met consensus on all codes after multiple data analysis sessions, the codes were categorized into similar theme groups, which are further described in the next section.
Advocacy may be important for parents of children with an IDD diagnosis, such as Down syndrome, who come across many challenges due to their child having unique experiences and needs. Results from this study indicated that both mothers and fathers engage in advocacy behaviors across different settings, behaviors, and functions of advocacy. To address Research Question 1, the following qualitative data themes were identified: frequency of advocacy (how often parents advocate), advocacy settings (where parents advocate), advocacy behaviors of parents (how parents advocate), the purpose of advocacy (why parents advocate), and results and outcomes from parental advocacy. The identified themes addressed different aspects of advocacy and are described next, with exemplar quotes from participants. Although fewer fathers participated in the study than mothers (see Table 1), we have included data based on gender differences to address Research Question 2, where relevant.
Frequency of Advocacy: How Often Parents Advocate
Several parents (n = 143) stated that they advocate “everyday” for their children in a variety of settings. Only a few parents (n = 28) stated they are ready to advocate “whenever needed,” whereas others (n =17) stated they have not needed to advocate yet for their children due to their child's age or their own satisfaction with providers and services. Results indicated that parents of children with DS frequently advocate for their children across a variety of settings, but most commonly in schools or with healthcare services. As a 42-year-old mother expressed: “I'm an advocate for my daughter every day and every waking hour of my life.”
Advocacy Settings: Where Parents Advocate
Results indicated that parents of children with DS engage in advocacy behaviors across many contexts ranging from personal to public settings. The most common setting in which parents reported advocating for their child was in educational or school settings (n = 187). A higher percentage of mothers described being advocates in the school setting (45%) compared to fathers (30%). Parents specifically described advocating with their child's individualized education program (IEP) process (n = 47) and early intervention program (n = 33). Other parents described advocacy in their child's healthcare (n = 90) and clinical therapy services (n = 52). Only a few parents (n = 20) reported engaging in advocacy in religious settings. One mother shared her role in the services her son receives: “Just meeting with Early Intervention you have to be an advocate. The service coordinator can suggest services, but only I know which are best and what he really needs.” A 55-year-old father shared a sentiment that summarized the extent of their role as advocate that many parents feel: “We have been advocates for her from the beginning with medical care and will continue to be until our end.”
Advocacy Behaviors: How Parents Advocate
Data analysis further revealed how parents experience advocacy within certain contexts and settings through specific advocacy behaviors. Parents reported advocating for their children through their child's activities, such as setting high expectations, spreading awareness, promoting less use of the R-word (see www.r-word.org), educating others, or coordinating providers. As with the settings for their advocacy, parents have engaged in advocacy behaviors in a variety of ways. Some differences were found comparing mothers and fathers in their advocacy behaviors. A higher percentage of mothers described being assertive with professionals (23%) compared to fathers (8%). More fathers reported engaging in fundraising as an advocacy activity (8% compared to only 2% of mothers), as well as efforts to change policies (10% of fathers compared to 3% of mothers).
The most prevalent response indicated that parents (n = 93) have primarily advocated for their children by educating others about DS, including family members, friends, co-workers, and professionals. Similarly, several parents (n = 92) described advocating by being assertive with professionals providing various services for their child. Being persistent also was specifically described by parents (n = 60) in their reports of their advocacy behaviors with professionals. Thus, although parents reported educating others about DS, they also specifically described situations when they had to take their efforts to another level by being assertive and persistent to ensure their child's needs and rights were being met. One 45-year-old mother described her advocacy experience of being assertive and persistent with her son's school professionals:
When we moved to a new [neighborhood], the school kept insisting that our street hadn't been cleared by the city and that we had to meet the bus for him 1/4 mile away, necessitating a van ride in the frigid dark mornings only to wait up to 1/2 hour for his bus. When my van engine blew…I called the director of Special Education and explained the situation. I calmly informed her that if the bus wouldn't come to our house to pick him up, they could send a teacher, physical therapist, speech therapist, and occupational therapist to our home. And that I would be checking into an attorney as advised by my parental advocacy group. The director and school district attorney were in my dining room with me signing papers the next morning. The bus service at our doorstep started the following day.
Additionally, parents (n = 50) stated they advocated for their children by focusing on the individual needs of their children, whereas others (n = 36) stated they advocated for their children by setting high expectations for their children and the professionals involved in their care. Other parents (n = 36) stated they advocated for their children by coordinating the services they received from providers or by working directly to secure specific providers to work with their children.
Our results gathered that parents advocated for their children in contexts mostly by educating others and being assertive and persistent with professionals, when necessary. Some parents described their advocacy behaviors in setting high expectations and coordinating care for their children. Often, these advocacy behaviors are tied to a specific goal and purpose for advocating, which will be described next.
The Purpose of Advocacy: Why Parents Advocate
Through advocacy, parents are searching for certain desired outcomes, including mainstreaming and inclusion, acceptance, happiness and well-being for their child, and equality and equal opportunities—the basic human rights to which all people are entitled. Some parents described advocacy as a result of discrimination or judgment. Other participants (n = 80) indicated that they are seeking mainstreaming and inclusion of their child through their advocacy efforts. Additionally, parents (n = 67) indicated that they are seeking inclusion through advocacy, particularly within the school context. For example, a 36-year-old mother stated: “Every day making sure she is treated like the other kids and given all the same opportunities. Making sure her teachers don't cut her slack in the classroom because of her diagnosis.” Some participants (n = 63) indicated that they are searching for equality through advocacy in order to be treated like their typically developing peers and to receive the services needed to reach their full potential.
Another mother explained how she advocates for her child with DS with the goal of achieving equality:
Every day in every way…encouraging his teachers to let him try, promoting his abilities to do as other kids are doing. Taking him to several therapies every week and planning his goals in therapy. From that first hug in the morning which shows his siblings that he is just as important to us as they are to the afternoon timeout which shows he is just like any other kid and needs to follow rules.
Other parents reported advocating for their children to promote their abilities as well as to ensure their children also receive rules and consequences, which again, are part of their peers' experiences and expectations. Parents (n = 39) also advocated as a response to directly experiencing discrimination or judgment from others. Finally, a few parents (n = 23) reported that they are seeking acceptance of their child through advocacy, as one 39-year-old mother shared:
I feel like I am an advocate for him every day that we step out of the house together. I am always open and willing to discuss the joys and challenges of Down syndrome with anyone. I never want anyone (family, friends, or strangers) to be afraid to ask questions or address it. There is so much positive information to share, and most people just aren't aware! He is an absolute joy, and he's a busy boy – I try to help people see that about him. …“He's just a boy!”
In the current theme, although some parents described advocacy due to specific experiences of discrimination or judgment from others, the goals of parental advocacy primarily involved gaining inclusion, acceptance, and equality for their children with DS. Parents advocate to improve the circumstances faced by their children with DS. The motivation behind their advocacy is tied to the specific outcomes they hope to achieve from their efforts.
Results and Outcomes From Parental Advocacy
Participants described the results of their advocacy efforts including their successes, as well as personal changes and other benefits. Several parents (n = 61) indicated that their advocacy efforts were successful, whereas very few parents (n = 3) indicated that they were not successful. Some of the previous parent quotes indicate the success of their advocacy efforts, particularly with schools and healthcare services. Parents (n = 43) also indicated personal changes as well as mutual benefits, such as self-reflection and gaining information and knowledge, as a result of their advocacy behaviors. A 44-year-old mother described how she was changed by advocacy through her learning:
I am constantly watching out for her, talking to people, searching the internet for the best therapy protocols, the best therapy tools, the latest research on vitamins, options for when she ages out of the early intervention program. I feel I am constantly preparing for what lies ahead. To me, knowledge is power and the more knowledge I have, the better I can help her get what she may need in the future. …I want to be able to advocate for her whatever her needs may be in the future.
Results from the current study indicated that most parents believed they were successful in their advocacy efforts. Their efforts not only benefitted their child, but also the parents and possibly others as well, as parents described positive outcomes resulting from their advocacy.
In the current study, we found that parents of children with DS advocate for their children frequently in a variety of settings, and with different actions, attitudes, motivations, and outcomes. Similar to other research (Conley Wright & Taylor, 2014), the most common settings where parental advocacy occurred were in school and healthcare settings, particularly therapy services, IEP meetings, and early intervention programs. Many parents reported being persistent and assertive with professionals, coordinating services focusing on the personal needs of their child, and setting high expectations for their child, as has been described in other research (Rossetti et al., 2016). Their goals often included inclusiveness, equality, and acceptance, whereas a few parents reported advocating due to discrimination and judgment. As with other research (Boshoff et al., 2016; Rehm et al., 2013), our study also found that parents reported being successful in their advocacy and gaining personal benefits from their advocacy efforts.
Our participants described the importance of inclusiveness, mainstreaming, and acceptance, similar to other research (King et al., 2006). Parents in the current study also reported ensuring that their child receive quality care and services and even used similar terms, such as persistent and pushy, that have been described by other researchers as well (Boshoff et al., 2016; Conley Wright & Taylor, 2014; Minnes & Steiner, 2009; Neely-Barnes et al., 2010; Rossetti et al., 2016). Although educational and healthcare settings were the most reported settings where parental advocacy occurred, over twice as many parents in the current study reported school-related advocacy (n = 187) than healthcare (n = 90). As Trainor (2010) stated, parents of children with disabilities and other special needs often find it necessary to become directly involved in the school experiences of their children.
The current study also indicates the importance of inclusion and equality in broader society—gaining full inclusion for their children (Gallus & Jones, 2018; Lack, 2002). Yet, stereotypes and discrimination remain obstacles to raising awareness and to breaking down the barriers to fully meeting the needs and recognizing the abilities of individuals with IDD (Farkas et al., 2018; Neely-Barnes et al., 2010). In addition, although parents in the Conley Wright and Taylor (2014) study described advocacy in macrosystem settings, the advocacy behaviors and strategies described by parents in the current study were primarily in the microsystem and mesosystem levels (e.g., family, friends, schools; Bronfenbrenner, 1979; Bronfenbrenner & Morris, 1998, 2006), compared to the macrosystem level or social structure. Parents in the current study may have described directly advocating at the upper ecosystem levels, but these were not the most salient themes that emerged from the research analysis. Although their advocacy efforts certainly may have had a broader social impact, their reasons for advocating were primarily to improve their child's life—to have a more immediate impact on the day-to-day experiences of their child. Thus, even though some parents reported wanting to gain acceptance for their child or other individuals with DS/IDD, they reported very specific instances of seeking mainstreaming and inclusion because of other people's discrimination or judgment toward their child, rather than pursuing a broader, more general social impact. Their purpose was also more related to personal changes than seeking social, structural, or policy changes at community or societal levels (Gross, 2004; Nespor & Hicks, 2010). Every parent may advocate differently; however, these efforts are often working toward a common goal—to get the services and resources their child needs. Regardless of their parental advocacy styles or specific strategies used, advocating was seen by parents in the current study as a way to improve their child's life and fight for inclusion (Minnes & Steiner, 2009; Neely-Barnes et al., 2010).
In the current study, we were curious if there were any differences between mothers compared to fathers; however, only a few differences were found between mothers and fathers in their advocacy efforts. A higher percentage of mothers reported being advocates in the school setting, wheras more fathers described engaging in advocacy efforts through fundraising or efforts geared toward policy change. This may be somewhat explained by the fact that, traditionally, mothers have been seen as primary caregivers for children, and especially when the child has a special needs diagnosis (Marcenko & Myers, 1991; Traustadottir, 1991; see Cless & Stephenson, 2018, for a review of current literature focused on mothers of children with IDD). Although the current study included only a few fathers, the data provides an initial description of the possible gender differences in advocacy behaviors of parents and gender differences should be explored further in future research. Another area to explore further is parents' perceptions of their advocacy efforts being successful compared to those who did not. Because the number of parents who indicated being unsuccessful in the current study was so small (n = 3), it is not possible to extrapolate on possible factors or variables that may have contributed to these parents' experiences.
Limitations and Implications of the Current Study
Advocacy is an important responsibility for many parents, which also may occur more or less at different developmental stages. It is not known whether differences in parental advocacy occur across different education or socioeconomic status of parents, or whether certain training or advocacy programs are helpful for parents of children with DS or other IDD diagnoses. It may be helpful for parents to share their advocacy experiences and advice for successful advocacy with other parents (Nespor & Hicks, 2010), or for IDD advocacy groups to provide training for new parents specifically related to methods for engaging in successful advocacy (Burke, Goldman, Hart, & Hodapp, 2016).
It is important to help professionals recognize the issues parents of children with DS and other IDD diagnoses face and to prevent situations when there could be a breakdown in the parent-professional relationship before it occurs (see Nespor & Hicks, 2010; also see Rehm et al., 2013). Developing a collaborative working relationship and identifying points where conflict may occur is important in planning services and engaging families in the care of their child. Collaborative teams that are mutually working and advocating for the unique needs of the child in a variety of settings may help to reduce potential points of conflict and improve services.
It is also important to recognize when advocacy occurs at higher ecosystem levels (Bronfenbrenner, 1979; Bronfenbrenner & Morris, 1998, 2006), because most parental advocacy reported in the current study occurred in the microsystem and mesosystem levels, where there were more immediate causes and observable effects. There are certainly examples of parents being involved in successful policy and government advocacy, but it was not clear from the current study when parents advance to those higher ecosystem levels in their advocacy.
Although it was beyond the scope of the current study, the Rehm et al. (2013) study described parent advocacy styles in the education setting. It is important to pursue this issue further to identify whether those same parent styles occur in different settings (e.g., healthcare or therapy services) and which parent advocacy behaviors and strategies are most effective in which settings. Not all advocacy involvement occurred at a point of difficulty or challenge in caring for their child, but often revolved around a significant point of contention within a larger system or with a specific professional, similar to other studies (Conley Wright & Taylor, 2014; Nespor & Hicks, 2010; Rehm et al., 2013). It is possible that previous attempts to educate and inform professionals either did not occur in those situations or were unsuccessful which resulted in parents becoming more assertive with professionals or perceiving that their advocacy efforts were not successful, as was the case for a few parents,. What is clear from the current results is that parents actively engage in advocacy to benefit their children and others with IDD and other special needs (Boshoff et al., 2016; Conley Wright & Taylor, 2014), but further research is needed to explore what specific factors contribute to parents engaging in higher ecosystem advocacy and what contributes to successful—and unsuccessful—advocacy.
The current study included a large national sample of parents, however there are a number of limitations that need to be addressed in future research. Although we attempted to include a range of demographic variables and specifically recruited ethnically diverse parents through ethnicity-based parent groups at the annual National Down Syndrome Congress conference, our total sample was predominately White, married females who reported a high socioeconomic status. This is also the primary population in other IDD research and has been identified as a specific barrier to parental advocacy (Boshoff et al., 2016). Thus, while the size and national sample of our study participants was a strength, particularly for a qualitative research study, the lack of diversity is a limitation, despite targeted group recruitment to improve diversity in our sample. In addition, the question analyzed in the current study asked parents to reflect on previous advocacy experiences, so current advocacy efforts were not specifically assessed and participants may have had other advocacy-related experiences that were not included because of online survey limitations. Although our sample included parents of children from a broad age range (<1-55 years old), which we believe was also a strength of the current study, it was beyond our current analysis to distinguish differences reported across various age groups, both parent age groups and child age groups, as well as differences across parent experience levels (i.e., new parents compared to parents who have had a longer history and variety of opportunities in which to advocate for their child). Finally, we did not assess satisfaction with the outcomes or effectiveness of their advocacy efforts, as has been done in other studies (Siddiqua & Janus, 2017). It may be helpful to develop specific advocacy strategies and formal training for parents and professionals (Burke et al., 2016), because it appears from the current study that most parents are facing situations in which they must engage in advocacy without formal preparation or training. In addition, becoming an advocate appears to be a common role for many parents (Boshoff et al., 2016) and, according to some parents, it occurs “every day in every way” across the lifespan.
The current study provided a direct look into the advocacy behaviors and strategies of parents of children with DS across a variety of contexts. Parents engage in both direct and indirect advocacy behaviors through educating others, setting high expectations, and coordinating services and providers in order to bring inclusion, equality, and acceptance for their children now and in the future. The results from this study may impact individuals with IDD, their families, professionals across a variety of areas, and policy makers, by providing information on effective advocacy behaviors and strategies as they seek to improve the lives of individuals with DS and other IDD diagnoses.
This research was presented as a poster presentation at the National Council on Family Relations Annual Meeting, Orlando, Florida, November 2017.
Denotes equal contribution as second author: Kristen Krueger, Meghan Dyster1, Mollie Reves1, Robert Steele1, Briana S. Nelson Goff1, and Jessica D. Cless1.