Skip to main content
Top
Published in: Dysphagia 3/2021

01-06-2021 | Care | Original Article

“It Takes a Whole Day, Even Though It’s a One-Hour Appointment!” Factors Impacting Access to Pediatric Feeding Services

Authors: Madeline Raatz, Elizabeth C. Ward, Jeanne Marshall, Clifford Afoakwah, Joshua Byrnes

Published in: Dysphagia | Issue 3/2021

Login to get access

Abstract

Feeding disorders can have a significant impact on children and their families. Access to supportive multidisciplinary care is central to improving outcomes; however, there are numerous factors that can impact service access. Using a mixed methods design, the current study examined parents’ experiences and satisfaction with accessing a state-wide government-funded tertiary pediatric feeding clinic in Australia. Parents of 37 children (aged 7 weeks to 17 years) participated in the study, residing 6–1435 km from the service. Each completed questionnaires regarding satisfaction (Client Satisfaction Questionnaire-8 Child Services) and costs, and participated in a semi-structured interview. Costs were measured as both direct (e.g., accommodation) and indirect (measured as lost productivity) associated with accessing their feeding appointment. Results revealed parents were highly satisfied with their child’s feeding services, but considerable impacts were reported in accessing the service with 85% of the group noting that attending their child’s appointment took at least half a day. The total cost per appointment ranged between $53 and $508 Australian dollars. Interviews identified three main barrier themes: distance and travel, impact on daily activities (e.g., work, school), and parent perception of inaccurate representation of their child’s feeding skills within the clinic environment. The issues raised were also tempered by an overarching theme of parental willingness to do “whatever was needed” to meet their child’s needs, regardless of these barriers. Service providers should be cognizant of the factors that impact access for families and consider alternative service-delivery models where appropriate to help reduce family burden associated with accessing necessary care.
Literature
2.
go back to reference Arvedson JC. Assessment of pediatric dysphagia and feeding disorders: clinical and instrumental approaches. Dev Disabil Res Rev. 2008;14:118–27.CrossRef Arvedson JC. Assessment of pediatric dysphagia and feeding disorders: clinical and instrumental approaches. Dev Disabil Res Rev. 2008;14:118–27.CrossRef
12.
go back to reference Simione M, Dartley A, Cooper-Vince C et al (2020) Family-centered outcomes that matter most to parents: a pediatric feeding disorders qualitative study. J Pediatr Gastroenetrology Nutr Simione M, Dartley A, Cooper-Vince C et al (2020) Family-centered outcomes that matter most to parents: a pediatric feeding disorders qualitative study. J Pediatr Gastroenetrology Nutr
15.
go back to reference Ashton L, May J, Brook T, Clarke K (2013) Multidisciplinary therapy services for children with feeding disorders in country South Australia. Paper presented at the 12th National Rural Health Conference, Adelaide, Australia, 7–10 April 2013 Ashton L, May J, Brook T, Clarke K (2013) Multidisciplinary therapy services for children with feeding disorders in country South Australia. Paper presented at the 12th National Rural Health Conference, Adelaide, Australia, 7–10 April 2013
16.
go back to reference Burgess A, Purdy S, Jackson B. Allied health professionals’ perspectives of working with dysphagia in a rural paediatric team. New Zeal Med Assoc. 2016;129:87–9. Burgess A, Purdy S, Jackson B. Allied health professionals’ perspectives of working with dysphagia in a rural paediatric team. New Zeal Med Assoc. 2016;129:87–9.
17.
go back to reference O’Donoghue C, Dean-Claytor A. Training and self-reported confidence for dysphagia management among speech-language pathologists in the schools. Lang Speech Hear Serv Sch. 2008;39:192–8.CrossRef O’Donoghue C, Dean-Claytor A. Training and self-reported confidence for dysphagia management among speech-language pathologists in the schools. Lang Speech Hear Serv Sch. 2008;39:192–8.CrossRef
26.
go back to reference Estrem HH, Pados BF, Thoyre S, et al. Concept of pediatric feeding problems from the parent perspective. Am J Matern Nurs. 2016;41:212–20.CrossRef Estrem HH, Pados BF, Thoyre S, et al. Concept of pediatric feeding problems from the parent perspective. Am J Matern Nurs. 2016;41:212–20.CrossRef
30.
go back to reference Rodger S, Franklin L. Parents’ perspectives on feeding medically compromised children: implications for occupational therapy. Aust Occup Ther J. 2003;50:137–47.CrossRef Rodger S, Franklin L. Parents’ perspectives on feeding medically compromised children: implications for occupational therapy. Aust Occup Ther J. 2003;50:137–47.CrossRef
33.
go back to reference Dodrill P. Functional Oral Intake Scale - Suckle Feeds and Transitional Feeds. In: Groher ME, Crary MA, editors. Dysphagia: Clinical Management in Adults and Children. 2nd ed. Missouri: Elsevier; 2016. p. 320. Dodrill P. Functional Oral Intake Scale - Suckle Feeds and Transitional Feeds. In: Groher ME, Crary MA, editors. Dysphagia: Clinical Management in Adults and Children. 2nd ed. Missouri: Elsevier; 2016. p. 320.
37.
go back to reference Attkisson, Clifford, C. (2014) Client Satisfaction Questionnaire -8 Child Services (Parent Rated). Chicago, IL: Tamalpais Matrix Systems, LLC. https://www.CSQscales.com. Accessed 13 November 2017 Attkisson, Clifford, C. (2014) Client Satisfaction Questionnaire -8 Child Services (Parent Rated). Chicago, IL: Tamalpais Matrix Systems, LLC. https://​www.​CSQscales.​com. Accessed 13 November 2017
38.
go back to reference Attkisson C, Greenfield T. The Client Satisfaction questionnaire (CSQ) Scales and the Service Satisfaction Scales-30 (SSS-30). In: Sederer LL, Dickey B, editors. Outcomes Assessment in Clinical Practice. Baltimore, MD: Williams & Wilkins; 1996. p. 120–127. Attkisson C, Greenfield T. The Client Satisfaction questionnaire (CSQ) Scales and the Service Satisfaction Scales-30 (SSS-30). In: Sederer LL, Dickey B, editors. Outcomes Assessment in Clinical Practice. Baltimore, MD: Williams & Wilkins; 1996. p. 120–127.
42.
go back to reference Crosland P, Ananthapavan J, Davison J, et al. The economic cost of preventable disease in Australia: a systematic review of estimates and methods. Aust N Z J Public Health. 2019;43:484–95.CrossRef Crosland P, Ananthapavan J, Davison J, et al. The economic cost of preventable disease in Australia: a systematic review of estimates and methods. Aust N Z J Public Health. 2019;43:484–95.CrossRef
49.
go back to reference Patton MQ. Qualitative research and evaluation methods. 3rd ed. California: Sage Publications; 2002. Patton MQ. Qualitative research and evaluation methods. 3rd ed. California: Sage Publications; 2002.
54.
go back to reference Clawson B, Selden M, Lacks M, et al. Complex pediatric feeding disorders: using teleconferencing technology to improve access to a treatment program. Pediatr Nurs. 2008;34:213–6.PubMed Clawson B, Selden M, Lacks M, et al. Complex pediatric feeding disorders: using teleconferencing technology to improve access to a treatment program. Pediatr Nurs. 2008;34:213–6.PubMed
Metadata
Title
“It Takes a Whole Day, Even Though It’s a One-Hour Appointment!” Factors Impacting Access to Pediatric Feeding Services
Authors
Madeline Raatz
Elizabeth C. Ward
Jeanne Marshall
Clifford Afoakwah
Joshua Byrnes
Publication date
01-06-2021
Publisher
Springer US
Keyword
Care
Published in
Dysphagia / Issue 3/2021
Print ISSN: 0179-051X
Electronic ISSN: 1432-0460
DOI
https://doi.org/10.1007/s00455-020-10152-9

Other articles of this Issue 3/2021

Dysphagia 3/2021 Go to the issue