Families, Systems, & Health 2014, Vol. 32, No. 3, 328 –337
© 2014 American Psychological Association 1091-7527/14/$12.00 http://dx.doi.org/10.1037/a0037180
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
Managing the Health Care Needs of Adolescents With Autism Spectrum Disorder: The Parents’ Experience Julie A. Strunk, PhD, RN
Rita Pickler, PhD, RN, PNP-BC, FAAN
James Madison University
Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio
Nancy L. McCain, DSN, RN, FAAN, Suzanne Ameringer, PhD, RN, and Barbara J. Myers, PhD Virginia Commonwealth University Parents of adolescents with autism spectrum disorder (ASD) experience the challenges of navigating the health care system, locating information about ASD, lacking an understanding of prescribed medications, and experiencing minimal social support from health care providers. The purpose of this phenomenological study was to describe the experiences of parents who manage the health needs of an adolescent with ASD. Qualitative interviews were conducted at a university setting with 12 parents of 10 adolescents with ASD residing in Central Virginia. Data were analyzed using Moustakas’ method in which the phenomenologist asks the following questions: What are the individual’s experiences and in what context did they experience them? This study maximized credibility using 3 strategies: prolonged engagement, peer debriefing, and member checking. “Parents needing assistance” emerged as the essence of the parents’ experiences. Four themes representing the essential challenging elements of the parents’ experiences included concern with medications, frustrations with health care services, recognizing secondary health issues, and the need for resources and services. Findings of the current study revealed key factors to be considered in the development and delivery of health care for adolescents with ASD. These include creating and planning interventions for parents, sharing information about resources and services, and collaborating with others in the health care field. Additional research, both qualitative and quantitative, is needed to understand how parents and adolescents with ASD experience this transitional period. Keywords: adolescents’ health care, autism spectrum disorder, health care needs, parents, phenomenology
Parenting a child with an autism spectrum disorder (ASD) can be very stressful because of the number and nature of symptoms asso-
This article was published Online First June 9, 2014. Julie A. Strunk, PhD, RN, Department of Nursing, James Madison University; Rita Pickler, PhD, RN, PNP-BC, FAAN, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio; Nancy L. McCain, DSN, RN, FAAN, and Suzanne Ameringer, PhD, RN, School of Nursing, Virginia Commonwealth University; Barbara J. Myers, PhD, School of Psychology, Virginia Commonwealth University. Correspondence concerning this article should be addressed to Julie A. Strunk, PhD, RN, Department of Nursing, James Madison University, MSC 4305, 820 Madison Drive, Harrisonburg, VA 22807. E-mail: [email protected]
ciated with the disorder and because of the child’s inability to communicate effectively, difficulty in learning, and inappropriate and sometimes aggressive or violent behaviors (Davis & Carter, 2008; Hoffman et al., 2008; Hoffman, Sweeney, Hodge, Lopez-Wagner, & Looney, 2009; Larson, 2010; Myers, Mackintosh, & Goin-Kochel, 2009; Phetrasuwan & Miles, 2009). Other parenting challenges include the child’s ongoing dependency as well as the need for parents to advocate within the school, medical setting, social settings, and to plan for the child’s future (Altiere, & von Kluge, 2009; Benson & Karlof, 2009; Bilgin & Kucuk, 2010; Brobst, Clopton, & Hendrick, 2009; Estes et al., 2009; Kayfitz,
328
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
HEALTH CARE NEEDS OF ADOLESCENTS WITH ASD
Gragg, & Orr, 2010; Lee et al., 2009; Myers et al., 2009; Phelps, McCammon, Wuensch, & Golden, 2009; Phetrasuwan & Miles, 2009; Pottie, Cohen, & Ingram, 2009; Rao & Beidel, 2009; Wachtel & Carter, 2008; Woodgate, Ateah, & Secco, 2008). Most parents consider adolescence to be a critical transition period and a very stressful time because of the adolescent’s increase in independence and experimentation, which can lead to risky behaviors (McNeely & Blanchard, 2009; Mulye et al., 2009; Orpinas, Home, Song, Reeves, & Hsieh, 2013; South, Dana, White, & Crowley, 2011). Adolescents with autism have the same basic health care needs as adolescents who do not have ASD (Cole, 2008; Strunk, 2009), however they tend to experience higher levels of stress, decreased physical activity, unsafe sexual activity, and depression and suicide (Cappadocia, Weiss, & Pepler, 2012; Mosconi et al., 2009; Pouw, Rieffe, Stockmann, & Gadow, 2013; Storch et al., 2013; van Steensel, Bögels, & Perrin, 2011). This study focused on the parents’ experience of managing the health care needs of the adolescent with ASD. No studies have specifically investigated this topic. There is a need to describe these experiences and to develop services and interventions to improve the management of the adolescent’s health care needs given the increasing numbers of children diagnosed with ASD. Method Design A qualitative, phenomenological method was used to ascertain parents’ perspectives of managing the health care needs of adolescents with ASD because this method focuses on the experiences of individuals (Creswell, 2007). Phenomenology studies generally involve a small sample, usually no more than 10 (Creswell, 1998; Sandelowski, 1995). We selected parents of children with ASD who were willing to be interviewed for the study. Parents were excluded if they were not the primary caregiver of the adolescent or if the adolescent with ASD was adopted.
329
Setting and Participants We conducted interviews with participants at a University in central Virginia; parents were recruited by newspaper advertisement and by word of mouth from other parents. Fifteen parents contacted the researcher; 3 parents had children who were in their twenties, making them ineligible for the study. Twelve parents (mother, father, or both) of 10 adolescents with ASD between the ages of 10 to 18 were interviewed; no parents withdrew. The study was approved by two university institutional review boards, and all participants were given an informed consent form explaining the nature of the study as well as information regarding how data would be shared and how confidentially would be maintained. Data Collection Interviews with one or both parents were audiotaped; interviews lasted 1 to 3 hours. The interviewer used open-ended questions with follow-up questions for clarification (refer to Table 1). Open-ended probes (Tell me more? or How did that make you feel?) were used as necessary to facilitate parents’ telling their stories. Care was taken not to introduce concepts that would have biased parents’ responses. The first author conducted all interviews, took field notes describing the interview, and transcribed all audiotapes. Data Analysis Data were analyzed using Moustakas’ (1994) method of phenomenological analysis because of its methodological fit with the study purpose. The first step in the analysis process involved setting aside the research-
Table 1 Guiding Questions 1. Tell me what it is like to be the parent of an adolescent who has autism. 2. How have you changed as a parent since your child entered adolescence? 3. Tell me about your adolescent’s healthcare needs. 4. How do you manage your adolescent’s healthcare needs? 5. Do you have help in managing your adolescent’s healthcare needs?
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
330
STRUNK, PICKLER, MCCAIN, AMERINGER, AND MYERS
er’s biases and views regarding the health care needs and behavior of adolescents with ASD (Moustakas, 1994). This was accomplished by keeping a journal of recorded thoughts, biases, and knowledge regarding ASD. The second step consisted of reading through the interview transcripts and field notes (a written reconstruction of the conversations that took place after the completion of the interview), which were taken by the interviewer/primary researcher, and then drawing out significant statements (Kakulu, Byrne, & Viitanen, 2009). Statements that were deemed irrelevant to the topic as well as those which were repeated or overlapping were set aside. The third step consisted of examining the identified significant statements and clustering them into themes or meaning units (Kakulu et al., 2009). The fourth step consisted of the development of textual descriptions for each participant that described the “what” of the experience and structural descriptions for each participant that described “how” it was experienced (Kakulu et al., 2009). The researcher accomplished this by retelling the story using descriptive words for the “what” of the experience and then elaborating on these words to describe “how” the experience was perceived. The last step of the analysis process consisted of constructing the essence of the phenomenon or the shared meaning of the experience as related by the parents (Kakulu et al., 2009). This study maximized credibility by using three strategies: prolonged engagement, peer debriefing, and member checking. Prolonged engagement was accomplished through the
interview process and through participation in support groups in which these parents were involved. The transcription process allowed the primary researcher greater immersion into the data. Peer debriefing was accomplished by using several peers (including the second author) who are experts in qualitative research. The peers were given transcripts and the primary researcher’s interpretations, which led to discussing interpretations and voicing concerns. Member checking was accomplished by giving the research participants a summary of the data and allowing for feedback. This feedback was useful in the analysis and interpretation of data and in drawing conclusions. Few changes or queries were raised; these were noted in the final, composite description. In qualitative research, responsibility for transferability falls to both the researcher and the person seeking to apply the information (Lincoln & Guba, 1985). Transferability was enhanced in this study by maintaining an inquiry audit consisting of notes related to the data collection and analysis process, by placing researcher reactions and thoughts on the original transcript, and by consulting with experienced and qualified experts to review the consistency of the research process (Lincoln & Guba, 1985). Findings Twelve parents participated in the study over a data collection period of four months. Table 2 shows the characteristics and perceptions of the
Table 2 Demographics Marital status
Child’s age (years)
Child’s gender
Mother (Mary) Mother (Martha)
Second marriage Second marriage
11 10 and 12
Boy Boys
Mother (Jane) Father and mother (Arthur and Allison) Father and mother (Andrew and Rebecca) Mother (Linda) Mother (Erin) Mother (Kelly) Mother (Elizabeth) Mother (Amy)
Second marriage First marriage First marriage First marriage First marriage First marriage First marriage First marriage
18 18 13 18 12 12 13 11
Boy Girl Boy Boy Girl Boy Girl Boy
Participant with pseudonyms
Parent/s’ perceived level of function of the adolescent High functioning 10-year-old: Severe 12-year-old: High functioning High functioning Severe High functioning Severe High functioning High functioning High functioning High functioning
HEALTH CARE NEEDS OF ADOLESCENTS WITH ASD
participants concerning their children’s level of functioning.
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
The Essence of the Parents’ Experiences: Parents Needing Assistance The essence, “parents needing assistance,” defined what it was like to manage the health care needs of an adolescent with ASD. Although the participants were parents of children from across the ASD spectrum, they shared similar experiences. Parents stated that they were responsible for “learning about autism without help” from their health care providers after their child received a diagnosis. In “needing assistance,” parents described feelings of despair in dealing with the health care system. This sense of despair is described as arising from four main sources. Inadequate health care services. Parents expressed feelings of helplessness because of their frustration with health care in general and a lack of understanding of what autism is and what is involved in managing health care needs for adolescents with autism. Parents stated there was a lack of medical personnel specifically qualified to work with adolescents with ASD and that parents had to learn about autism and medications on their own. Parents stated that they often felt rushed during their adolescent’s appointments: You can’t determine what a child needs, especially what a child or teenager needs in that 15 minutes time. There’s just no way. When your treating a teenager with ASD, it’s not like burning off a wart or treating a cold or whatever, you’re treating a lot of different issues, psychological issues and each teenager is different so you can’t treat each teenager the same, which makes it even more, complicated.
Parents also stated that their adolescent was receiving fragmented health care and that there was no consistency or collaboration between physical and mental health services. Parents also spoke about the financial burden associated with their adolescent’s health care due to the many health care visits and the lack of insurance coverage for required therapies. Wanting to be listened to. Parents were concerned about the many medications their adolescent was taking and they expressed fear regarding the negative consequences of longterm medication use. Moreover, parents stated that there was no advocacy for their adoles-
331
cent’s health care needs. Parents expressed feelings of helplessness from their perception that physicians were either not interested in what they had to say or were just too busy to listen: I need help and you know it was at the point where he wanted to hurt himself I was told “well we can’t do anything until he hurts himself or somebody else.” You’re telling me that until he commits suicide, then you’ll listen to me? So that was a little frustrating.
Having concerns related to comorbidities, behavioral issues, and safety. Parents expressed feelings of helplessness about the challenges they experienced with their adolescent’s behavioral and health care issues. Parents voiced concerns about sleep, nutrition, toileting, dental health, hygiene, and hormonal changes. They also spoke about uncontrolled emotional outbursts, obsessive– compulsive tendencies, the need for complete structure without any changes or disruptions to schedules or routines, and the difficulties associated with medication compliance. Parents also voiced concerns about their adolescent’s knowledge of what is and is not safe behavior: Being impulsive has landed us in the emergency room. He’s jumped out of moving cars and that’s scary.
Having to educate others and self. Parents’ lack of resources and knowledge further contributed to their sense of helplessness. Parents voiced concern about having to search for answers to questions dealing with the management of their adolescent’s ASD. Parents also voiced concerns about the lack of services and resources available to help their adolescent with behavioral health issues. And yet, they were willing to do whatever it took to get help: There again you have to beg and ask for medical/ behavioral services. It’s not just somebody advertising “hey we do this for autism.” We cannot do it without services out in the community. I have to look online or look in books or call somebody or another mom might have told me this might have worked, try it.
Themes Supporting the Essence Four themes were distilled during the integration of the individual participants’ structural and textural statements: concern with medications, frustrations with health care services, recognizing secondary health issues, and the need for resources and services.
332
STRUNK, PICKLER, MCCAIN, AMERINGER, AND MYERS
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
Theme 1: Concerns about medications. Parents often stated that they were worried about the type and amount of medication their adolescent was prescribed. For example, Mary, the mother of an 11-year-old high functioning boy with ASD, stated: It’s very frustrating for me because he’s on an enormous amount of medication. I want to know the side effects. I want to know if this is this going to make him sterile, or if it will affect his liver or his heart.
about ASD. Rebecca, Andrew’s wife and the mother of a 13-year-old boy, stated: I felt like I had to educate the doctors regarding my son’s autism.
Parents were also frustrated with the inadequate care and attention their adolescent received from primary care providers. Erin, the mother of a 13-year-old high functioning girl, stated:
I read those medical warnings about suicidal risk and all that kind of stuff and it just sets me in a panic.
It was very frustrating for me to have a doctor, who sees her but doesn’t really know her, to look at her chart and state that she’s all drama and not take the moment as being legitimate for what it is. I really wish we had a pediatrician that worked hand-in-hand with us for all these kinds of things, seeing her as a whole person and not just someone with ASD.
Jane, the mother of a high functioning 18year-old boy also said:
This sentiment was repeated by Kelly, who stated:
I’m kind of conflicted because I don’t want to overmedicate my child; however, if the medication is going to help him and if it’s something that’s going to be very beneficial to him, then I’m all for it.
I just got frustrated with the whole medical community, kind of feeling like they were blowing me off and were not just helping me so I kind of stopped going down that road.
There were also concerns about the difficulty in getting their adolescent to take medications. Parents of older adolescents stated that their adolescent didn’t want to be different from his or her peers, as Kelly, the mother of a high functioning 12-year-old boy said:
Many parents voiced concerns about how they were perceived negatively as parents and how their adolescents were negatively treated. Allison, the mother of an 18-year-old girl described as severely affected, stated:
Martha, the mother of two boys, 11 and 12 years of age, severe and high functioning, respectively, echoed that statement, saying:
He just wants to be like the other kids so he quit taking his meds.
Some parents stated that medication compliance was difficult because their adolescent seemed afraid to take prescribed medication. Others stated that they had to be very exact in their wording in order for the adolescent to understand their directions in taking medication. There was also anxiety related to whether or not their children were being treated as “guinea pigs,” as Andrew, the father of a 13-year-old boy who was described as high functioning said: I don’t know what [role] the drug companies play in all of this but I’m sure that there’s more pressure for people to try drugs that maybe they shouldn’t be trying.
Theme 2: Frustration with health care services. Parents voiced their frustrations about health care services. They stated that they had little faith in the health care community because of lack of general knowledge
Some doctors acted like we were just totally stupid and would not listen [to us].
Amy, the mother of a high functioning 11year-old boy, was frustrated because the physician was visibly uncomfortable working with her son, stating: I’ve taken my son to a doctor who really didn’t know how to deal with him, so he told us to not come back.
Finally, parents spoke about the challenges managing specific medical procedures such as the adolescent receiving an injection, having blood drawn, or dental care. They spoke of the importance of preparing the adolescent before any medical procedure. Some procedures such as dental care required that the adolescent be anesthetized and parents voiced concern regarding the continued use of anesthetics. As Andrew stated: It’s very difficult to take him to the doctor’s office because he is so hard to manage. He will have a meltdown. It often takes several people to hold him down if he needs an injection.
HEALTH CARE NEEDS OF ADOLESCENTS WITH ASD
And Linda, the mother of a severely affected 18-year-old boy, noted:
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
The dentist has to completely put him to sleep. He won’t even get in the chair awake. Should he be receiving this every 6 months? Will it hurt him?
Theme 3: Recognizing secondary health issues. All parents voiced concerns about the number of secondary health issues their adolescent experienced, including seizures, constipation and diarrhea, celiac disease, and lactose intolerance. Elizabeth, the mother of a high functioning 13-year-old girl, stated: She’s not only autistic, she’s epileptic and it is timeconsuming with that, and so with taking care of all her medical needs I had to quit work.
Parents also addressed problems with personal hygiene, sleep, and safety. As Andrew stated: I have to really stay on him about brushing his teeth and taking a shower. We have to make sure that he’s using soap on his whole body. They’re very literal you know.
Linda expressed other concerns about her son: Sleep is probably the biggest stressor. He’ll just wander around the yard at night and you’ll just see him looking in our window.
Safety was also voiced as a concern because the adolescent lacked the ability to understand the concepts of harm and danger. Some parents of older adolescents voiced concerns about dealing with their child’s hormonal changes and the effects this had on the adolescent’s behavior. Several spoke of their uneasiness with issues surrounding menstruation. Others spoke about concerns dealing with masturbation and unsafe sexual behavior as well as other risky behaviors. Martha, the parent of a younger, child stated: He’s a huge safety risk; he doesn’t understand safety or the concepts of safety. He doesn’t understand that if he stands in the road flapping his hands he could get hit by a car and die.
And Jane, parent of an 18-year old high functioning child, stated: Somebody dared my son to snort a whole pill of OxyContin and he did and it almost killed him.
Several parents talked about their adolescents’ inabilities to make good choices in dress-
333
ing modestly and their inability to recognize problems such as unwanted attention, sexual harassment, and possible rape that could ensue once secondary sexual characteristics started to develop. As stated by Erin: I’ve always been just so worried about her that I want to control the environment mainly just to make sure she stays safe. I think it’s hard for any mom, but especially having a child who doesn’t always use the best judgment. You know not always sure she’s thinking about her safety and things like that when she’s going off to the lake in a revealing tank top and walking off by herself.
Theme 4: Need for specific resources. Parents voiced a concern about the lack of services in general for adolescents with ASD and repeatedly spoke about the need for specific resources and assistance managing their adolescents’ health care issues. Many parents stated that they wished there were more services for their children and that physicians knew what to do. As Elizabeth stated: I don’t feel that there’s been enough [research] in different areas in adolescents or in the younger ages to know how to adequately treat these children.
And parents talked about the specific need for educating not only themselves but others as well. Arthur stated: I feel like I’m a fighter and I have to investigate it myself.
There was a general consensus among parents that services were needed for their adolescents to function successfully at home, at school, and in the community. Parents noted that they depended on community services and resources. Parents stated they did not get support and referrals from the health care community; they indicated they were totally responsible for finding their own services and resources. Parents Arthur and Allison said: You have to beg and ask for medical services. It’s not just somebody advertising that they’re doing this for autism.
Discussion The aim of this study was to gain a better understanding of the lived experience of parents managing the health care needs of their adolescent with ASD. Parents talked about their parenting role and other aspects of their lives that were essential to their experience. Children of
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
334
STRUNK, PICKLER, MCCAIN, AMERINGER, AND MYERS
participating parents fell across both ends of the ASD spectrum, yet all parents had similar experiences with health care management and their adolescent. The essence of the parents’ experiences can be summarized as needing assistance in managing their adolescent’s health care needs. This essence was revealed in the four themes that were found in the integration of each participant parent’s interpreted experience: concerns about medications, frustration with health care services, recognizing secondary health issues, and need for specific resources. Our current health care system lacks the collaborative process that links children and families to services and resources in a coordinated way, which may contribute to parents’ perceptions of confusion and inconsistent care (Carbone, Behl, Azor, & Murphy, 2010). Negative opinions toward the health care system may be attributable to the lack of collaborative care. This was demonstrated in the current study in a number of ways consistent with prior studies. For example, parents stated that physicians inadequately advocated for special services for their adolescent child and lacked needed expertise providing care to their child (Brachlow, Ness, McPheeters, & Gurney, 2007; Liptak et al., 2006). Parents reported differences in their perception of what they thought they needed and what their child’s physician thought they needed (Golnik, Scal, Wey, & Gaillard, 2012). Parents also stated that they did not receive comprehensive and coordinated care for their adolescent/s and that their pediatricians/therapists seemed ill equipped to meet their needs (Carbone et al., 2010; Liptak et al., 2006; Brachlow et al., 2007). Parents voiced concerns regarding a lack of care coordination across service sectors including educational supports, behavioral therapists, medical therapists, and subspecialty physicians (Golnik et al., 2012; Brachlow et al., 2007; Kogan et al., 2008; Carbone et al., 2010). Parents also reported problems receiving referrals and obtaining family support services (Thomas, Ellis, McLaurin, Daniels, & Morrissey, 2007). A “medical home” has been proposed as a mechanism to provide support and coordinate multiple service systems for families of children with ASD (Hyman & Johnson, 2012; Committee on Children with Disabilities, 2001; Murphy & Carbone, 2011). A medical home is defined as health care delivery systems that provide primary medical care in an accessible, continuous, comprehensive, family centered, coordi-
nated, compassionate, and culturally effective way (American Academy of Pediatrics, 2002). Denboba and colleagues (2006) found that family based medical homes develop mutual trust, respect, and shared decision-making between physicians and families. Establishing medical homes as a system level change may produce sustainable progress toward the delivery of better medical and community services (Carbone et al., 2010). The medical home would provide necessary interprofessional collaboration to enhance the positive outcomes of the adolescent with ASD as well as provide the parent with a sense of continuity of care. Parents interviewed for this study did not have an established medical home for their adolescents. Although the overall health outcomes of medical homes have not yet been established (Hyman & Johnson, 2012), it is possible that parents of adolescents with ASD would benefit from a model of familiar and consistent care delivery. The experiences of the parents who participated in this study emphasize the need for system level changes that can produce sustainable progress toward effective health care. Limitations This research had some limitations. A methodological limitation consisted of ensuring bracketing, which could have led to bias in data interpretation. Efforts to control this limitation included the use of peer debriefers and member checking. Study participants may not have been representative of all parents who have an adolescent with ASD, resulting in a second limitation. Generalizability is not a goal or a possibility in phenomenological studies. However, we have sought to make the study findings potentially applicable by providing as complete a description as possible. Other limitations include a sample lacking cultural diversity and one mainly composed of mothers. We recognize these limitations and suggest that a broader study of these parents and their children is needed. Despite these limitations, our findings help to further the understanding of what it is like to manage the health care needs of adolescents with autism, which may help professionals provide more comprehensive and sensitive care. The findings are important in light of the growing incidence of autism (Centers for Disease Control, 2012).
HEALTH CARE NEEDS OF ADOLESCENTS WITH ASD
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
Recommendations Health care providers can assist parents to overcome frustrations and challenges by becoming more aware of the ASD spectrum of neurobiological disorders, by creating and planning interventions for parents, by sharing information regarding resources and services, and by collaborating with others in the health care field to provide services for adolescents and their families (Loutzenhiser & Hadjistavropoulos, 2008). Additional research, both qualitative and quantitative, is needed to more fully understand the experience of both parents and their adolescents with ASD (Kogan et al., 2008). Further research may also help identify specific needs of adolescents and families as well the usefulness of existing resources and treatments (American Academy of Pediatrics Autism Expert Panel, 2007; Carbone et al., 2010; Johnson & Myers, 2007; Myers & Johnson, 2007; Rao & Beidel, 2009; Waisman Center, 2008). Future work should be directed toward intervention studies involving the parent, as “expert,” in teaching the professional how to assist parents of adolescents with autism.
References Altiere, M. J., & von Kluge, S. (2009). Family functioning and coping behaviors in parents of children with autism. Journal of Child and Family Studies, 18, 83–92. doi:10.1007/s10826-008-9209-y American Academy of Pediatrics. (2002). The medical home. Pediatrics, 110, 184 –186. American Academy of Pediatrics Autism Expert Panel. (2007). Autism: Caring for children with autism spectrum disorders: A resource toolkit for clinicians. Elk Grove, IL: American Academy of Pediatrics. Benson, P. R., & Karlof, K. L. (2009). Anger, stress proliferation, and depressed mood among parents of children with ASD: A longitudinal replication. Journal of Autism and Developmental Disorders, 39, 350 –362. doi:10.1007/s10803-008-0632-0 Bilgin, H., & Kucuk, L. (2010). Raising an autistic child: Perspectives from Turkish mothers. Journal of Child and Adolescent Psychiatric Nursing, 23, 92–99. doi:10.1111/j.1744-6171.2010.00228.x Brachlow, A. E., Ness, K. K., McPheeters, M. L., & Gurney, J. G. (2007). Comparison of indicators for a primary care medical home between children with autism or asthma and other special health care needs: National survey of children’s health. Ar-
335
chives of Pediatrics and Adolescent Medicine, 161, 399 – 405. doi:10.1001/archpedi.161.4.399 Brobst, J. B., Clopton, J. R., & Hendrick, S. S. (2009). Parenting children with autism spectrum disorders: The couple’s relationship. Focus on Autism and Other Developmental Disabilities, 24, 38 – 49. doi:10.1177/1088357608323699 Cappadocia, M. C., Weiss, J. A., & Pepler, D. (2012). Bullying experiences among children and youth with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42, 266 –277. doi: 10.1007/s10803-011-1241-x Carbone, P. S., Behl, D. D., Azor, V., & Murphy, N. A. (2010). The medical home for children with Autism Spectrum Disorders: Parent and pediatrician perspectives. Journal of Autism and Developmental Disorders, 40, 317–324. doi:10.1007/ s10803-009-0874-5 Centers for Disease Control and Prevention [CDC]. (2012). Autism spectrum disorders (ASDs) data and statistics. Retrieved from http://www.cdc.gov/ NCBDDD/autism/data.html Cole, L. L. (2008). Autism in school-age children a complex collage of development, behavior and communication. Advance for Nurse Practitioners, 16, 38 – 47. Committee on Children with Disabilities, American Academy of Pediatrics. (2001). Role of the pediatrician in family-centered early intervention services. Pediatrics, 107, 1155–1157. doi:10.1542/ peds.107.5.1155 Creswell, J. W. (1998). Qualitative inquiry and research design: Choosing among five traditions. Thousand Oaks, CA: Sage. Creswell, J. W. (2007). Five qualitative approaches to inquiry. In Qualitative inquiry and research design: Choosing among five approaches (2nd ed., pp. 85–100). Thousand Oaks, CA: Sage. Davis, N. O., & Carter, A. S. (2008). Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: Associations with child characteristics. Journal of Autism and Developmental Disorders, 38, 1278 –1291. doi:10.1007/s10803007-0512-z Denboba, D., McPherson, M. G., Kenny, M. K., Strickland, B., & Newacheck, P. W. (2006). Achieving family and provider partnerships for children with special health care needs. Pediatrics, 118, 1607–1615. doi:10.1542/peds.2006-0383 Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X.-H., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism, 13, 375–387. doi:10.1177/13623 61309105658 Golnik, A., Scal, P., Wey, A., & Gaillard, P. (2012). Autism-specific primary care medical home intervention. Journal of Autism and Developmental
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
336
STRUNK, PICKLER, MCCAIN, AMERINGER, AND MYERS
Disorders, 42, 1087–1093. doi:10.1007/s10803011-1351-5 Hoffman, C. D., Sweeney, D. P., Hodge, D., LopezWagner, M. C., & Looney, L. (2009). Parenting stress and closeness: Mothers of typically developing children and mothers of children with autism. Focus on Autism and Other Developmental Disabilities, 24, 178 –187. doi:10.1177/1088357609338715 Hoffman, C. D., Sweeney, D. P., Lopez-Wagner, M. C., Hodge, D., Nam, C. Y., & Botts, B. H. (2008). Children with autism: Sleep problems and mothers’ stress. Focus on Autism and Other Developmental Disabilities, 23, 155–165. doi: 10.1177/1088357608316271 Hyman, S. L., & Johnson, J. K. (2012). Autism and pediatric practice: Toward a medical home. Journal of Autism and Developmental Disorders, 42, 1156 –1164. doi:10.1007/s10803-012-1474-3 Johnson, C. P., & Myers, S. M. (2007). Identification and evaluation of children with autism spectrum disorders. Pediatrics, 120, 1183–1215. doi:10.1542/ peds.2007-2361 Kakulu, I. I., Byrne, P., & Viitanen, K. (2009). Phenomenological research in compulsory land acquisition and compensation. In FIG working week. Retrieved from http://www.fig.net/pub/fig2009/papers/ ts07e/ts07e_kakulu_byrne_viitanen_3448.pdf Kayfitz, A. D., Gragg, M. N., & Orr, R. R. (2010). Positive experiences of mothers and fathers of children with autism. Journal of Applied Research in Intellectual Disabilities, 23, 337–343. doi: 10.1111/j.1468-3148.2009.00539.x Kogan, M. D., Strickland, B., Blumberg, S., Singh, G., Perrin, J., & van Dyck, P. (2008). A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005–2006. Pediatrics, 122, e1149 – e1158. doi:10.1542/peds.2008-1057 Larson, E. (2010). Ever vigilant: Maternal support of participation in daily life for boys with autism. Physical & Occupational Therapy in Pediatrics, 30, 16 –27. doi:10.3109/01942630903297227 Lee, G. K., Lopata, C., Main, A. V., Thomeer, M. L., Nida, R. E., Toomey, J. A., . . . Smerbeck, A. M. (2009). Health-related quality of life of parents of children with high-functioning autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 24, 227–239. doi:10.1177/ 1088357609347371 Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Newbury Park, CA: Sage. Liptak, G. S., Orlando, M., Yingling, J. T., TheurerKaufman, K. L., Malay, D. P., Tompkins, L. A., & Flynn, J. R. (2006). Satisfaction with primary health care received by families of children with developmental disabilities. Journal of Pediatric Health Care, 20, 245–252. doi:10.1016/j.pedhc .2005.12.008
Loutzenhiser, L., & Hadjistavropoulos, H. (2008). Enhancing interprofessional patient-centered practice for children with autism spectrum disorders: A pilot project with pre-licensure health students. Journal of Interprofessional Care, 22, 429 – 431. doi:10.1080/13561820801886487 McNeely, C., & Blanchard, J. (2009). The teen years explained: A guide to healthy adolescent development. Baltimore, MD: Johns Hopkins Bloomberg School of Public Health, Center for Adolescent Health. Retrieved from http://www.jhsph.edu/ adolescenthealth Mosconi, M. W., Cody-Hazlett, H., Poe, M. D., Gerig, G., Gimpel-Smith, R., & Piven, J. (2009). Longitudinal study of amygdala volume and joint attention in 2- to 4-year-old children with autism. Archives of General Psychiatry, 66, 509 –516. doi: 10.1001/archgenpsychiatry.2009.19 Moustakas, C. (1994). Phenomenological research methods. Thousand Oaks, CA: Sage. Mulye, T. P., Park, M. J., Nelson, C. D., Adams, S. H., Irwin, C. E., & Brindis, C. D. (2009). Trends in adolescent and young adult health in the United States. Journal of Adolescent Health, 45, 8 –24. doi:10.1016/j.jadohealth.2009.03.013 Murphy, N., & Carbone, P. (2011). Parent-providercommunity partnerships: Optimizing outcomes for children with disabilities. Pediatrics, 128, 795– 802. doi:10.1542/peds.2011-1467 Myers, B. J., Mackintosh, V. H., & Goin-Kochel, R. P. (2009). “My greatest joy and my greatest heartache:” Parents’ own words on how having a child in the autism spectrum has affected their lives and their families’ lives. Research in Autism Spectrum Disorders, 3, 670 – 684. doi:10.1016/j .rasd.2009.01.004 Myers, S. M., & Johnson, C. P. (2007). Management of children with autism spectrum disorders. Pediatrics, 120, 1162–1182. doi:10.1542/peds.20072362 Orpinas, P., Home, A. M., Song, X., Reeves, P. M., & Hsieh, H.-L. (2013). Dating trajectories from middle to high school: Association with academic performance and drug use. Journal of Research on Adolescence, 23, 772–784. doi:10.1111/jora.12029 Phelps, K. W., McCammon, S. L., Wuensch, K. L., & Golden, J. A. (2009). Enrichment, stress, and growth from parenting an individual with an autism spectrum disorder. Journal of Intellectual and Developmental Disability, 34, 133–141. doi: 10.1080/13668250902845236 Phetrasuwan, S., & Miles, M. S. (2009). Parenting stress in mothers of children with autism spectrum disorders. Journal for Specialists in Pediatric Nursing, 14, 157–165. doi:10.1111/j.1744-6155 .2009.00188.x Pottie, C. G., Cohen, J., & Ingram, K. M. (2009). Parenting a child with autism: Contextual factors
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
HEALTH CARE NEEDS OF ADOLESCENTS WITH ASD
associated with enhanced daily parental mood. Journal of Pediatric Psychology, 34, 419 – 429. doi:10.1093/jpepsy/jsn094 Pouw, L. B., Rieffe, C., Stockmann, L., & Gadow, K. D. (2013). The link between emotion regulation, social functioning, and depression in boys with ASD. Research in Autism Spectrum Disorders, 7, 549 –556. doi:10.1016/j.rasd.2013.01.002 Rao, P. A., & Beidel, D. C. (2009). The impact of children with high-functioning autism on parental stress, sibling adjustment, and family functioning. Behavior Modification, 33, 437– 451. doi:10.1177/ 0145445509336427 Sandelowski, M. (1995). Focus on qualitative methods: Sample sizes in qualitative research. Research in Nursing & Health, 18, 179 –183. doi:10.1002/ nur.4770180211 South, M., Dana, J., White, S. E., & Crowley, M. J. (2011). Failure is not an option: Risk-taking is moderated by anxiety and also by cognitive ability in children and adolescents diagnosed with an autism spectrum disorder. Journal of Autism and Developmental Disorders, 41, 55– 65. doi: 10.1007/s10803-010-1021-z Storch, E. A., Sulkowski, M. L., Nadeau, J., Lewin, A. B., Arnold, E. B., Mutch, P. J., . . . Murphy, T. K. (2013). The phenomenology and clinical correlates of suicidal thoughts and behaviors in youth with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43, 2450 – 2459.
337
Strunk, J. A. (2009). School nurses’ knowledge of autism spectrum disorders. The Journal of School Nursing, 25, 445– 452. doi:10.1177/1059840 509348221 Thomas, K. C., Ellis, A. R., McLaurin, C., Daniels, J., & Morrissey, J. P. (2007). Access to care for autism-related services. Journal of Autism and Developmental Disorders, 37(10), 1902–1912. doi: 10.1007/s10803-006-0323-7 van Steensel, F. J., Bögels, S. M., & Perrin, S. (2011). Anxiety disorders in children and adolescents with autistic spectrum disorders: A meta-analysis. Clinical Child and Family Psychology Review, 14, 302–317. doi:10.1007/s10567-011-0097-0 Wachtel, K., & Carter, A. S. (2008). Reaction to diagnosis and parenting styles among mothers of children with ASDs. Autism, 12, 575–594. doi: 10.1177/1362361308094505 Waisman Center. (2008). Medical home services for autism spectrum disorders. Retrieved from http:// www.waisman.wisc.edu/cedd/guidelines/ Woodgate, R. L., Ateah, C., & Secco, L. (2008). Living in a world of our own: The experience of parents who have a child with autism. Qualitative Health Research, 18, 1075–1083. doi:10.1177/ 1049732308320112 Received July 18, 2012 Revision received January 29, 2014 Accepted May 16, 2014 䡲
© 2014 American Psychological Association 1091-7527/14/$12.00 http://dx.doi.org/10.1037/a0037180
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
Managing the Health Care Needs of Adolescents With Autism Spectrum Disorder: The Parents’ Experience Julie A. Strunk, PhD, RN
Rita Pickler, PhD, RN, PNP-BC, FAAN
James Madison University
Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio
Nancy L. McCain, DSN, RN, FAAN, Suzanne Ameringer, PhD, RN, and Barbara J. Myers, PhD Virginia Commonwealth University Parents of adolescents with autism spectrum disorder (ASD) experience the challenges of navigating the health care system, locating information about ASD, lacking an understanding of prescribed medications, and experiencing minimal social support from health care providers. The purpose of this phenomenological study was to describe the experiences of parents who manage the health needs of an adolescent with ASD. Qualitative interviews were conducted at a university setting with 12 parents of 10 adolescents with ASD residing in Central Virginia. Data were analyzed using Moustakas’ method in which the phenomenologist asks the following questions: What are the individual’s experiences and in what context did they experience them? This study maximized credibility using 3 strategies: prolonged engagement, peer debriefing, and member checking. “Parents needing assistance” emerged as the essence of the parents’ experiences. Four themes representing the essential challenging elements of the parents’ experiences included concern with medications, frustrations with health care services, recognizing secondary health issues, and the need for resources and services. Findings of the current study revealed key factors to be considered in the development and delivery of health care for adolescents with ASD. These include creating and planning interventions for parents, sharing information about resources and services, and collaborating with others in the health care field. Additional research, both qualitative and quantitative, is needed to understand how parents and adolescents with ASD experience this transitional period. Keywords: adolescents’ health care, autism spectrum disorder, health care needs, parents, phenomenology
Parenting a child with an autism spectrum disorder (ASD) can be very stressful because of the number and nature of symptoms asso-
This article was published Online First June 9, 2014. Julie A. Strunk, PhD, RN, Department of Nursing, James Madison University; Rita Pickler, PhD, RN, PNP-BC, FAAN, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio; Nancy L. McCain, DSN, RN, FAAN, and Suzanne Ameringer, PhD, RN, School of Nursing, Virginia Commonwealth University; Barbara J. Myers, PhD, School of Psychology, Virginia Commonwealth University. Correspondence concerning this article should be addressed to Julie A. Strunk, PhD, RN, Department of Nursing, James Madison University, MSC 4305, 820 Madison Drive, Harrisonburg, VA 22807. E-mail: [email protected]
ciated with the disorder and because of the child’s inability to communicate effectively, difficulty in learning, and inappropriate and sometimes aggressive or violent behaviors (Davis & Carter, 2008; Hoffman et al., 2008; Hoffman, Sweeney, Hodge, Lopez-Wagner, & Looney, 2009; Larson, 2010; Myers, Mackintosh, & Goin-Kochel, 2009; Phetrasuwan & Miles, 2009). Other parenting challenges include the child’s ongoing dependency as well as the need for parents to advocate within the school, medical setting, social settings, and to plan for the child’s future (Altiere, & von Kluge, 2009; Benson & Karlof, 2009; Bilgin & Kucuk, 2010; Brobst, Clopton, & Hendrick, 2009; Estes et al., 2009; Kayfitz,
328
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
HEALTH CARE NEEDS OF ADOLESCENTS WITH ASD
Gragg, & Orr, 2010; Lee et al., 2009; Myers et al., 2009; Phelps, McCammon, Wuensch, & Golden, 2009; Phetrasuwan & Miles, 2009; Pottie, Cohen, & Ingram, 2009; Rao & Beidel, 2009; Wachtel & Carter, 2008; Woodgate, Ateah, & Secco, 2008). Most parents consider adolescence to be a critical transition period and a very stressful time because of the adolescent’s increase in independence and experimentation, which can lead to risky behaviors (McNeely & Blanchard, 2009; Mulye et al., 2009; Orpinas, Home, Song, Reeves, & Hsieh, 2013; South, Dana, White, & Crowley, 2011). Adolescents with autism have the same basic health care needs as adolescents who do not have ASD (Cole, 2008; Strunk, 2009), however they tend to experience higher levels of stress, decreased physical activity, unsafe sexual activity, and depression and suicide (Cappadocia, Weiss, & Pepler, 2012; Mosconi et al., 2009; Pouw, Rieffe, Stockmann, & Gadow, 2013; Storch et al., 2013; van Steensel, Bögels, & Perrin, 2011). This study focused on the parents’ experience of managing the health care needs of the adolescent with ASD. No studies have specifically investigated this topic. There is a need to describe these experiences and to develop services and interventions to improve the management of the adolescent’s health care needs given the increasing numbers of children diagnosed with ASD. Method Design A qualitative, phenomenological method was used to ascertain parents’ perspectives of managing the health care needs of adolescents with ASD because this method focuses on the experiences of individuals (Creswell, 2007). Phenomenology studies generally involve a small sample, usually no more than 10 (Creswell, 1998; Sandelowski, 1995). We selected parents of children with ASD who were willing to be interviewed for the study. Parents were excluded if they were not the primary caregiver of the adolescent or if the adolescent with ASD was adopted.
329
Setting and Participants We conducted interviews with participants at a University in central Virginia; parents were recruited by newspaper advertisement and by word of mouth from other parents. Fifteen parents contacted the researcher; 3 parents had children who were in their twenties, making them ineligible for the study. Twelve parents (mother, father, or both) of 10 adolescents with ASD between the ages of 10 to 18 were interviewed; no parents withdrew. The study was approved by two university institutional review boards, and all participants were given an informed consent form explaining the nature of the study as well as information regarding how data would be shared and how confidentially would be maintained. Data Collection Interviews with one or both parents were audiotaped; interviews lasted 1 to 3 hours. The interviewer used open-ended questions with follow-up questions for clarification (refer to Table 1). Open-ended probes (Tell me more? or How did that make you feel?) were used as necessary to facilitate parents’ telling their stories. Care was taken not to introduce concepts that would have biased parents’ responses. The first author conducted all interviews, took field notes describing the interview, and transcribed all audiotapes. Data Analysis Data were analyzed using Moustakas’ (1994) method of phenomenological analysis because of its methodological fit with the study purpose. The first step in the analysis process involved setting aside the research-
Table 1 Guiding Questions 1. Tell me what it is like to be the parent of an adolescent who has autism. 2. How have you changed as a parent since your child entered adolescence? 3. Tell me about your adolescent’s healthcare needs. 4. How do you manage your adolescent’s healthcare needs? 5. Do you have help in managing your adolescent’s healthcare needs?
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
330
STRUNK, PICKLER, MCCAIN, AMERINGER, AND MYERS
er’s biases and views regarding the health care needs and behavior of adolescents with ASD (Moustakas, 1994). This was accomplished by keeping a journal of recorded thoughts, biases, and knowledge regarding ASD. The second step consisted of reading through the interview transcripts and field notes (a written reconstruction of the conversations that took place after the completion of the interview), which were taken by the interviewer/primary researcher, and then drawing out significant statements (Kakulu, Byrne, & Viitanen, 2009). Statements that were deemed irrelevant to the topic as well as those which were repeated or overlapping were set aside. The third step consisted of examining the identified significant statements and clustering them into themes or meaning units (Kakulu et al., 2009). The fourth step consisted of the development of textual descriptions for each participant that described the “what” of the experience and structural descriptions for each participant that described “how” it was experienced (Kakulu et al., 2009). The researcher accomplished this by retelling the story using descriptive words for the “what” of the experience and then elaborating on these words to describe “how” the experience was perceived. The last step of the analysis process consisted of constructing the essence of the phenomenon or the shared meaning of the experience as related by the parents (Kakulu et al., 2009). This study maximized credibility by using three strategies: prolonged engagement, peer debriefing, and member checking. Prolonged engagement was accomplished through the
interview process and through participation in support groups in which these parents were involved. The transcription process allowed the primary researcher greater immersion into the data. Peer debriefing was accomplished by using several peers (including the second author) who are experts in qualitative research. The peers were given transcripts and the primary researcher’s interpretations, which led to discussing interpretations and voicing concerns. Member checking was accomplished by giving the research participants a summary of the data and allowing for feedback. This feedback was useful in the analysis and interpretation of data and in drawing conclusions. Few changes or queries were raised; these were noted in the final, composite description. In qualitative research, responsibility for transferability falls to both the researcher and the person seeking to apply the information (Lincoln & Guba, 1985). Transferability was enhanced in this study by maintaining an inquiry audit consisting of notes related to the data collection and analysis process, by placing researcher reactions and thoughts on the original transcript, and by consulting with experienced and qualified experts to review the consistency of the research process (Lincoln & Guba, 1985). Findings Twelve parents participated in the study over a data collection period of four months. Table 2 shows the characteristics and perceptions of the
Table 2 Demographics Marital status
Child’s age (years)
Child’s gender
Mother (Mary) Mother (Martha)
Second marriage Second marriage
11 10 and 12
Boy Boys
Mother (Jane) Father and mother (Arthur and Allison) Father and mother (Andrew and Rebecca) Mother (Linda) Mother (Erin) Mother (Kelly) Mother (Elizabeth) Mother (Amy)
Second marriage First marriage First marriage First marriage First marriage First marriage First marriage First marriage
18 18 13 18 12 12 13 11
Boy Girl Boy Boy Girl Boy Girl Boy
Participant with pseudonyms
Parent/s’ perceived level of function of the adolescent High functioning 10-year-old: Severe 12-year-old: High functioning High functioning Severe High functioning Severe High functioning High functioning High functioning High functioning
HEALTH CARE NEEDS OF ADOLESCENTS WITH ASD
participants concerning their children’s level of functioning.
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
The Essence of the Parents’ Experiences: Parents Needing Assistance The essence, “parents needing assistance,” defined what it was like to manage the health care needs of an adolescent with ASD. Although the participants were parents of children from across the ASD spectrum, they shared similar experiences. Parents stated that they were responsible for “learning about autism without help” from their health care providers after their child received a diagnosis. In “needing assistance,” parents described feelings of despair in dealing with the health care system. This sense of despair is described as arising from four main sources. Inadequate health care services. Parents expressed feelings of helplessness because of their frustration with health care in general and a lack of understanding of what autism is and what is involved in managing health care needs for adolescents with autism. Parents stated there was a lack of medical personnel specifically qualified to work with adolescents with ASD and that parents had to learn about autism and medications on their own. Parents stated that they often felt rushed during their adolescent’s appointments: You can’t determine what a child needs, especially what a child or teenager needs in that 15 minutes time. There’s just no way. When your treating a teenager with ASD, it’s not like burning off a wart or treating a cold or whatever, you’re treating a lot of different issues, psychological issues and each teenager is different so you can’t treat each teenager the same, which makes it even more, complicated.
Parents also stated that their adolescent was receiving fragmented health care and that there was no consistency or collaboration between physical and mental health services. Parents also spoke about the financial burden associated with their adolescent’s health care due to the many health care visits and the lack of insurance coverage for required therapies. Wanting to be listened to. Parents were concerned about the many medications their adolescent was taking and they expressed fear regarding the negative consequences of longterm medication use. Moreover, parents stated that there was no advocacy for their adoles-
331
cent’s health care needs. Parents expressed feelings of helplessness from their perception that physicians were either not interested in what they had to say or were just too busy to listen: I need help and you know it was at the point where he wanted to hurt himself I was told “well we can’t do anything until he hurts himself or somebody else.” You’re telling me that until he commits suicide, then you’ll listen to me? So that was a little frustrating.
Having concerns related to comorbidities, behavioral issues, and safety. Parents expressed feelings of helplessness about the challenges they experienced with their adolescent’s behavioral and health care issues. Parents voiced concerns about sleep, nutrition, toileting, dental health, hygiene, and hormonal changes. They also spoke about uncontrolled emotional outbursts, obsessive– compulsive tendencies, the need for complete structure without any changes or disruptions to schedules or routines, and the difficulties associated with medication compliance. Parents also voiced concerns about their adolescent’s knowledge of what is and is not safe behavior: Being impulsive has landed us in the emergency room. He’s jumped out of moving cars and that’s scary.
Having to educate others and self. Parents’ lack of resources and knowledge further contributed to their sense of helplessness. Parents voiced concern about having to search for answers to questions dealing with the management of their adolescent’s ASD. Parents also voiced concerns about the lack of services and resources available to help their adolescent with behavioral health issues. And yet, they were willing to do whatever it took to get help: There again you have to beg and ask for medical/ behavioral services. It’s not just somebody advertising “hey we do this for autism.” We cannot do it without services out in the community. I have to look online or look in books or call somebody or another mom might have told me this might have worked, try it.
Themes Supporting the Essence Four themes were distilled during the integration of the individual participants’ structural and textural statements: concern with medications, frustrations with health care services, recognizing secondary health issues, and the need for resources and services.
332
STRUNK, PICKLER, MCCAIN, AMERINGER, AND MYERS
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
Theme 1: Concerns about medications. Parents often stated that they were worried about the type and amount of medication their adolescent was prescribed. For example, Mary, the mother of an 11-year-old high functioning boy with ASD, stated: It’s very frustrating for me because he’s on an enormous amount of medication. I want to know the side effects. I want to know if this is this going to make him sterile, or if it will affect his liver or his heart.
about ASD. Rebecca, Andrew’s wife and the mother of a 13-year-old boy, stated: I felt like I had to educate the doctors regarding my son’s autism.
Parents were also frustrated with the inadequate care and attention their adolescent received from primary care providers. Erin, the mother of a 13-year-old high functioning girl, stated:
I read those medical warnings about suicidal risk and all that kind of stuff and it just sets me in a panic.
It was very frustrating for me to have a doctor, who sees her but doesn’t really know her, to look at her chart and state that she’s all drama and not take the moment as being legitimate for what it is. I really wish we had a pediatrician that worked hand-in-hand with us for all these kinds of things, seeing her as a whole person and not just someone with ASD.
Jane, the mother of a high functioning 18year-old boy also said:
This sentiment was repeated by Kelly, who stated:
I’m kind of conflicted because I don’t want to overmedicate my child; however, if the medication is going to help him and if it’s something that’s going to be very beneficial to him, then I’m all for it.
I just got frustrated with the whole medical community, kind of feeling like they were blowing me off and were not just helping me so I kind of stopped going down that road.
There were also concerns about the difficulty in getting their adolescent to take medications. Parents of older adolescents stated that their adolescent didn’t want to be different from his or her peers, as Kelly, the mother of a high functioning 12-year-old boy said:
Many parents voiced concerns about how they were perceived negatively as parents and how their adolescents were negatively treated. Allison, the mother of an 18-year-old girl described as severely affected, stated:
Martha, the mother of two boys, 11 and 12 years of age, severe and high functioning, respectively, echoed that statement, saying:
He just wants to be like the other kids so he quit taking his meds.
Some parents stated that medication compliance was difficult because their adolescent seemed afraid to take prescribed medication. Others stated that they had to be very exact in their wording in order for the adolescent to understand their directions in taking medication. There was also anxiety related to whether or not their children were being treated as “guinea pigs,” as Andrew, the father of a 13-year-old boy who was described as high functioning said: I don’t know what [role] the drug companies play in all of this but I’m sure that there’s more pressure for people to try drugs that maybe they shouldn’t be trying.
Theme 2: Frustration with health care services. Parents voiced their frustrations about health care services. They stated that they had little faith in the health care community because of lack of general knowledge
Some doctors acted like we were just totally stupid and would not listen [to us].
Amy, the mother of a high functioning 11year-old boy, was frustrated because the physician was visibly uncomfortable working with her son, stating: I’ve taken my son to a doctor who really didn’t know how to deal with him, so he told us to not come back.
Finally, parents spoke about the challenges managing specific medical procedures such as the adolescent receiving an injection, having blood drawn, or dental care. They spoke of the importance of preparing the adolescent before any medical procedure. Some procedures such as dental care required that the adolescent be anesthetized and parents voiced concern regarding the continued use of anesthetics. As Andrew stated: It’s very difficult to take him to the doctor’s office because he is so hard to manage. He will have a meltdown. It often takes several people to hold him down if he needs an injection.
HEALTH CARE NEEDS OF ADOLESCENTS WITH ASD
And Linda, the mother of a severely affected 18-year-old boy, noted:
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
The dentist has to completely put him to sleep. He won’t even get in the chair awake. Should he be receiving this every 6 months? Will it hurt him?
Theme 3: Recognizing secondary health issues. All parents voiced concerns about the number of secondary health issues their adolescent experienced, including seizures, constipation and diarrhea, celiac disease, and lactose intolerance. Elizabeth, the mother of a high functioning 13-year-old girl, stated: She’s not only autistic, she’s epileptic and it is timeconsuming with that, and so with taking care of all her medical needs I had to quit work.
Parents also addressed problems with personal hygiene, sleep, and safety. As Andrew stated: I have to really stay on him about brushing his teeth and taking a shower. We have to make sure that he’s using soap on his whole body. They’re very literal you know.
Linda expressed other concerns about her son: Sleep is probably the biggest stressor. He’ll just wander around the yard at night and you’ll just see him looking in our window.
Safety was also voiced as a concern because the adolescent lacked the ability to understand the concepts of harm and danger. Some parents of older adolescents voiced concerns about dealing with their child’s hormonal changes and the effects this had on the adolescent’s behavior. Several spoke of their uneasiness with issues surrounding menstruation. Others spoke about concerns dealing with masturbation and unsafe sexual behavior as well as other risky behaviors. Martha, the parent of a younger, child stated: He’s a huge safety risk; he doesn’t understand safety or the concepts of safety. He doesn’t understand that if he stands in the road flapping his hands he could get hit by a car and die.
And Jane, parent of an 18-year old high functioning child, stated: Somebody dared my son to snort a whole pill of OxyContin and he did and it almost killed him.
Several parents talked about their adolescents’ inabilities to make good choices in dress-
333
ing modestly and their inability to recognize problems such as unwanted attention, sexual harassment, and possible rape that could ensue once secondary sexual characteristics started to develop. As stated by Erin: I’ve always been just so worried about her that I want to control the environment mainly just to make sure she stays safe. I think it’s hard for any mom, but especially having a child who doesn’t always use the best judgment. You know not always sure she’s thinking about her safety and things like that when she’s going off to the lake in a revealing tank top and walking off by herself.
Theme 4: Need for specific resources. Parents voiced a concern about the lack of services in general for adolescents with ASD and repeatedly spoke about the need for specific resources and assistance managing their adolescents’ health care issues. Many parents stated that they wished there were more services for their children and that physicians knew what to do. As Elizabeth stated: I don’t feel that there’s been enough [research] in different areas in adolescents or in the younger ages to know how to adequately treat these children.
And parents talked about the specific need for educating not only themselves but others as well. Arthur stated: I feel like I’m a fighter and I have to investigate it myself.
There was a general consensus among parents that services were needed for their adolescents to function successfully at home, at school, and in the community. Parents noted that they depended on community services and resources. Parents stated they did not get support and referrals from the health care community; they indicated they were totally responsible for finding their own services and resources. Parents Arthur and Allison said: You have to beg and ask for medical services. It’s not just somebody advertising that they’re doing this for autism.
Discussion The aim of this study was to gain a better understanding of the lived experience of parents managing the health care needs of their adolescent with ASD. Parents talked about their parenting role and other aspects of their lives that were essential to their experience. Children of
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
334
STRUNK, PICKLER, MCCAIN, AMERINGER, AND MYERS
participating parents fell across both ends of the ASD spectrum, yet all parents had similar experiences with health care management and their adolescent. The essence of the parents’ experiences can be summarized as needing assistance in managing their adolescent’s health care needs. This essence was revealed in the four themes that were found in the integration of each participant parent’s interpreted experience: concerns about medications, frustration with health care services, recognizing secondary health issues, and need for specific resources. Our current health care system lacks the collaborative process that links children and families to services and resources in a coordinated way, which may contribute to parents’ perceptions of confusion and inconsistent care (Carbone, Behl, Azor, & Murphy, 2010). Negative opinions toward the health care system may be attributable to the lack of collaborative care. This was demonstrated in the current study in a number of ways consistent with prior studies. For example, parents stated that physicians inadequately advocated for special services for their adolescent child and lacked needed expertise providing care to their child (Brachlow, Ness, McPheeters, & Gurney, 2007; Liptak et al., 2006). Parents reported differences in their perception of what they thought they needed and what their child’s physician thought they needed (Golnik, Scal, Wey, & Gaillard, 2012). Parents also stated that they did not receive comprehensive and coordinated care for their adolescent/s and that their pediatricians/therapists seemed ill equipped to meet their needs (Carbone et al., 2010; Liptak et al., 2006; Brachlow et al., 2007). Parents voiced concerns regarding a lack of care coordination across service sectors including educational supports, behavioral therapists, medical therapists, and subspecialty physicians (Golnik et al., 2012; Brachlow et al., 2007; Kogan et al., 2008; Carbone et al., 2010). Parents also reported problems receiving referrals and obtaining family support services (Thomas, Ellis, McLaurin, Daniels, & Morrissey, 2007). A “medical home” has been proposed as a mechanism to provide support and coordinate multiple service systems for families of children with ASD (Hyman & Johnson, 2012; Committee on Children with Disabilities, 2001; Murphy & Carbone, 2011). A medical home is defined as health care delivery systems that provide primary medical care in an accessible, continuous, comprehensive, family centered, coordi-
nated, compassionate, and culturally effective way (American Academy of Pediatrics, 2002). Denboba and colleagues (2006) found that family based medical homes develop mutual trust, respect, and shared decision-making between physicians and families. Establishing medical homes as a system level change may produce sustainable progress toward the delivery of better medical and community services (Carbone et al., 2010). The medical home would provide necessary interprofessional collaboration to enhance the positive outcomes of the adolescent with ASD as well as provide the parent with a sense of continuity of care. Parents interviewed for this study did not have an established medical home for their adolescents. Although the overall health outcomes of medical homes have not yet been established (Hyman & Johnson, 2012), it is possible that parents of adolescents with ASD would benefit from a model of familiar and consistent care delivery. The experiences of the parents who participated in this study emphasize the need for system level changes that can produce sustainable progress toward effective health care. Limitations This research had some limitations. A methodological limitation consisted of ensuring bracketing, which could have led to bias in data interpretation. Efforts to control this limitation included the use of peer debriefers and member checking. Study participants may not have been representative of all parents who have an adolescent with ASD, resulting in a second limitation. Generalizability is not a goal or a possibility in phenomenological studies. However, we have sought to make the study findings potentially applicable by providing as complete a description as possible. Other limitations include a sample lacking cultural diversity and one mainly composed of mothers. We recognize these limitations and suggest that a broader study of these parents and their children is needed. Despite these limitations, our findings help to further the understanding of what it is like to manage the health care needs of adolescents with autism, which may help professionals provide more comprehensive and sensitive care. The findings are important in light of the growing incidence of autism (Centers for Disease Control, 2012).
HEALTH CARE NEEDS OF ADOLESCENTS WITH ASD
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
Recommendations Health care providers can assist parents to overcome frustrations and challenges by becoming more aware of the ASD spectrum of neurobiological disorders, by creating and planning interventions for parents, by sharing information regarding resources and services, and by collaborating with others in the health care field to provide services for adolescents and their families (Loutzenhiser & Hadjistavropoulos, 2008). Additional research, both qualitative and quantitative, is needed to more fully understand the experience of both parents and their adolescents with ASD (Kogan et al., 2008). Further research may also help identify specific needs of adolescents and families as well the usefulness of existing resources and treatments (American Academy of Pediatrics Autism Expert Panel, 2007; Carbone et al., 2010; Johnson & Myers, 2007; Myers & Johnson, 2007; Rao & Beidel, 2009; Waisman Center, 2008). Future work should be directed toward intervention studies involving the parent, as “expert,” in teaching the professional how to assist parents of adolescents with autism.
References Altiere, M. J., & von Kluge, S. (2009). Family functioning and coping behaviors in parents of children with autism. Journal of Child and Family Studies, 18, 83–92. doi:10.1007/s10826-008-9209-y American Academy of Pediatrics. (2002). The medical home. Pediatrics, 110, 184 –186. American Academy of Pediatrics Autism Expert Panel. (2007). Autism: Caring for children with autism spectrum disorders: A resource toolkit for clinicians. Elk Grove, IL: American Academy of Pediatrics. Benson, P. R., & Karlof, K. L. (2009). Anger, stress proliferation, and depressed mood among parents of children with ASD: A longitudinal replication. Journal of Autism and Developmental Disorders, 39, 350 –362. doi:10.1007/s10803-008-0632-0 Bilgin, H., & Kucuk, L. (2010). Raising an autistic child: Perspectives from Turkish mothers. Journal of Child and Adolescent Psychiatric Nursing, 23, 92–99. doi:10.1111/j.1744-6171.2010.00228.x Brachlow, A. E., Ness, K. K., McPheeters, M. L., & Gurney, J. G. (2007). Comparison of indicators for a primary care medical home between children with autism or asthma and other special health care needs: National survey of children’s health. Ar-
335
chives of Pediatrics and Adolescent Medicine, 161, 399 – 405. doi:10.1001/archpedi.161.4.399 Brobst, J. B., Clopton, J. R., & Hendrick, S. S. (2009). Parenting children with autism spectrum disorders: The couple’s relationship. Focus on Autism and Other Developmental Disabilities, 24, 38 – 49. doi:10.1177/1088357608323699 Cappadocia, M. C., Weiss, J. A., & Pepler, D. (2012). Bullying experiences among children and youth with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42, 266 –277. doi: 10.1007/s10803-011-1241-x Carbone, P. S., Behl, D. D., Azor, V., & Murphy, N. A. (2010). The medical home for children with Autism Spectrum Disorders: Parent and pediatrician perspectives. Journal of Autism and Developmental Disorders, 40, 317–324. doi:10.1007/ s10803-009-0874-5 Centers for Disease Control and Prevention [CDC]. (2012). Autism spectrum disorders (ASDs) data and statistics. Retrieved from http://www.cdc.gov/ NCBDDD/autism/data.html Cole, L. L. (2008). Autism in school-age children a complex collage of development, behavior and communication. Advance for Nurse Practitioners, 16, 38 – 47. Committee on Children with Disabilities, American Academy of Pediatrics. (2001). Role of the pediatrician in family-centered early intervention services. Pediatrics, 107, 1155–1157. doi:10.1542/ peds.107.5.1155 Creswell, J. W. (1998). Qualitative inquiry and research design: Choosing among five traditions. Thousand Oaks, CA: Sage. Creswell, J. W. (2007). Five qualitative approaches to inquiry. In Qualitative inquiry and research design: Choosing among five approaches (2nd ed., pp. 85–100). Thousand Oaks, CA: Sage. Davis, N. O., & Carter, A. S. (2008). Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: Associations with child characteristics. Journal of Autism and Developmental Disorders, 38, 1278 –1291. doi:10.1007/s10803007-0512-z Denboba, D., McPherson, M. G., Kenny, M. K., Strickland, B., & Newacheck, P. W. (2006). Achieving family and provider partnerships for children with special health care needs. Pediatrics, 118, 1607–1615. doi:10.1542/peds.2006-0383 Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X.-H., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism, 13, 375–387. doi:10.1177/13623 61309105658 Golnik, A., Scal, P., Wey, A., & Gaillard, P. (2012). Autism-specific primary care medical home intervention. Journal of Autism and Developmental
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
336
STRUNK, PICKLER, MCCAIN, AMERINGER, AND MYERS
Disorders, 42, 1087–1093. doi:10.1007/s10803011-1351-5 Hoffman, C. D., Sweeney, D. P., Hodge, D., LopezWagner, M. C., & Looney, L. (2009). Parenting stress and closeness: Mothers of typically developing children and mothers of children with autism. Focus on Autism and Other Developmental Disabilities, 24, 178 –187. doi:10.1177/1088357609338715 Hoffman, C. D., Sweeney, D. P., Lopez-Wagner, M. C., Hodge, D., Nam, C. Y., & Botts, B. H. (2008). Children with autism: Sleep problems and mothers’ stress. Focus on Autism and Other Developmental Disabilities, 23, 155–165. doi: 10.1177/1088357608316271 Hyman, S. L., & Johnson, J. K. (2012). Autism and pediatric practice: Toward a medical home. Journal of Autism and Developmental Disorders, 42, 1156 –1164. doi:10.1007/s10803-012-1474-3 Johnson, C. P., & Myers, S. M. (2007). Identification and evaluation of children with autism spectrum disorders. Pediatrics, 120, 1183–1215. doi:10.1542/ peds.2007-2361 Kakulu, I. I., Byrne, P., & Viitanen, K. (2009). Phenomenological research in compulsory land acquisition and compensation. In FIG working week. Retrieved from http://www.fig.net/pub/fig2009/papers/ ts07e/ts07e_kakulu_byrne_viitanen_3448.pdf Kayfitz, A. D., Gragg, M. N., & Orr, R. R. (2010). Positive experiences of mothers and fathers of children with autism. Journal of Applied Research in Intellectual Disabilities, 23, 337–343. doi: 10.1111/j.1468-3148.2009.00539.x Kogan, M. D., Strickland, B., Blumberg, S., Singh, G., Perrin, J., & van Dyck, P. (2008). A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005–2006. Pediatrics, 122, e1149 – e1158. doi:10.1542/peds.2008-1057 Larson, E. (2010). Ever vigilant: Maternal support of participation in daily life for boys with autism. Physical & Occupational Therapy in Pediatrics, 30, 16 –27. doi:10.3109/01942630903297227 Lee, G. K., Lopata, C., Main, A. V., Thomeer, M. L., Nida, R. E., Toomey, J. A., . . . Smerbeck, A. M. (2009). Health-related quality of life of parents of children with high-functioning autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 24, 227–239. doi:10.1177/ 1088357609347371 Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Newbury Park, CA: Sage. Liptak, G. S., Orlando, M., Yingling, J. T., TheurerKaufman, K. L., Malay, D. P., Tompkins, L. A., & Flynn, J. R. (2006). Satisfaction with primary health care received by families of children with developmental disabilities. Journal of Pediatric Health Care, 20, 245–252. doi:10.1016/j.pedhc .2005.12.008
Loutzenhiser, L., & Hadjistavropoulos, H. (2008). Enhancing interprofessional patient-centered practice for children with autism spectrum disorders: A pilot project with pre-licensure health students. Journal of Interprofessional Care, 22, 429 – 431. doi:10.1080/13561820801886487 McNeely, C., & Blanchard, J. (2009). The teen years explained: A guide to healthy adolescent development. Baltimore, MD: Johns Hopkins Bloomberg School of Public Health, Center for Adolescent Health. Retrieved from http://www.jhsph.edu/ adolescenthealth Mosconi, M. W., Cody-Hazlett, H., Poe, M. D., Gerig, G., Gimpel-Smith, R., & Piven, J. (2009). Longitudinal study of amygdala volume and joint attention in 2- to 4-year-old children with autism. Archives of General Psychiatry, 66, 509 –516. doi: 10.1001/archgenpsychiatry.2009.19 Moustakas, C. (1994). Phenomenological research methods. Thousand Oaks, CA: Sage. Mulye, T. P., Park, M. J., Nelson, C. D., Adams, S. H., Irwin, C. E., & Brindis, C. D. (2009). Trends in adolescent and young adult health in the United States. Journal of Adolescent Health, 45, 8 –24. doi:10.1016/j.jadohealth.2009.03.013 Murphy, N., & Carbone, P. (2011). Parent-providercommunity partnerships: Optimizing outcomes for children with disabilities. Pediatrics, 128, 795– 802. doi:10.1542/peds.2011-1467 Myers, B. J., Mackintosh, V. H., & Goin-Kochel, R. P. (2009). “My greatest joy and my greatest heartache:” Parents’ own words on how having a child in the autism spectrum has affected their lives and their families’ lives. Research in Autism Spectrum Disorders, 3, 670 – 684. doi:10.1016/j .rasd.2009.01.004 Myers, S. M., & Johnson, C. P. (2007). Management of children with autism spectrum disorders. Pediatrics, 120, 1162–1182. doi:10.1542/peds.20072362 Orpinas, P., Home, A. M., Song, X., Reeves, P. M., & Hsieh, H.-L. (2013). Dating trajectories from middle to high school: Association with academic performance and drug use. Journal of Research on Adolescence, 23, 772–784. doi:10.1111/jora.12029 Phelps, K. W., McCammon, S. L., Wuensch, K. L., & Golden, J. A. (2009). Enrichment, stress, and growth from parenting an individual with an autism spectrum disorder. Journal of Intellectual and Developmental Disability, 34, 133–141. doi: 10.1080/13668250902845236 Phetrasuwan, S., & Miles, M. S. (2009). Parenting stress in mothers of children with autism spectrum disorders. Journal for Specialists in Pediatric Nursing, 14, 157–165. doi:10.1111/j.1744-6155 .2009.00188.x Pottie, C. G., Cohen, J., & Ingram, K. M. (2009). Parenting a child with autism: Contextual factors
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
HEALTH CARE NEEDS OF ADOLESCENTS WITH ASD
associated with enhanced daily parental mood. Journal of Pediatric Psychology, 34, 419 – 429. doi:10.1093/jpepsy/jsn094 Pouw, L. B., Rieffe, C., Stockmann, L., & Gadow, K. D. (2013). The link between emotion regulation, social functioning, and depression in boys with ASD. Research in Autism Spectrum Disorders, 7, 549 –556. doi:10.1016/j.rasd.2013.01.002 Rao, P. A., & Beidel, D. C. (2009). The impact of children with high-functioning autism on parental stress, sibling adjustment, and family functioning. Behavior Modification, 33, 437– 451. doi:10.1177/ 0145445509336427 Sandelowski, M. (1995). Focus on qualitative methods: Sample sizes in qualitative research. Research in Nursing & Health, 18, 179 –183. doi:10.1002/ nur.4770180211 South, M., Dana, J., White, S. E., & Crowley, M. J. (2011). Failure is not an option: Risk-taking is moderated by anxiety and also by cognitive ability in children and adolescents diagnosed with an autism spectrum disorder. Journal of Autism and Developmental Disorders, 41, 55– 65. doi: 10.1007/s10803-010-1021-z Storch, E. A., Sulkowski, M. L., Nadeau, J., Lewin, A. B., Arnold, E. B., Mutch, P. J., . . . Murphy, T. K. (2013). The phenomenology and clinical correlates of suicidal thoughts and behaviors in youth with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43, 2450 – 2459.
337
Strunk, J. A. (2009). School nurses’ knowledge of autism spectrum disorders. The Journal of School Nursing, 25, 445– 452. doi:10.1177/1059840 509348221 Thomas, K. C., Ellis, A. R., McLaurin, C., Daniels, J., & Morrissey, J. P. (2007). Access to care for autism-related services. Journal of Autism and Developmental Disorders, 37(10), 1902–1912. doi: 10.1007/s10803-006-0323-7 van Steensel, F. J., Bögels, S. M., & Perrin, S. (2011). Anxiety disorders in children and adolescents with autistic spectrum disorders: A meta-analysis. Clinical Child and Family Psychology Review, 14, 302–317. doi:10.1007/s10567-011-0097-0 Wachtel, K., & Carter, A. S. (2008). Reaction to diagnosis and parenting styles among mothers of children with ASDs. Autism, 12, 575–594. doi: 10.1177/1362361308094505 Waisman Center. (2008). Medical home services for autism spectrum disorders. Retrieved from http:// www.waisman.wisc.edu/cedd/guidelines/ Woodgate, R. L., Ateah, C., & Secco, L. (2008). Living in a world of our own: The experience of parents who have a child with autism. Qualitative Health Research, 18, 1075–1083. doi:10.1177/ 1049732308320112 Received July 18, 2012 Revision received January 29, 2014 Accepted May 16, 2014 䡲
