Parent Perceptions of Care Received by Children With an Autism Spectrum Disorder

Journal of Pediatric Nursing (2016) 31, 21–31

Parent Perceptions of Care Received by Children With an Autism Spectrum Disorder1,2,3 Sarah Russell DNP, APRN, FNP-C ⁎, Cynthia Ricci McCloskey DNS, APRN, WHNP St. John Fisher College, School of Nursing, Rochester, NY Received 2 May 2015; revised 2 November 2015; accepted 2 November 2015

Key words: Parent; Perceptions; Autism spectrum disorder; ASD; Children

Research in the post-genomic era has provided substantial contributions toward identification of medical, genetic and environmental heritability factors associated with autism spectrum disorder (ASD). A specific etiology related to the diagnosis remains unclear, although prevalence statistics continue to rise with profound impact on families and their primary care providers (PCPs). Support professionals encounter significant challenges delivering comprehensive management for this complex neurobehavioral and developmental disorder. Children with ASD experience significantly higher risk for unmet healthcare needs, and parents report less satisfaction with their care although current literature does not fully explain why this issue persists. This study sought parent insight for the missing answers needed to inform practice. Eleven parents of children with an ASD participated in the study. Parent perceptions of care were examined utilizing Interpretive Phenomenological Analysis (IPA) and the Measure of Process of Care (MPOC-20) to illuminate and describe their lived experiences raising children with ASD, and interactions with their PCPs. Most parents utilized their child's PCP for general health maintenance, and many felt their PCP was unable to manage issues specifically related to their child's ASD. Most did not have an expectation for support with behavioral management in the home and school setting or identification of community and mental health resources, although many struggled with unaddressed needs in both of these realms. Utilizing parent perceptions to highlight practice deficiencies can build a foundation for care models that are more comprehensive and family centered. © 2016 Elsevier Inc. All rights reserved.

Background AUTISM SPECTRUM DISORDER (ASD) is a neurodevelopmental and behavioral disorder expressed through 1

impaired social communication, interactions, and restricted, repetitive, patterns of behavior, activities and interests (American Psychiatric Association, 2013). ASD is a perplexing disorder,

Purpose: The purpose of this study was to examine parent perceptions of care received by children with autism spectrum disorder though their primary care provider, illuminate their lived experiences, identify deficiencies and recognize strengths in care, highlight family centered goals and what they find most meaningful in the care provided for their children, to inform practice, and promote implementation of current guidelines for children with ASD in primary care. 2 Design and Methods: This mixed method study included 11 parents who self reported they were primary caregivers for a child (or children) with ASD. Interpretive Phenomenological Analysis (IPA) was utilized for qualitative analysis to understand parents lived experiences raising a child with ASD. The Measure of Processes of Care (MPOC-20) was employed to further describe and underscore parents' spoken words. The MPOC-20 is a parent self-report tool that measures parent perceptions of the family centeredness of their child's care. 3 Practice Implications: Children with ASD often experience many unmet health care needs, potentially affecting their developmental progress, ultimate functionality and the well-being of their family. Understanding parent perceptions and examining their lived experiences provides great insight into the unique challenges they encounter. Lessons learned from this study include promotion of more family centered care models that are individualized, comprehensive and utilize current practice recommendations. Care coordination is foundational to the profession of nursing. Advanced practice registered nurses (APRNs) are well suited to provide holistic management of the complex social, behavioral and medical needs this rapidly increasing population of children and their families require. ⁎ Corresponding author: Dr. Sarah Russell, DNP, APRN, FNP-C. E-mail addresses: [email protected], [email protected]. http://dx.doi.org/10.1016/j.pedn.2015.11.002 0882-5963/© 2016 Elsevier Inc. All rights reserved.

22 which can exert wide ranging neurological and systemic functions with rather similar behavioral and biological manifestations (Hu, 2013). The term “spectrum” describes how symptoms can range from mild to severe with broad variations in individual presentation and level of functioning. Medical (Chen et al., 2013; Matson & Goldin, 2013), neurological, and psychiatric morbidity commonly co-occur in this population of children, potentially exacerbating primary ASD features (Bauman, 2010) and adding to their need for health care service utilization (Tregango & Cheak-Zamorah, 2012). Treatment goals focus on diminishing core features and related deficits, maximizing independence, and enhancing quality of life for the child and their family (AAP, 2007). The post genomic era has contributed significant research through exploration of genetic heritability and complex environmental factors believed to influence its development (Veenstra-VanderWeele & Blakely, 2012). Despite this important work a single causative element has yet to be conclusively identified. As surveillance and diagnostic processes have developed in sophistication, greater numbers of children are being identified. ASD is now estimated to affect 1 in 68 children living in the United States, representative of a 123% increase from prevalence statistics first reported in 2002 (CDC, 2014). Presently with no known cause or cure, this complex and enigmatic developmental disorder poses significant challenges surrounding care and management for families and their primary care providers (PCPs). The Maternal and Child Health Bureau (MCHB), and the American Academy of Pediatrics (AAP) similarly define children with special health care needs (CSHCN) as “those who have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions and who require health and related services of a type or amount beyond that required by children generally”. Children with ASD are a growing number of CSHCN as nearly all experience ongoing medical and behavioral conditions significantly adding to their need for health and related services. Children with ASD “generally experience a greater burden of illness” and “number of functional difficulties and comorbid conditions” than other CSHCN, and those without (U.S. Department of Health and Human Services Health Resources and Services Administration & Maternal and Child Health Bureau, 2013). A joint policy statement released by the American Academy of Pediatrics, the Council on Children with Disabilities and the Medical Home Implementation Project Advisory Committee endorses patient and family centered care through a child's medical home to increase efficiency, lower cost and provide more comprehensive care management (AAP, 2014). Children with ASD who receive care through this model experience fewer health related deficiencies and better access to specialty services (Farmer et al., 2014). It has also been demonstrated that individualized medical home management of children with ASD increased parent satisfaction with care, promoted family involvement, well-being and decreased unmet needs (Golnik, Scal, Wey, & Gaillard, 2012).

S. Russell, C.R. McCloskey Despite endorsement as “ideal” the patient and family centered medical home concept has been difficult to implement for children with ASD whose therapies span multiple providers, agencies and disciplines (Williams et al., 2012). CDC statistics report less than half of children with ASD receive care through a medical home, and are less likely to receive comprehensive management through this model than children with other special health care needs and those without (Child and Adolescent Health Measurement Initiative, 2012). It has been well documented that this population of children faces a significantly higher risk for unmet specialty care needs as PCPs are challenged with attending to treatment options, providing parents support with challenging behaviors, and locating appropriate community resources (Chiri & Warfield, 2012). PCPs cite a lack of time, reimbursement, knowledge and expertise in behavioral management as barriers to medical home provision for their patients with ASD (Carbone, Behl, Azor, & Murphey, 2010). Parents raising children with ASD report feeling “isolated, frustrated and fatigued” (Carbone et al., 2010) with the burden of coordinating their child's complex needs by themselves. These parents report less satisfaction with their child's school, community, and health services (Montes, Halterman, & Magyar, 2009), and are less likely to describe care they receive from their PCP as family centered (Guillermo & Halterman, 2011). Difficulties managing challenging behaviors, impaired social communications, and comorbid physical symptoms can place significant burdens on the family (Silva & Schalock, 2012). Considerable worry, financial hardship, difficulty locating specialty programs, and dissatisfaction with service provision are described as well (Hall & Graff, 2010). Parents raising children with ASD report significantly more stress, and lower levels of personal and marital well-being than parents raising children with other developmental disorders, and those without (Harper, Dyches, Harper, Roper, & South, 2013). Despite an abundance of studies identifying the unmet health care needs of children with ASD, there is a paucity of literature exploring why these deficiencies persist (Chiri & Warfield, 2012). This evidence gap must be further explored to propose solutions for these unaddressed health disparities impacting functioning and well-being of this high-risk population and their caregivers. Providing comprehensive management to children with ASD requires greater understanding for the lived experience of the parents who are raising them, and the challenges they encounter first hand. This study seeks their valuable insight to identify the missing answers needed to inform practice and address care deficiencies.

Sample Prior to commencement of the research, details of the proposed study were submitted and approved by the Institutional Review Board (IRB) at St. John Fisher College. A purposeful and snowball sampling technique was utilized for recruitment of parent participants interested in discussing their personal feelings and experiences raising a child with an

Parent Perceptions of Care for an Autism Spectrum Disorder ASD, and the care they have received. Recruitment flyers were placed in waiting rooms of local primary care offices and passed to parents attending autism specific programs for their child. Parents were welcomed to share flyers with acquaintances if desired. Eleven parents answered the flyer and volunteered to participate in the study (n = 11). All of the respondents were mothers, and self-reported they were primary caregivers of a child (or children) with ASD. Three of the parents had more than one child with an ASD, representative of the 2–3 fold increased risk for ASD recurrence among siblings in previously identified families (Ozonoff et al., 2011). No medical information was obtained for inclusion in the study; ASD diagnosis was verified through parent report alone. Parent ages ranged from 39 to 56 years with a mean of 45 years. Ages of their children with ASD ranged from 4 to 17 years with a mean of 13.3 years. Twelve of the children were male (75%) and 4 were female (25%). As reported by their parents, 5 (31.2%) of the children were diagnosed with pervasive developmental disorder-not otherwise specified (PDD-NOS), 8 (50%) with autistic disorder, and 3 with asperger's disorder (18.8%). Average time elapsed from each child's initial diagnosis to present was 5.4 years with a range from 1 to 13 years. It is significant to note that the national average of age at ASD diagnosis is 4 years, although the CDC (2014) reports that a reliable diagnosis can be made as early as 18–24 months. The families in this study on average received an ASD diagnosis when their child was 8 years of age, or two times the national average. Location of residence can be inferred as a factor here, as 9 out of the 11 families lived in rural Health Resources and Service Administration designated health professional shortage areas. All of the parents interviewed were female and white, reflecting the homogeneity of the largely suburban and rural upstate NY location where the study was conducted.

Measures The study utilized a mixed methods design to investigate the lived experience of parents raising a child with ASD, and describe perceptions of the care they have received. Development of the interview schedule, protocol, and qualitative analysis utilized the process of Interpretive Phenomenological Analysis (IPA). IPA seeks understanding of an experience “within a particular phenomena” (Bryman, 1988), ideal for examining the selected population of interest, parents raising children with ASD. Applications of this method for health research often focus on how individuals perceive their specific condition in great detail. Deeper insight from those experiencing the studied topic can afford great opportunities to inform clinical practice through their shared understanding with the investigator (Boyle, 1991). This method openly recognizes the importance of researcher insight in the analysis process, supporting an emic viewpoint in dynamic relationship with the participants (Smith, Flowers, & Larkin, 2009).

23 Quantitative data collection focused on responses from the MPOC-20. This well validated and reliable tool (Cunningham & Rosenbaum, 2014) was designed for parents to evaluate their perceptions of “family centered attributes and behaviors” regarding the services and providers caring for their child with a physical or developmental disability (McMAster University, 2014). The MPOC-20 contains five scales with themes that include; enabling and partnership, providing general information, providing specific information about the child, coordinated and comprehensive care for the child and family, and respectful supportive care (McMAster University, 2014). The MPOC was written at an eighth grade comprehension level of English, can be self administered for confidentiality, and generally takes 15– 20 minutes to complete. Parents are asked to answer 20 questions with a rating scale of 1–7, with 7 equaling “to a great extent” and 1 equaling “not at all.” A mean score for each of the five scale groups was calculated. Demographic and MPOC-20 data were organized and calculated with Excel 2011. ATLAS.ti (1.0.16) was utilized for coding and theme development.

Procedure Initial consent was obtained when parents contacted the researcher, agreed to participate in the study, and showed up for their interviews. Participants determined a date, time, and location to meet individually, per their own preference. Formal written implied consent was obtained at the start of every meeting. Participants were given a copy of the interview schedule (Table 1), and the Measures of Process of Care (MPOC-20). Ten out of the 11 parents completed MPOC-20 tool. Each chose to complete it at the interview, or mail their responses back in pre-addressed and stamped envelopes. Semi-structured, tape-recorded interviews were completed individually over one meeting. Length was structured around the participant's desire to further expound or develop upon the interview schedule, and express their personal thoughts and experiences. Interviews with eleven parent participants were completed until empirical confidence of data saturation was achieved. A field log was used to record Table 1

Interview schedule

I. Can you tell me what it has been like parenting a child with an autism spectrum disorder? II. Can you tell me about your child's primary care? III. What challenges or needs do you experience related to your child's autism diagnosis? IV. What is most important to you regarding the care provided to your child and family? V. What goals would you like to identify for your child regarding their medical care? VI. Can you describe family centered care, and what this means to you? How can your child's primary care provider support this?

24

S. Russell, C.R. McCloskey

notes and observations made during these times as well. Verbatim transcripts were produced from the audio recordings through a professional transcription service resulting in over 400 minutes of recordings, and 275 pages of transcribed dialogue. Parent participants were assigned an alphanumeric identifying code, and recognizing information was made anonymous to maintain confidentiality. At the end of the interview participants were offered a $20 gift card to thank them for their time.

Analytic Strategy Field notes were reviewed, recordings were listened to multiple times, and transcripts reread to support data immersion and intimate participant understanding. The first interview was studied extensively, reread, and coded. Initial themes and their relationships were identified. Themes were further analyzed for meaning, clustered, and put in a table with supporting text to substantiate transparency of data analysis (Elliott, Fischer, & Rennie, 1999). This process was repeated for each interview to ensure a full range of relevant and salient themes for compilation of a master list (Reid, Flowers, & Larkin, 2005). Recurrence of emergent themes in thick and rich participant descriptions asserted validity of findings (Creswell & Miller, 2000). Final themes were compared for accuracy. Final analysis was written adhering to IPA methodology as described by Smith et al. (2009). Descriptive statistics summarizing parent responses from the MPOC-20 were triangulated with qualitative data to understate and further describe parents' spoken words. ATLAS.ti (1.0.16) was utilized for coding and theme development. Demographic and MPOC-20 data were organized and calculated with Excel 2011.

Results

MPOC-20 subscales (Table 2) describing “Respective and supportive care” received the highest mean scores of 5.3, a behavior parents perceived “to a fairly great extent” (SD of .2). Parents rated their providers ability of “Providing general information” about their child lowest with a mean score of 3.2 (SD of .54), occurring only “to a small extent.” Analysis of qualitative data revealed five master themes identified as follows; Overwhelming Emotion, The Medical Home is Only Medical, On Our Own,

Table 2

MPOC-20 subscales

Scale name

Number of M items

SD

Respectful and supportive care Providing specific information about the child Coordinated and comprehensive care Enabling and partnership Providing general information

5 3

5.3 .2 4.83 .97

4 3 5

4.7 .39 4.46 .18 3.2 .54

School Related Stress and Future Goals. Four subordinate themes titled; What is Family Centered care?, Guilt, Lost Connections, and Unspoken Words were identified. Themes centered primarily on the lived experiences of parents raising a child with an ASD, and perceptions of the care they have received.

Theme 1: Overwhelming Emotion

When asked “what is it like parenting a child with an ASD?” answers held strong emotional reactions as parents tried to explain their day-to-day lives. “Probably overwhelming and exhausting are the two best words to describe it. Overwhelming because he requires constant supervision. He can be very destructive. He can't communicate his needs very well…Exhausting because you can never let your guard down. Quite often you don't have a lot of relaxation time to kind of wind down before you crash.” Parents also explained “Every day is different, you never know what to expect.” Each parent described how and when their child received an ASD diagnosis; responses were rich with complex emotions, and many were related to interactions they experienced with their child's PCP during this time. Nine parents reported they did not receive a diagnosis until after their child's eighth birthday (68.7%). Others were initially misdiagnosed. Sadness over time that was lost and potential that may never be reached as a direct consequence of a later diagnosis were universal. Examining collective responses describing their child's ASD diagnosis revealed interactions of guilt, loss, and perceived judgment. Some parents reported they “knew something was wrong much earlier” but continued to hope it would “get better.” Another shared she did not want to give her child “a label” and denied the need for further evaluation as long as possible. She wept when she spoke of this choice expressing guilt and sadness over his current challenges, difficulties she believed could have been lessened with earlier support and intervention. Others expressed anger their concerns shared early on with their PCP were ignored or not fully respected. One parent who was initially told her child “would outgrow” the developmental concerns she expressed, felt personally responsible when he did not and believed she must have “done something wrong.” Another perceived feelings of judgment if she were unable to implement or comply with all therapy recommendations for her son due to time or financial restraints exclaiming, “They treat me like I haven't done everything I can do for him.” In contrast to these negative experiences of diagnosis, parents appreciated when their child's PCP would seek and respect their viewpoints regarding treatment plans. Consideration for quality of life issues, how other family members were affected, conveying empathy and offering support were all behaviors and attentions parents highly regarded. It is significant to note that 12 of the 16 children included in the study received an ASD diagnosis after the parent initially voiced concerns, advocated for an evaluation, or made an appointment with specialists for a formal

Parent Perceptions of Care for an Autism Spectrum Disorder evaluation. Teachers and school providers recommended developmental testing for 3 of the children, and a PCP referred 1 of families who had a previously identified sibling with ASD. Multiple factors should be considered when examining why the majority of these families received a diagnosis in later childhood. Some parents openly shared they tried to ignore alarming behaviors and were “in denial” of their child's developmental concerns. Others postponed definitive evaluations in hopes they would outgrow their issues or waited because they “did not feel ready” to accept the result. Others tried to believe symptoms were not actually present and discounted suggestions for further evaluations until they were ready, “Once I got a grip on reality, then I made the educational referral.” Many parents that shared higher levels of satisfaction with their child's PCP were also receiving ASD related services through an Autism Treatment Network or had qualified for, and were receiving service coordination through their county. Parents who described strong personal and professional support networks were more likely to share positive qualities they admired in their child and described behaviors they found endearing. They expressed more confidence in their ability to manage their needs and foster their development. This was often noted in parents who had more than one child with ASD, and in families where a longer period of time had elapsed from their initial diagnosis. “As they've gotten older I've been able to learn what they need, and been able to advocate and get it.” These parents expressed more self-assurance in selecting treatment options for their children; independently seeking community resources, and disagreeing with recommendations they did not feel were best for their family.

Theme 2: The Medical Home Is Only Medical When parents were asked to describe care received from their child's PCP, many descriptions primarily centered upon utilization for annual physicals, or with suspected illness. “A doctor now is literally just for, do you have a physical ailment? The school requires a physical. That's what the pediatrician is there for. The pediatrician has very little knowledge and ability to deal with the autism.” Anticipation for care or supervision beyond routine health maintenance or their child's needs interrelated to their ASD, was largely unmentioned. Views conveyed the PCP's principal role was to oversee physical health alone. “His job is just making sure he's staying healthy as he's growing over the next several years.” Most parents interviewed did not feel they could approach their child's PCP for information or advice on their child's disability, and many did not reveal an expectation that they should. One parent explained that “There's nothing that she can do [the pediatrician]… she doesn't do anything besides just being supportive.” Although parents described challenges and un-met needs that existed for their children, expectations for management of this care by their child's PCP (outside of their physical health focus) were generally absent. “I only take him when he's sick.”

25 Parents perceived supportive care was received when their child's PCP would approach them with empathy and understanding, although their ability to provide education and mange ASD related needs was not frequently described. The importance of feeling known, listened to, and having their personal views respected were paramount for parents who perceived their child was well cared for by their PCP. “She knows me, she knows my son, she knows how I parent, and she gets it…but that's a rarity I think.” These feelings were in contrast to the more dominant theme of the medical home being only strictly for medical needs. When asked to describe positive qualities care providers demonstrated, parents commonly responded he or she “just get it.” Parents appreciated feeling as though their PCP knew their family well, had taken the time to make a personal connection with their child, and had developed insight into their needs, personal beliefs and values. One parent described the importance of concentrating on strengths, individualizing care and “having them really listened to, really looked at, focusing, that people look at the positives, and that there aren't really limitations. It's just figuring out a different way of doing things for them.” Displaying patience when children were uncooperative with physical examination, explaining procedures before they were attempted, and trying to meaningfully interact and converse with their child were also viewed as important. Prompt responses when parents requested their PCP to complete paperwork needed for medical equipment, referrals, school recommendations or insurance purposes were also highly valued. Parents were appreciative of having their views sought when developing treatment care plans. When recommendations were not agreed upon, or parents believed another decision would have greater benefit for their child, parents who felt their feelings were respected and honestly considered by the PCP expressed greater satisfaction with their care. One mother appreciated how her PCP interacted with her son expressing how he treated her family with “Dignity and respect…respecting the fact I know my child better than anyone else.” They described positive relationships as “partnerships.” Parents valued when their PCP was “open to ideas,” and would research complementary and alternative medical treatments when information was desired or they had questions. Waiting rooms were noted to be a challenge. Parents described difficulties when their children became overwhelmed with unfamiliar people and surroundings outside of their home. “I am one to avoid the doctor's office until it's absolutely necessary, and when I have to bring him the most difficult part is waiting. Waiting rooms are not really designed for kids with sensory seeking issues.” Many would become very restless or increasingly agitated while waiting to see their PCP, resulting in decreased compliance with examinations or procedures. Parents perceived anger, annoyance and sometimes judgment from other parents or office support staff if their child displayed challenging behaviors or were uncooperative. Patience, tolerance, and

26 support for families seeking care were greatly appreciated by parents interviewed. “The doctor is good with [my son] He engages him as best he can, is tolerant of him jumping around while we're talking, and washing his hands, opening the door, beating on the window and all that kind of stuff.” Parents who reported their child's PCP could not always address ASD related issues still described satisfaction with their care if they perceived compassion, support and respect for their situation. “I want them to be knowledgeable, but I also want them to be genuine and empathetic, and I want them to come more from a positive.” PCPs who stayed informed and read reports from their child's school, specialist, and other service providers were highly regarded by parents. PCPs who displayed empathy and respect were held in high esteem by parents even when other service needs were not able to be met within their child's medical home. Conversely, frustration and anger were described when parents felt personal expertise on their own child was not respected, their concerns were ignored, their views were not sought, or if their child was not treated with dignity. When the PCP was unable to assist with a particular issue, parents valued honesty, compassion, and connection with a local resource or service provider that could assist their family. What Is Family Centered Care? While some parents explained their PCP was focused on their child's well-being, and did “not necessarily” feel they were “excluded” from family centered care, all were unfamiliar with the concept. One parent reported, “I don't really know that I understand family centered.” Others asked, “Is that a parent support group?” Or, “Is that a group home?” Many explained how different specialists caring for their child were each “within their own realm,” and every provider respectively held their own treatment plan for every service they accessed. When parents were asked to describe who managed “all care realms,” and individualized treatment for their family's needs, they generally responded, “I do.” Parents portrayed a need for “one source of information” for all of the resources available to their child, describing confusion and frustration because there was not one “central place to go” or a “general manager.” Some feared missed opportunities they may be “unaware of” or felt “overwhelmed” managing all of their child's care requirements and service providers. Parents receiving care through an Autism Treatment Network, Service Coordination or therapists providing individualized support for behaviors and challenges in the home were most likely to describe their child's care as “family centered.” PCPs who inquired about sibling and parent needs were also positively described. Parents felt they were “all cared for” when siblings were included in visits and their own needs were inquired about or supported. Parents additionally described the following difficulties related to their child's ASD diagnosis: supporting their learning needs, navigating special education, the school system, acquiring Medicaid Service Coordination, relation-

S. Russell, C.R. McCloskey ship tension in the home between siblings, spouses, family members, managing challenging behaviors, locating and accessing specialist services, and having others identify that their child had autism and special requirements. Parents in this study desired stronger connections between home, their child's school, specialists, therapists and their PCP. One parent described “I would really like to see one person just tell me what to do, be my navigator.... Who can my kids go see? Who can I go talk to? What support groups are there? Giving any information that maybe I have missed and supplying that to the pediatrician… just helping me navigate” Another parent noted that family centered care is impossible to deliver without first really knowing “me and my family.” Parent responses indicate overarching organization of care is needed and should be delivered with respect for every individual child and family's needs.

Theme 3: On Our Own Few families had support in the home for guidance managing challenging behaviors and felt they were on their own to figure it all out. “It can be somewhat isolating I guess, because most people don't get what it's like to be in your situation. Even well-meaning people will not understand you or your child, or what it's like to live in your house” Many parents expressed how everyday living and the need to constantly think and plan ahead to navigate activities for children with an ASD created unyielding demands. One mother stated, “Everything that you do on a day-to-day basis is a challenge.” Safety in the home required persistent vigilance and continuous monitoring. Parents described challenges preventing their child from harming themselves, wandering, running away, or being destructive within their home environment. “We have chain locks on every single door. He, of course, has no fear of the road. No fear of heights. No fear of anything. Keeping him safe is a full time job.” Routine visits to the doctor, dentist, attending a school concert, parade or a family meal require a lot of planning and place a great deal of stress on children with an ASD and their families. Shopping for groceries, getting haircuts, family outings, or running errands require much forethought and patience. Many parents expressed barriers when the needs of their children were not taken into account, or understood by their friends, family members, or the general public. Coordination of these combined entities resulted in feelings of isolation for some parents who were unable to leave the home with as much freedom or ease as they desired, or who felt judgment from others when their child behaved poorly in more public venues. Parents shared feelings of stress and hopelessness when they were unable to support or manage their child's toileting, sleep, grooming or feeding issues. Sensory seeking and challenging behaviors overwhelmed parents who were also struggling to communicate effectively with their child. Many did not feel that they could approach their child's PCP for help with these issues. Parents also noted their provider was unable to recommend or navigate other options that may be

Parent Perceptions of Care for an Autism Spectrum Disorder

27

available in the community. “I haven't really gone out and looked because, you know, I'm not going to get much out here. If we were near a larger place, there would be lots of places.” Many felt they were truly on their own to figure it out, as noted by this parent who stated “Autism is such a personalized kind of disorder that you can't just go to somebody and say, ‘Hey, what works for this?’ You have to make your way through yourself.” Some sought help from other friends with similar challenges, searched online, or were still actively searching. One mother described how she had been searching for “years” to connect with a therapist specializing in ASD, and cried when she said “There's got to be a specialist out there that can help, but I can't find anything. I can't find it in books. I can't.” Troubles tackling issues with toileting, grooming and sleep deregulation were frequently mentioned. Many parents expressed feelings of frustration that behavioral therapists and services specifically geared toward children with an ASD could not be found or were too far away to be conveniently accessed. A few parents received ongoing management through clinics specializing in developmental disability in addition to their child's PCP. Although this support was very beneficial for individualized management of their child's ASD and related needs, frequent trips to the clinic proved challenging. “It's not around the corner, no. You know you get there, you gotta park, you wait, you turn around, you come back home. It's two or three hours.” Parents reported the long commutes, time needed to receive services, cost of gas, financial hardship of a specialist co-pays, childcare for siblings and lost time from work, home and family responsibilities were all obstacles to routinely receiving this care for their child with ASD. Long wait times for initial consultation, were also reported. Some parents felt a “disconnect” between their PCP and any additional services, treatments or therapists they utilized outside of their child's medical home.

Lost Connections Parents described how impairments in their child's social communication affected their ability to interact with their child and others in the world around them with great sadness. “I remember when we got the diagnosis for (our child). The only thing that I left there with at that point was that your child's not going to have empathy, most likely won't connect with people, and it just destroyed me for a very long time” Sentiments pertaining to their child's inability to express feelings, communicate effectively or at times appearing “lost inside themselves” were difficult to describe for parents who mourned these lost connections with, and for their child. Some described feeling helpless and frustrated that they could not help their children to develop these skills, and felt a constant painful loss. Parents want their children to experience joy, fulfillment and develop meaningful relationships “I want to see him just be happy in life. I want to see him be loved. I want to see him love somebody.” Other parents shared struggles their children experienced establishing or maintaining peer relationships. Expressions of sadness that their child “did not have any friends,” intensified when they also shared their child didn't seem to notice or mind. One parent began to weep as she described “I think the biggest challenge is his social skills. His sisters have a lot of friends. He doesn't have any, so we see that as an issue for him. I don't think he interprets it as an issue at all, which is probably good.”

Guilt Many parents described feelings of guilt, and described how balancing attention and time was very difficult. Meeting needs of the family as a whole required abundant persistence and determination. “Have I juggled everyone evenly? Did I devote my time 10 minutes here and 10 minutes there? Did this person get enough attention from me today, or did I not give enough attention to this person?” Difficulties keeping peace and “harmony issues in the family” were frequently expressed by parents who were interviewed. Some siblings felt resentful for the amount of time and attention their sibling with ASD required, were unsympathetic to ritualistic behaviors, outbursts or their destructive actions. Some parents found it difficult to connect with or find time alone to be with their spouse. Stay at home parents sometimes felt their partners did not fully understand their child's needs, resulting in distance or resentment. “Not that my husband doesn't offer support, but he has a hard time gripping the whole autism diagnosis. He doesn't understand that when you may react this way to the problem at hand or what's

Unspoken Words Few parents had sought counseling for themselves. Others reported barriers connecting with therapists locally, hardships paying out of pocket for services, or simply not having the time. “Sometimes I'll think OH! I gotta ask somebody for help with this, but I'm so busy…I probably do miss out on some support just because I have to keep everything running along.” When questioned about personal support systems parents had great difficulty articulating how their individual needs were met, or describe what they were. Answers most commonly superseded their own person, and focused responses were given relating to the behavioral or support services their child received. A few parents received helpful behavioral management strategies for the home through their child's therapist, or sources outside of child's PCP. Some parents found it hard to describe challenging situations or behaviors they struggled with in front of their child to their PCP. Parents valued opportunities to email or call with needs as they arose, so they could openly describe issues without their child present.

going on, it may cause another problem to occur when you're trying to solve the current problem. I would like him to be more aware of what's going on.” Some parents communicated sheer exhaustion from always being on guard, and lacking time to relax. One parent described autism as consuming “every aspect” of their family's existence, and how they constantly struggled to live their life around it.

28 Upon further questioning when parents were directly asked, “Who provides you support?” many showed signs of distress, became silent, began to cry or avoided eye contact. Many did not know what to say, had to take a moment of silence or appeared overwhelmed when their emotional requirements were considered. Significant others, parents, siblings, and immediate family members were commonly identified as support systems for parents raising children with ASDs. Close friends who were similarly parenting children with developmental disability were also noted to be a significant source of encouragement, understanding and connection with resources. Some parents had heard of support groups but did not believe they would feel comfortable sharing their feelings so publicly. Needs of other family members, and the high frequency of appointments for their child with ASD were noted to be very time consuming, leaving little time for self-care. Although AAP management guidelines for children with ASD in primary care include the “Assessment of the parents coping skills, available resources and supports” (AAP, 2007) many stated that their child's PCP “never asked” how they were doing, or how they were handling the challenges of parenting their child with special needs. The tears and silent emotion in parent responses spoke clearly; there were needs that remain unaddressed and unsupported in these families.

Theme 4: School Related Stress Parents predominately described challenges with poor communication from their child's school district, a lack of flexibility, or refusal to individualize their child's educational program to meet their learning needs. “I want them to realize when we don't get that help or collaboration, the stress that it puts on the home life, the parent and the child!” Great importance was placed on feeling included in their child's program design, having their ideas listened to, and their input respected as the “expert” on their child. Parents explained how difficulties with executive functioning, social pragmatics and slow processing skills placed great burdens on their children who were often expected to complete work in the same time frame as their typical peers. Some parent felt their children were discriminated against when their disability was not taken into consideration, and expressed frustration that assignments were not modified to appropriately address their unique challenges and help their child gain academic success. “I keep telling them, He can't work at the same speed as the other kids, so this is not fair. This is discrimination. Why should he have to sit three hours or four hours working on things just to keep up with the other kids? His work needs to be modified!” Often their children would become very upset they could not keep up in class triggering feelings of unworthiness; this stress was then displaced to the home environment where they were expected to catch up all of their work. Parents already struggling to meet the needs of their family reported great challenges completing unfinished schoolwork in the evenings, often resulting in increased stress and discord. A great number of parents reported their children were not currently receiving any accommodations for their child

S. Russell, C.R. McCloskey through their school district, although they had a documented ASD. Children who had ASD without a co-occurring intellectual disability were often excluded from special education in smaller school districts, leaving their social, emotional and functional needs unsupported. Parents of children with an ASD who were not receiving special education or accommodations all expressed dissatisfaction with the lack of navigational support from their child's school district. When their children reached adolescence the increased social complexity of peer interactions combined with rising academic expectations augmented underlying psychiatric comorbidity. Four of the children in this study who were not supported in junior or senior high school had attempted suicide and were diagnosed with anxiety or depression. Parents frequently desired more input from their child's PCP regarding educational modifications and special education accommodations. Some parents noted that although PCPs read the school individual education plans and progress notes to stay informed, most would not make recommendations, advocate for services or advocate for unmet needs. Some parents felt their PCP would if requested, and others were concerned requesting recommendations may put them in an adversarial relationship with their child's district. One parent shared “she really relies more for the school to give her the feedback just so she can maintain a healthy relationship with them.” One parent had recommendations that were written, and the school district disregarded them. “Yes, he makes recommendations for modifications on his homework, which they do not want do at the school.” One parent thought it would be helpful for her child's PCP to attend Committee on Special Education meetings if possible to have true partnerships and communication between home, the school and her child's medical home. Parents interviewed expressed satisfaction when school accommodations were designed to reflect individual needs and strengths of their child, with program flexibility that supported change when new needs were recognized. Parents also described their appreciation for educators who could “think outside the box” and allowed their child to participate at their own speed and express themselves in their own way. Educators who “took time to get to know” their child and understand their uniqueness, were highly valued. A few parents shared their uneasiness when educational providers declare that they know a lot about autism without asking them to share their thoughts about their child. One mother explained her frustration with educators who felt they were experts after reading about ASD in a book and knew what recommendations were best without getting to know her child first. “Well you don't. You don't treat my child the same as you do any other autistic child. Each child is individual and they need to be treated that way.”

Theme 5: Future Goals Responses about maximizing independence and autonomy surfaced when parents were asked to describe future

Parent Perceptions of Care for an Autism Spectrum Disorder goals they wanted to identify for their children “I want to see him function independently in society. Those are my goals for him, just to see him thrive and do it all on his own.” Safety was frequently identified as a top priority and constant concern. Parents described aspirations for their child to function as “Independently as possible” and be an “informed decision maker” in their health care. Parents sharing struggles their children encountered developing peer relationships were hopeful they would feel acceptance from others, make friends, love and be loved. One parent hoped her child would have the ability to work through problems, take his medications without assistance, and grow more confident. One parent was happy just to get through the day and experience “little successes.” Another parent struggling with challenging behaviors shared “My goal is just to be able to continue to have him here as part of the family and have it be safe.” Universally parents desired their children to feel good about themselves, experience happiness, feel loved, connected to others and “worthy.” Many parents shared how initial goals changed after their child was diagnosed or had become older. Parent responses suggest development of social skills, supporting independent navigation of their environment, strengthening self-esteem and successes of children with ASD are important attributes and should be considered when constructing treatment plans. Centering management and care of children with ASD on developmental goals must be considered along with medical and educational objectives. Parents want PCPs to focus goals on their child's personal strengths and positive qualities. One parent shared “There aren't really limitations. It's just figuring out a different way of doing things for them.” A great number of the parents expressed uncertainty and fear when asked to share future goals for their child. One parent could not bring herself to list any for her son. She began to cry silently, sharing that she did not like to think about her son's future because she was so unsure of how it would turn out “Long-term kind of scares me. I don't really like to think about it because I don't know how he's going to be.” Parents expressed concerns over what would happen when they were gone, and who would oversee their child's general safety, health and well-being. These sentiments were often laden with emotion, uncertainty, pain and fear. Apprehension concerning safety for children with higher functioning ASD was frequently mentioned in regards to their future adult lives as well. Parents reported if their child did not have significant intellectual disability they were often expected to function with more independence and less support in their environments, leaving them vulnerable to unsafe situations and predators. “He doesn't always see the right and wrong of things that he does. Finances are non-existent; he has no idea how to handle money and he's taken advantage of all the time.” Safety was a top priority for all parents, and was frequently discussed when identifying goals for their child.

Discussion The AAP recommends primary care for all children through a medical home. This model endorses primary care

29 described as “accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective to every child and adolescent” (AAP, 2002). Participants in this study were largely unfamiliar with the terms “family centered” and “medical home.” Although evidenced based practice recommendations exist, they have been difficult to implement for children with ASD. These models, their intended definitions, and roles were generally unknown, or had yet to be fully described. Many parents did not utilize their child's PCP for ASD specific information and guidance, or did not have an expectation they should. The role of their child's PCP was primarily viewed for health maintenance, seeking care when an annual physical or acute medical attention was needed. It is significant to note the MPOC-20 results revealed parents rated their child's PCP highest in their ability to deliver supportive care, and lowest in their aptitude to provide general information about their child. While at first these statements appear contrasting, it can be explained in the words of one parent who stated, “There's nothing that she can do… she doesn't do anything besides just being supportive.” Participants in the study perceived they were receiving supportive care and rated their PCP highest in this quality if they felt compassion and empathy was received for their situation, even though their ability to provide general information about their child was lacking. These findings underscore a general misunderstanding and confusion of the intended role of their child's medical home. Others truly felt they were on their own, and were desperately searching for support independently. It was clear that all parents want a comprehensive resource for the family as a whole, with management over “all realms” of care accessible to their children. Most participants in this study did not receive this overarching, family centered resource or know who could provide this service. Parents were eager to share their voices to help others understand the struggles and challenges experienced in families like theirs. It is significant to note that participants in the study who perceived they were supported and had access to ASD specific health and related services, were more likely to express confidence in their ability to parent their children, and shared more optimistic family centered goals. The American Academy of pediatrics endorses that “all children” deserve and belong in a Medical Home (AAP, 2007). Research has validated the superior health outcomes, functioning, and well-being of parents raising children with ASD who are managed through this model, but less than half of all CSHCN are able to obtain this care (NSCH, 2012). Many factors must be evaluated when determining where the gap lies between current practice recommendations for children with ASD, and families who perceive they are not receiving them. PCPs are the initial gatekeepers of diagnosis, connection of resources, guidance, and support for families with known or suspected ASD. Implementation of ideal care models can be complicated by the dynamic presentation of physical, and mental health comorbidity often coexisting

30 within this population of children. Diversity in ASD symptom manifestation and severity combined with distinctly unique parent and familial circumstances, produce an extremely complex management requirement. Family centered care can only be provided with close parent partnerships, comprehensive family assessment and individualized care plans. These evaluations should occur through a child's medical home. Parents require education, connection with appropriate community resources, specialists, and ongoing support. It should be recognized that children with ASD and their families require lifelong provision, management and service coordination. Understanding parent perceptions and utilizing their voices for the foundation of care planning is essential for family centered care, and provision of the medical home model for children with ASD.

Conclusion Examining parent perceptions of care received for children with ASD provides greater understanding of their lived experience, unique challenges and unaddressed needs. Exploring parent insight additionally provides new implications for PCPs to address care deficits that have great potential to positively or negatively affect child and family functioning. Holistic assessment is foundational to the profession of nursing. Advanced practice registered nurses (APRNs) are well suited to care for children with ASD. Wellness promotion and multi-dimensional, holistic perspectives of patient care are both hallmarks of advanced nursing practice. As APRNs assume a larger scope of practice and independence, opportunities to care for children with ASD and support their families will continue to develop. More research is needed to explore how APRNs could provide chronic care management to this special population of children with CSHCN.

Acknowledgments Dr. John Kirchgessner - For his enthusiasm and support. Dr. Stephanie Townsend - For her invaluable insight and encouragement.

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