Autism comes to the hospital: The experiences of patients with autism spectrum disorder,their parents and health-care providers at two Canadian paediatric hospitals

Abstract

Youth with autism spectrum disorder are a vulnerable, often poorly understood patient group, who may experience periodic and chronic health challenges, in addition to their primary developmental social and communication problems. Developmental and behavioural challenges can complicate management of acute health-care needs. To date, there is an absence of empirical research exploring the hospital experiences of children and youth with autism spectrum disorder, their families and their health-care providers. Therefore, the purpose of this study was to understand these experiences in order to inform hospital-based care. A total of 42 participants were interviewed (youth with autism spectrum disorder, their parents and health-care providers) at one of two Canadian paediatric hospitals, representing 20 distinct cases of patients with autism spectrum disorder. Results from the qualitative analyses indicated that patients with autism spectrum disorder faced several challenges in the context of health-care delivery in the hospital setting, as did their families and health-care provider team. Problems identified included communication and sensory challenges, and the degree of flexibility of health-care providers and the hospital organization. Supportive health-care providers were those who acknowledged parents as experts, inquired about the requirements of patients with autism spectrum disorder and implemented strategies that accommodated the unique clinical presentation of the individual patient. These recommendations have wide-reaching utility for hospital and health-care practices involving this patient group.

Keywords

autism spectrum disorder health care hospital medical paediatric qualitative methods

Introduction

Autism spectrum disorder (ASD) is associated with health and developmental challenges that persist throughout the lifespan. The rate of known medical conditions among those with ASD is approximately 10% to 15%, with higher prevalence in individuals with lower cognitive abilities (Barton and Volkmar, 1998; Kielinen et al., 2004; Rutter et al., 1994). Medical conditions and disorders that have been identified in children with ASD include the following: epilepsy, hydrocephalus, foetal alcohol syndrome, cerebral palsy, hearing and vision impairments (Kielinen et al., 2004; Levy et al., 2010), gastrointestinal and feeding problems (Kuddo and Nelson, 2003), as well as sleep problems (Krakowiak et al., 2008). Furthermore, co-existing neurodevelopmental and behavioural conditions (Bryson et al., 2008) and psychiatric difficulties including anxiety (Myles et al., 2001), depression (Barnhill, 2001; Sterling et al., 2008) and obsessive compulsive disorder (Zandt et al., 2009) have been noted. In a recent epidemiological study, Ahmedani and Hock (2012) found that 66% of their sample of children with ASD had at least one lifetime comorbid psychiatric disorder. Together, these findings suggest that individuals with ASD may access a variety of health-care services and come into contact with various health-care professionals. It is therefore important to understand the experiences of patients with ASD who visit health-care facilities to address their multifaceted health-related needs.

As such, with a prevalence rate currently at 1 in 88 (Centers for Disease Control and Prevention, 2012), ASD presents major challenges to access and delivery of health services (Kogan et al., 2008). Parents of children with ASD have been more likely to describe their child’s health as ‘fair’ or ‘poor’ as opposed to ‘excellent’ compared to parents of children without ASD and also report that their children are more likely to use mental health, behavioural, occupational, physical or speech services and be taking medication long-term (Gurney et al., 2006). Gurney et al. (2006) found that children with ASD had significantly greater numbers of physician visits, non-emergency care, hospital care and hospital emergency care visits compared to children without ASD in the United States. A national survey of parents of children with ASD and comorbid psychiatric conditions revealed that parents perceived the health outcomes of children with ASD and comorbid psychiatric conditions as poorer than children with ASD without psychiatric comorbidities (Ahmedani and Hock, 2012). Surveys of health-care expenditures of families of children with ASD indicate greater expenditures on total health-care, total outpatient care, physician visits and prescription medicines (Barrett et al., 2012; Leslie and Martin, 2007; Liptak et al., 2006). The cost of ASD throughout the lifespan has been estimated at USD $3.2 million per capita, taking into account the impact of adult care and decreased productivity by individuals with ASD and their families (Ganz, 2007).

The needs of children and youth with ASD may be particularly acute in hospitals. In addition to being in an unfamiliar environment while ill, in pain, or experiencing distress, ASD-specific concerns may result from sensitivities to lights, sounds or odours common in medical settings, discomfort being touched by staff or instruments and distress from lack of predictability (Seid et al., 1997; Souders et al., 2002; Van Der Walt and Moran, 2001). The traditional hospital environment may not be equipped to appropriately address the needs of children with ASD (Gabriels et al., 2012). Scarpinato et al. (2010) outlined challenges and potential strategies that may be used in hospital settings when caring for patients with ASD. When appropriate plans are put into place that accommodate ASD symptoms, stresses associated with hospitalization may be reduced (Scarpinato et al., 2010). However, beyond the environment, health-care providers (HCPs) may not be routinely trained to respond to the unique presentation, behaviour and sensory and other needs of affected patients. As such, Pratt et al. (2012) described the implementation of an intake survey to support the needs of patients with ASD who were hospitalized. Informal feedback from HCPs and family members were positive in response to this pre-assessment project. It appears that acknowledging the unique challenges associated with ASD and providing ways to accommodate these needs might be helpful.

Practical recommendations and strategies exist on how to support the hospital needs of paediatric patients with ASD (Pratt et al., 2012; Scarpinato et al., 2010); however, an empirically based understanding of the experiences of children and youth with ASD and their parents within paediatric hospital settings is lacking, but vital, given the significant rise in the prevalence of ASDs noted in epidemiological reports. Furthermore, research is needed to understand health-care professionals’ experiences with this paediatric population. Physicians, nurses and other HCPs require an enhanced understanding of the needs of patients with ASD and their families, methods to accommodate their unique characteristics and improve their health-care experiences. A focus on promoting positive health-care experiences for families is important; as positive experiences have been associated with reduced stress and depression symptoms in caregivers (e.g. Mitchell and Hauser-Cram, 2008). Therefore, the purpose of this study was to understand the hospitalization experiences of children and youth with ASD, their families, and their HCPs with the objective of utilizing our findings to improve hospital care for children and youth with ASD.

Method

In this study, qualitative methodology was employed as it ‘seeks answers to questions that stress how social experience is created and given meaning’ (Denzin and Lincoln, 2000: 8). Interpretive description, a methodological framework commonly used for small-scale qualitative research of clinical phenomena, which focuses on understanding individuals’ experiences of health and illness grounded within the context of health care (Thorne et al., 2004), was the analytic framework for this study. The ultimate goal of interpretive description is to generate ideas that contribute to clinical practice.

Participants

Eligible families had a child diagnosed with ASD between 6 and 18 years old and hospitalized within the last 3 months at one of two Canadian paediatric hospitals. ASD diagnosis was confirmed by file review and parent report. HCPs who had been involved in each patient’s hospital care were asked to participate.

A total of 42 participants¹ were interviewed including 6 youth with ASD, 22 parents (19 mothers, 3 fathers and 2 sets of parents together) and 14 HCPs (6 nurses, 6 physicians, 1 speech-language pathologist (SLP) and 1 social worker). Hospital departments involved included gastroenterology, neurology, oncology, dentistry and metabolic genetics. In total, the hospitalization experiences of 20 paediatric patients (17 males) between ages 10 and 16 years (M = 11.9, standard deviation (SD) = 2.5) were described (Tables 1 and 2). While all youth of families volunteering for the study were invited to participate, those who did not participate did not have the verbal ability to engage in the interview and/or parents thought they could not be interviewed, even if offered accommodations.

Table 1.

Parent, HCP and child/youth participant characteristics.

Case (hospital site)	Parent	Health-care provider			Child/youth
	Role	HCP profession	Time in health-care field (years)	Number of patients with ASD	Age (years)	Gender	Interviewed?	SRS total score
1a	Mother	Physician	20+	>15	11	M	Y	90
2a	Mother	Nurse	11–19	10–15	16	F	Y	107
3a	Mother	Social Worker	1–5	1–5	11	M	Y	87
4a	Mother	Nurse	6–10	>15	12	M	N	79
5a	Mother	Physician	6–10	5–10	13	M	N	92
6a	Mother	Physician	1–5	5–10	15	M	Y	87
7a	Mother	Nurse	1–5	5–10	14	M	N	93
8a	Mother	Nurse	6–10	>15	11	M	N	78
9a	Mother	–	–	–	14	M	N	72
10a	Mother	Nurse	11–19	5–10	8	M	N	83
11a	Mother	–	–	–	7	M	N	99
12a	Mother	Physician	6–10	>15	12	M	N	69
13a	Mother	Nurse	6–10	5–10	10	F	Y	55
14a	Parents	Physician	11–19	>15	14	M	N	104
15a	Mother	Physician	20+	>15	9	M	N	145
16a	Mother	Physician	20+	>15	9	M	N	143
17b	Father	Physician	20	>15	15	M	N	83
18b	Mother	–	–	–	11	M	Y	67
19b	Parents	Physician	20+	>15	12	M	N	114
		SLP	20+	>15
20b	Mother	Physician	20	>15	13	F	N	114

HCP: health-care provider; Parents: mother + father together; SRS: Social Responsiveness Scale; ASD: autism spectrum disorder; SLP: speech-language pathologist.

Table 2.

Parent demographic characteristics.

Parent demographics (n = 20)^a
Age (years) (M ± SD)	45.0 ± 4.9
Number of children (M ± SD)	2.9 ± 2.3
Marital status (n, %)
Married	14 (72.7)
Common law	1 (4.5)
Divorced	3 (13.6)
Widowed	1 (4.5)
Single	1 (4.5)
Highest level education (n, %)
High school	2 (10)
Bachelors	6 (30)
College or university	8 (35)
Master’s	4 (20)
Primary income source (n, %)
Employment	12 (55)
Spouse/partner	6 (30)
Other	2 (10)

SD: standard deviation; M: mean; n: sample size

When both parents participated in the interview together, only mothers filled out the demographics forms.

Procedure

Purposeful sampling strategies were used to recruit participants. Strategies included study posters, advertisements on care-provider websites and word of mouth. Semi-structured interviews were composed of open-ended questions to elicit rich descriptions of their experiences (Charmaz, 2006). Questions were focused on hospital admission (e.g. parent: ‘What was the admission process like?’), hospital visit or stay (e.g. HCP: ‘What do you remember most about how the child experienced hospitalization?’), discharge (e.g. parent: ‘What was it like when you were told your child could go home?’) and advice on how to improve hospital experiences for youth with ASD (e.g. youth: ‘What do you think kids like you need when they are in the hospital?’). Interviews were audio-recorded and transcribed verbatim. Parents and HCPs completed brief demographic questionnaires. To enhance our understanding of the range of symptom severity in the represented youth, parents completed the Social Responsiveness Scale (SRS; Constantino and Gruber, 2005). The SRS is a brief, 65-item measure that is suitable for children and youth of ages 4 to 18. It is a sensitive and reliable screening tool for ASD, which identifies the presence and extent of autistic social impairment. Total T-scores of 60 to 75 indicate mild to moderate impairments, and T-scores of 76 or greater indicate severe impairments. All study protocols were reviewed and approved by each hospital’s ethics review board.

Data analysis

Interview data were entered into a qualitative data management and analysis software program (NVivo 9; QSR International, 2010). Themes were generated to illuminate participant experiences and meanings. All perspectives were highlighted and none were privileged. Discrepancies were examined through discussions with members of the research team. Following the development of initial themes, preliminary findings were shared with a small consultation group (n = 7) comprised of parents of youth with ASD, an individual with ASD and HCPs. The purpose of the consultation meeting was to ensure that our analysis captured the experiences of participants with a range of health-care experiences. Some of the participants in this group were new to the study, while others had participated in the original interviews.

To ensure rigour and methodological soundness in this study, trustworthiness was established (Creswell, 1998; Lincoln and Guba, 1985). This included prolonged engagement (members of the research team have considerable experience working with HCPs, children with ASD and their families), negative case analysis (consideration of inconsistent cases relative to emerging themes or theoretical observations were included), peer debriefing (numerous formal and informal discussions were held to examine ideas and possible preconceived notions among the investigation team and analyses of interviews), member checking (emerging themes were presented and reviewed by consultation group participants in order to explore the viability of emerging findings) and thick description (generated themes included rich descriptive accounts and quotes that presented contexts and circumstances of sampled participants, findings and interpretations).

Results

Challenges in the hospital setting

Participants discussed several challenges to hospital care for youth with ASD such as difficulties with communication, heightened sensory sensitivities and waiting/transitioning within the hospital.

Communication

Participants described challenges with respect to youth with ASD understanding language and expressing themselves, which encompasses a core problem of ASD. One youth stated, ‘I have trouble understanding what people say sometimes, because I have autism’ (Youth 1). Parents often discussed their children’s challenges with communication in the context of a high-stress hospital environment. One parent noted, ‘[Staff] keep saying “Sit in the seat”, he doesn’t understand … you may as well be speaking another language’ (Parent 8). Communication challenges associated with ASD (e.g. scripted language that may be difficult to interpret, limited expressive language or non-verbal communication only) may further complicate the hospital experience. Another parent described an instance when a HCP asked her child a question with the intent of finding out about nausea, and her son interpreted the question quite literally:

Every time [nurses were] saying, ‘Have you vomited?’ And he’s saying, ‘No, I haven’t’. [He didn’t tell them that] he’s been feeling nauseous … I said to [the nurses], ‘… You need to frame your questions differently. Because … he’ll just tell you what you asked him’. (Parent 7)

Parents and HCPs highlighted the difficulty of patients with ASD communicating their pain, and resulting problems faced by HCPs and parents interpreting the nature, location and level of their pain. Some patients were not able to express how they were feeling physically at all. A HCP described, for those who are ‘non-verbal, it’s very difficult to assess their needs’ (HCP 14). Similarly, a parent reflected, ‘…how frustrating it must be to be non-verbal and in pain’ (Parent 8). Both parents and HCPs acknowledged the challenges of understanding pain especially in patients with ASD: ‘… he may not express [pain] the same way as another patient’ (HCP 10), considering the possibility that pain may present differently across patients with ASD.

Sensory processing

Related to some of the challenges associated with communication of pain were problems with being inundated with sensory experiences at the hospital. Participants expressed difficulties across sensory experiences – touch, sound, taste, smell and sight. Participants acknowledged that hospitalization involves a great deal of touching, which may be especially difficult for some patients. A HCP stated, ‘We do a lot of poking around here … You don’t realize it until you’re working with someone with ASD that’s sensitive to touch, how much we touch’ (HCP 10). Auditory sensitivities were described by one youth as ‘Lots of beeping machines’ (Youth 1). When asked what this experience was like, he replied, ‘Well since I’m really sensitive to noise it was really hard.’ Taste was related to the dietary challenges reported. One parent commented on how difficult it has been to teach her son to eat vegetables and that gains that might appear to be trivial were viewed as a ‘huge improvement’, given that it has been ‘difficult for him to eat peas and probably the whole of umbrella of vegetables’ (Parent 1). Olfactory sensitivities also presented challenges. This youth with ASD described difficulties that were personally highly problematic:

… certain soaps, I won’t wear it on my body or sometimes like if the different soaps or some tissue or something in the chemical or something they put in there that makes it feel like I have ‘creepy crawlies’ over my skin. (Youth 1)

Challenges working with the health-care team

Parents referred to the challenges of having many HCPs in the child’s room at the same time. The presence of many staff could be perceived in a number of ways by the child, for example, as overwhelming or as a signal that a procedure might be imminent. One parent mentioned: ‘What would have been helpful: not speaking about [my child] in his room, at the foot of his bed … assuming that he’s not understanding it’s about him’ (Parent 9). Another parent described a similar experience with too many people in the room: ‘I think he thought that there was some sort of restraint going to happen and that did have to happen sometimes when he first [was] learning how to accept [the procedure]…’ (Parent 7). Parents acknowledged that health-care team consultations provided important learning opportunities for training health-care professionals; however, they acknowledged the potentially negative impact on the child of having too many people in the room.

Waiting/transitioning

Parents highlighted the problems with waiting and transitioning throughout the hospital: ‘It wasn’t that long, but for her it was like years of waiting’ (Parent 2). Another parent suggested decreasing waiting times for patients with ASD who may not be able to wait. Parents noted transitions in particular as difficult; one parent noted that her child’s ‘autism is most obvious when he has to face change or transitions’ (Parent 7). Another parent echoed this comment: ‘Going from room to room to room, I don’t think really works … put them in one room’ (Parent 11).

(In)flexibility

Participants described positive and negative experiences of flexibility: flexible and accommodating care for patients with ASD versus inflexibility of HCPs at an individual level and in the hospital and at a broader, systemic level. Positive experiences were exemplified when HCPs made appropriate accommodations and/or acknowledged the need to modify procedures and provide additional time for specific procedures. One health-care professional stated, ‘… there’s no point in [putting a stethoscope on the chest] if a child is screaming, and it’s not going to be an accurate recording, so I am not gonna stress the child out to get a blood pressure …’ (HCP 2). A parent described a positive experience when HCPs were flexible, allowing her son to bring in a large set of his electronic devices to the hospital:

[My child] said, ‘I have to bring my [electronics]!’ And I said, ‘You can’t bring your [electronics] to the hospital!’ And he said, ‘well, I’m gonna ask’. And when he asked, the nurse said, ‘Of course!’ You know, that took a lot of the stress out right there. (Parent 6)

Families who had negative experiences commented on staff inflexibility as well as the rigidity of the hospital. One parent stated, ‘… they wouldn’t book [my son] for the surgery because the doctor [didn’t want to] put him under sedation, so [they] ended up tackling him instead …’ (Parent 8). Regarding the broader systemic challenges, one HCP commented on the inflexible nature of acute care facilities:

… we give [patients with ASD] probably the antithesis of what they need … a hospital is a very inflexible place, it doesn’t adapt itself to people who are in it. So, I think that’s what children need, we’re just not that type of place or organization that serves these children well because, that’s not the way we work. (HCP 14)

Helpful approaches

Participants described ways in which the hospitalization experience was made manageable. HCPs deemed helpful were those who acknowledged parents as experts, inquired about the unique needs of patients with ASD and implemented strategies that catered to the unique needs of the individual patient.

Recognizing parent expertise

HCPs who recognized the critical role of parents and thus developed partnerships with them were instrumental in providing appropriate care to paediatric patients with ASD. One HCP commented on one parent’s support saying that she ‘has been such an amazing help with that, because she knows her son so well’ (HCP 10). Another HCP echoed this sentiment: ‘[These parents are] very helpful in telling me how to best care for their child; they know their child the best and, I very much, look for their expertise with their child’ (HCP 13).

Within this mutually engaging relationship, parents were often in the role of advocate throughout the hospitalization of their sons and daughters. Parents often initiated the discussion of their child’s diagnosis, special needs and sensitivities to HCPs during their child’s visits. One parent noted, ‘I find being open and honest, and letting [staff] know what works, what doesn’t work, giving them the key rundown really helps’ (HCP 18).

Participants viewed parents as the child’s translator. Parents provided a wealth of information on their children, particularly for those children who were not able to verbalize their feelings, wants and needs. Parents provided important information about a child’s ‘baseline’. One HCP mentioned the importance of having a good sense of a child’s ‘baseline’ to understand:

… who they are, on their typical day, and also who they are on their best days and their worst days … So, a child with autism … may come in looking really ill or really distraught, but that may not be too different from what they usually are. Or people may make assumptions that, oh, it shouldn’t be too different ‘cause they have whatever condition but in fact, it’s a huge change, ‘cause this is a child who interacts differently. (HCP 12)

Knowing the child and preparing

Participants recognized that understanding the unique needs of each patient with ASD is central to appropriately prepare the child for the hospital stay as well as coping with and handling specific medical procedures. One HCP referred to the suggestions made by parents: ‘I remember always saying, ‘Let’s do our yoga breathing’… when I spoke to parents, they had told me that they had done previous behavioural strategies with her and that’s what seems to help …’ (HCP 13)

Suggested systemic changes

Participants made several recommendations to improve the hospital experience of paediatric patients with ASD and their families. Among these suggestions were toolkits, improvements in communication between HCPs and staff education and training.

Resource kit

Participants expressed the value of having a formal resource that HCPs might refer to when caring for paediatric patients with ASD ‘to have at their disposal, to help them plan … and even to understand what are some of the issues for kids on the spectrum’ (Parent 17).

Given the diversity of needs and strengths of those diagnosed with ASD, preparation strategies would need to be adapted to each child’s unique needs. For example, a youth suggested creating a procedure-based, child-friendly storybook that would be used to prepare patients with ASD for standard procedures.

Better communication

Participants discussed the need for improvements in communication between HCPs when caring for patients with ASD. When communication did not flow between the members of the health-care team, parents experienced challenges with their children’s care. Brief communications were viewed as important for parents, who did not always want to repeat themselves upon meeting a new HCP. One parent described an example of when communication about her child’s ASD diagnosis began well, but this information was not communicated to a subsequent HCP:

… as soon as I said [my children] were on the spectrum…they were very attentive, and listened…My challenge came once they sent us back for an X-ray…there wasn’t obviously communication from the front end people…I was like ‘Okay, seriously did nobody just tell you what I just told them all. [My child] has autism, good luck getting him to lie down and stay still and whatever you need to do for your X-ray’. (Parent 15)

HCPs also described the need to communicate with and listen to families. A HCP suggested that staff ‘… need [to] trust in the parents’ (HCP 8).

Staff education and training

Improvements in staff knowledge of ASD and competence in caring for patients with ASD through professional development opportunities were described. Participants expressed the need for expertise in ASD throughout the hospital. For example, one HCP said, ‘There’s expertise [at this hospital for] dealing with many, many conditions. We don’t have one for autism’ (HCP 14). Other HCPs as well as parents echoed this perspective. In addition, it was noted that, ‘there’s a real level of discomfort and feeling that we’re not equipped to offer the care that these children and their families need’ (HCP 14). While some HCPs and parents wanted experts with specialized ASD training, others felt that existing departments (e.g. Child Life) were instrumental in providing needed support.

HCPs and parents expressed the need for additional training. One parent said that HCPs ‘need more training’ (Parents 19), and specifically, one HCP described the particular lack of training to work with children ‘on the severe end of the spectrum’ (HCP 12). On the other hand, some HCPs reported ample expertise in working with patients with ASD. One participant described various training experiences acquired over several years. However, the majority of HCPs did not endorse this perception. Other HCPs acknowledged some exposure to ASD as part of their training curricula, albeit brief. Many participants suggested that while they were comfortable with their current ASD knowledge, they would welcome additional training and continuing education opportunities.

Discussion

Together, the results from this study revealed challenges, helpful approaches and descriptions of the flexibility and inflexibility of staff at the hospital and as an institution. Suggestions for systemic changes that may improve the hospitalization experiences of paediatric patients with ASD and their families were also provided.

Both parents and HCPs expressed one of the most helpful and simplest approaches to providing appropriate care to paediatric patients with ASD: listening to parents. Parents were viewed as their child’s translator, particularly for children and youth with limited expressive communication. These findings were consistent with Owley (2004) and Vaz (2010) who described parents as key interpreters for their children with ASD. A simple conversation with parents at the outset of a hospital visit may improve the chances of a positive hospital experience (Vaz, 2010). Parent involvement throughout hospitalization is critical (MacKenzie et al., 2013; Owley, 2004).

A central underpinning of appropriate care is that it is individualized. While Scarpinato et al. (2010) suggested that children with ASD prefer quiet, low-stimulating environments and settings in which health-care professionals use concrete and simple language, these suggestions may not be appropriate for all patients with ASD. Therefore, environmental stimulation and methods of communication will likely need to be tailored for the individual patient. For instance, some paediatric patients represented in our study preferred having advance knowledge and details about procedures and other events, and favoured ideas such as using picture sequences and other preparatory strategies, but this was not preferred by everyone. Some participants preferred immediate strategies such as sedation whereas others felt that preparatory discussions, in lieu of sedation, were best. MacKenzie et al. (2013) highlighted the need for HCPs to treat the whole child in the hospital setting by paying attention to emotional and somatic aetiologies. Consistent with our findings, MacKenzie et al. (2013) recommended that open dialogue with parents may provide important insights into possible aetiologies and behaviour management strategies if needed.

Parents and HCPs described the need for HCPs to possess knowledge about ASD and relevant training experiences. Shah (2001) surveyed a variety of health-care professionals and trainees and found that while medical students understood the core symptoms of ASD, they demonstrated less understanding of causes, cognitive profiles, treatment and prognosis compared to other professionals. As such, up-to-date ASD training for trainees and current professionals is critical (Browne, 2006; Heidgerken et al., 2005), as well as an understanding of how ASD symptoms may present in a stressful hospital environment (Vaz, 2010).

Specialized hospital-based staff training opportunities may be particularly helpful. One example might be to create accessible training materials (information and resources) on the organization’s intranet (Johnson et al., 2012; Vaz, 2010). Ling et al. (2010) reported parents’ potential embarrassment when attempting to explain their child’s ASD symptoms to those who may not understand. This is also important, given that Heidgerken et al. (2005) found that many HCPs continue to view children with ASD as ‘deliberately negativistic and noncompliant’ (p. 326) even though current research suggests underlying neurological and genetic factors related to the aetiology of ASD. Health-care professionals who display sensitivity to and understanding of the special needs of patients with ASD may help parents to feel less stigma associated with their child’s disability. While specialized training is valuable, it is also important to recognize already existing expertise within the hospital. Several participants were very pleased with Child Life Specialists, who assisted with difficult procedures and helped youth pass the time. At a minimum, what is needed from a staff training perspective is education in the areas of neurodiversity as well as explicit training on talking to parents to identify the child’s special needs.

As indicated by our study participants, communication challenges may make assessing pain and providing appropriate medical treatments difficult. Possible recommendations include the following: utilizing communication tools, adapting care around patients’ restricted interests and considering the impact of the need for routine on-treatment plans (Scarpinato et al., 2010). When HCPs are aware of the communication needs of the patient along with a well-developed care plan before the hospitalization, positive experiences have been noted (Pratt et al., 2012). Communication challenges may present differently across patients with ASD, and therefore, it is important to communicate with parents to determine the most appropriate way of communicating with the child whether it is through augmentative communication devices, picture systems, verbal expression or other methods.

Our findings revealed that whenever possible, advanced preparation of the youth with ASD would be helpful. Blake’s (2010) consideration of family-centred care for children with developmental disabilities included an individualized assessment of the child prior to the hospital visit. This suggests the importance of pre-admission planning and involving the family to support and inform HCPs to address these needs (Pratt et al., 2012). Participants reported successful hospital experiences when proactive rather than reactive plans were made. Prevention is preferred over responding once challenging behaviours occur. Learning about hospital care relative to ASD is important for trainees, yet standard/procedural tasks and/or typical training processes (e.g. group learning) are not frequently conducted with persons with ASD. Careful balance is needed to build capacity of trainees relative to ASD, yet not at the expense of overwhelming the senses of patients with ASD. Ideally, improved health-care experiences for all result when staff are educated about ASD, meet with parents ahead of time (when possible) or listen to parents at the time of first meeting, hear about the child’s needs, strengths, coping styles and communication mechanisms, and then co-create a plan with the family.

Because our study was conducted in two specialized Canadian acute health-care settings, our patient population may not be representative of patient experiences in other settings. Of our 20 distinctly represented patients with ASD, 17 had SRS scores in the severe range. It is possible that those with less severe social impairments may have different experiences; however, the steps we took to ensure study rigour (e.g. member checking, negative case analysis) suggest that our themes appropriately captured the hospital experiences of those who were represented in our study. In addition, HCPs who participated may have only done so because they perceived the hospital experience as successful. Particularly for our cases representing negative experiences, there were challenges with staff recruitment efforts such that HCPs who were approached declined participation. Furthermore, there was limited youth participation even though efforts were made by investigators to accommodate participation. Finally, our sample comprised of parents who disclosed their child’s diagnosis both in the hospital encounter and in study participation. It is unclear whether the experiences described in our study are representative of the experiences of families in which parents do not disclose their child’s diagnosis.

Conclusion

Participants provided a wealth of information in describing hospital experiences. A resounding finding was the importance of listening to parents in order to plan and provide optimal hospital care given the unique needs of their children. The hospital may be especially overwhelming to paediatric patients with ASD and their families. It is important for HCPs to value and utilize the expertise that these parents bring to that care, particularly given family vulnerability and heightened risk for a negative hospital experience. Examination of the effectiveness of the recommended strategies to promote positive hospital experiences is warranted.

Footnotes

Funding

This research was funded by a New Investigator Grant from SickKids Foundation.

Notes

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