Parent and Provider Perspectives on Procedural Care for Children with Autism Spectrum Disorders
Abstract
Objective Children with autism spectrum disorders (CWASDs) have more difficulty tolerating hospital procedures than many other children. The aim of this study was to identify parent and provider perspectives on barriers and facilitators to procedural care for CWASDs. Methods Semistructured interviews were conducted with medical staff and parents of CWASDs. Those parents whose child with autism required a procedure in a tertiary care sedation unit and those whose child was enrolled in autismMatch (a research registry for individuals with autism) were recruited. Staff providing direct patient care in the tertiary care sedation unit were recruited. Participants were asked open-ended questions about factors contributing to or interfering with successful completion of medical procedures for CWASDs. Interviews were audio-recorded, transcribed verbatim, coded, and analyzed using modified grounded theory techniques. Results Twenty mothers and 20 medical staff members were interviewed. Participants described 2 domains essential to care of CWASDs but in which barriers existed: (1) productive interactions between providers and families, largely dependent on advanced preparation and (2) modifications to healthcare organization and delivery in the areas of patient flow and clinical environment. Individualized care is essential to quality care in both domains. Conclusions Children with autism spectrum disorders require individualized interventions to maximize the quality of procedural care…
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Parents raised concerns regarding the lack of thoughtful planning and early identification.
“Parents raised concerns regarding the lack of thoughtful planning and early identification:”
From A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children (2021) · cites this paper as Davignon et al., 2014
Five studies gave an indicator of parents' educational levels, with all from higher educational groups.
“Five studies gave an indica -tor of parents' educational levels, with all from higher educational groups (Davignon et al., 2014; Duker et al., 2017; Levy et al., 2016; Muskat et al., 2016; Nicholas et al., 2016).”
From A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children (2021) · cites this paper as Davignon et al., 2014
Parents articulated stress related to consultation bookings and waiting times.
“Parents articulated stress related to consultation bookings and waiting times.”
From A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children (2021) · cites this paper as Davignon et al., 2014
HCPs need to provide information to families regarding the likely procedures to be undertaken.
“HCPs need to provide information to families regarding the likely procedures to be undertaken:”
From A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children (2021) · cites this paper as Davignon et al., 2014
Six studies used an indicator of complexity of the autism condition, with the majority (n=4) loosely classified as 'medium to high functioning'.
“Six studies used an indicator of complexity of the autism condition (Breik et al., 2018; Brown & Brown, 2014; Davignon et al., 2014; Duker et al., 2017; Nicholas et al., 2016; Strunk et al., 2014; Thomas et al., 2018), with the majority ( n = 4) of these loosely classified as 'medium to high functioning' (Breik et al., 2018; Brown & Brown, 2014; Davignon et al., 2014; Strunk et al.,”
From A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children (2021) · cites this paper as Davignon et al., 2014
Advanced preparation of both family and practitioners is needed in relation to a child's needs.
“Advanced preparation of both family and practitioners is needed in relation to a child's needs (Davignon et al., 2014).”
From A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children (2021) · cites this paper as Davignon et al., 2014
Longer consultation sessions were recommended so that visits can happen at the pace of the child with autism, without rushing, and allow extra time for the HPC to be able to explain the visit and procedures.
“Longer consultation sessions so that visits can happen at the pace of the child with autism, without rushing (Davignon et al., 2014), and allow extra time for the HPC to be able to explain the visit and procedures (Davignon et al., 2014).”
From A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children (2021) · cites this paper as Davignon et al., 2014
Parents recommended providing opportunity for parents to be able to problem solve with HCPs and suggest modifications, and preparing possible coping strategies, and for parents to bring along items to occupy and distract the child.
“Provide opportunity for parents to be able to problem solve with HCPs and suggest modifications, and preparing possible coping strategies. Also for parents to bring along items to occupy and distract the child (Davignon et al., 2014).”
From A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children (2021) · cites this paper as Davignon et al., 2014
Morning appointments were advocated for, to decrease fasting and wait times, thus reducing tensions associated with the visit.
“Morning appointments were advocated for, to decrease fasting and wait times, thus reducing tensions associated with the visit (Davignon et al., 2014).”
From A meta‐synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children (2021) · cites this paper as Davignon et al., 2014
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- Authors
- Davignon, M. N., Friedlaender, E., Cronholm, P. F., Paciotti, B., & Levy, S. E.
- Affiliations
- Children's Hospital of Philadelphia (US)
- University of Pennsylvania (US)
- Corresponding author
- Davignon, Meghan N.
- Cronholm, Peter F.
- Levy, Susan E.
- Venue
- Journal of Developmental & Behavioral Pediatrics
- Published
- 2014-04
- Volume
- 35
- Issue
- 3
- Pages
- 207-215
- ISSN
- 0196-206X (ISSN-L)
- OpenAlex
- W2322901653
- Cited by
- 66
- References
- 22
- Citations by year
- 2026: 1 · 2025: 7 · 2024: 10 · 2023: 6 · 2022: 6 · 2021: 9 · 2020: 2 · 2019: 3 · 2018: 10 · 2017: 4 · 2016: 5 · 2015: 3
- FWCI
- 2.23
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Developmental & Behavioral Pediatrics (publishedVersion)
- PubMed (publishedVersion)
- Funders
- U.S. Public Health Service (T73MC00051, T77MC00012)
- Topics
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Pediatric Pain Management Techniques
- Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
- Keywords
- autism spectrum disorder, procedural sedation, parental attitudes, provider perspectives, barriers and facilitators, patient flow, individualized care
- MeSH terms
- Adolescent, Adult, Child, Child Development Disorders, Pervasive, Child, Preschool, Female, Humans, Interviews as Topic, Male, Medical Staff, Hospital, Middle Aged, Parents, Conscious Sedation, Procedural Sedation
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
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