Advertisement

Dysphagia

, Volume 29, Issue 6, pp 671–677 | Cite as

Impact of Children’s Feeding/Swallowing Problems: Validation of a New Caregiver Instrument

  • Maureen A. Lefton-GreifEmail author
  • Sande O. Okelo
  • Jennifer M. Wright
  • Joseph M. Collaco
  • Sharon A. McGrath-Morrow
  • Michelle N. Eakin
Original Article

Abstract

The impact of caring for children with deglutition disorders is poorly understood and tools to measure the unique concerns of these caregivers are lacking. The aims of this investigation were to develop and validate The Feeding/Swallowing Impact Survey (FS-IS) as an instrument designed to measure and improve understanding of caregiver issues. Demographic, economic, and dysphagic data were provided by the primary caregivers of 164 children (median age: 14 months, male: 78, female: 86) presenting for initial outpatient feeding/swallowing evaluations. Caregivers completed the PEDS-QL™ Family Impact Module (PEDS-QL™ FIM) and the FS-IS. A principal component analysis was conducted on the FS-IS to identify appropriate subscales. Concurrent validity was assessed by examining correlations between the FS-IS and PEDS-QL™ FIM. Caring for children with feeding/swallowing problems adversely impacted the Health-Related Quality of Life (HRQoL) of their caregivers. The FS-IS had a strong 3-factor solution to indicate 3 subscales: Daily Activities, Worry, and Feeding Difficulties. All three subscales and total score of the FS-IS correlated with PEDS-QL™ FIM. The FS-IS was validated as an instrument that may help clinicians detect specific factors that influence caregiver HRQoL, identify caregivers who might benefit from additional support, and ultimately improve the care of their children with feeding/swallowing disorders.

Keywords

Deglutition Deglutition disorders Dysphagia Child Pediatric Health-related quality of life Caregiver experiences 

Notes

Acknowledgements

The authors wish to thank the families who participated in the Johns Hopkins Pediatric Pulmonary Registry and the research assistants, Jillian Andrews and Lyndsey Marshall, who interacted with the families and compiled their data. This work was partially supported by the National Institutes of Health grants NHLBI HL089410 and NIDCD 5R01DC011290-03. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Conflict of interest

All authors disclose that they have no financial interests in the subject of this manuscript.

Supplementary material

455_2014_9560_MOESM1_ESM.doc (50 kb)
Supplementary material 1 (DOC 50 kb)

References

  1. 1.
    Burklow KA, Phelps AN, Schultz JR, McConnell K, Rudolph C. Classifying complex pediatric feeding disorders. J Pediatr Gastroenterol Nutr. 1998;27(2):143–7.PubMedCrossRefGoogle Scholar
  2. 2.
    Newman LA, Keckley C, Petersen MC, Hamner A. Swallowing function and medical diagnoses in infants suspected of Dysphagia. Pediatrics. 2001;108(6):E106.PubMedCrossRefGoogle Scholar
  3. 3.
    Lefton-Greif MA. Pediatric dysphagia. Phys Med Rehabil Clin N Am. 2008;19(4):837–51 ix.PubMedCrossRefGoogle Scholar
  4. 4.
    Ackerman VL. Bronchopulmonary Dysplasia. In: Loughlin G, editor. Respiratory Disease in Children: Diagnosis and Management. Baltimore: Williams and Wilkins; 1994. p. 383–94.Google Scholar
  5. 5.
    Loughlin GM. Respiratory consequences of dysfunctional swallowing and aspiration. Dysphagia. 1989;3(3):126–30.PubMedCrossRefGoogle Scholar
  6. 6.
    Linscheid TR. Behavioral treatments for pediatric feeding disorders. Behav Modif. 2006;30(1):6–23.PubMedCrossRefGoogle Scholar
  7. 7.
    Tawfik R, Dickson A, Clarke M, Thomas AG. Caregivers’ perceptions following gastrostomy in severely disabled children with feeding problems. Dev Med Child Neurol. 1997;39(11):746–51.PubMedGoogle Scholar
  8. 8.
    Nair RH, Kesavachandran C, Shashidhar S. Spirometric impairments in undernourished children. Indian J Physiol Pharmacol. 1999;43(4):467–73.PubMedGoogle Scholar
  9. 9.
    Abrams SA. Chronic pulmonary insufficiency in children and its effects on growth and development. J Nutr. 2001;131(3):9385–941.Google Scholar
  10. 10.
    Redle EE (2007) The Pediatric Feeding and Swallowing Disorders Family Impact [dissertation]. University of Cincinnati, pp 1–264.Google Scholar
  11. 11.
    Hewetson R, Singh S. The lived experience of mothers of children with chronic feeding and/or swallowing difficulties. Dysphagia. 2009;24(3):322–32.PubMedCrossRefGoogle Scholar
  12. 12.
    Pak L, Allen P. The impact of maternal depression on children with asthma. Pediatr Nurs. 2012;38(1):11–30.PubMedGoogle Scholar
  13. 13.
    Yagc-Kupeli B, Akyuz C, Kupeli S, Buyukpamukcu M. Health-related quality of life in pediatric cancer survivors: a multifactorial assessment including parental factors. J Pediatr Hematol Oncol. 2012;34(3):194–9.CrossRefGoogle Scholar
  14. 14.
    Colodny N. Validation of the Caregiver Mealtime and Dysphagia Questionnaire (CMDQ). Dysphagia. 2008;23(1):47–58.PubMedCrossRefGoogle Scholar
  15. 15.
    FDA. Guidance for Industry: Patient-reported outcome measures: Use in medical product development to support labeling claims. Rockville: Center for Drug Evaluation and Research, Food and Drug Administration; 2006.Google Scholar
  16. 16.
    van Exel J, Bobinac A, Koopmanschap M, Brouwer W. The invisible hands made visible: recognizing the value of informal care in healthcare decision-making. Expert Rev Pharmacoecon Outcomes Res. 2008;8(6):557–61.PubMedCrossRefGoogle Scholar
  17. 17.
    Mahant S, Peterson R, Campbell M, MacGregor DL, Friedman JN. Reducing inappropriate hospital use on a general pediatric inpatient unit. Pediatrics. 2008;121(5):e1068–73.PubMedCrossRefGoogle Scholar
  18. 18.
    Loonen HJ, Derkx BH, Otley AR. Measuring health-related quality of life of pediatric patients. J Pediatr Gastroenterol Nutr. 2001;32(5):523–6.PubMedCrossRefGoogle Scholar
  19. 19.
    Davis SE, Hynan LS, Limbers CA, Andersen CM, Greene MC, Varni JW, Iannaccone ST. The PedsQL in pediatric patients with Duchenne muscular dystrophy: feasibility, reliability, and validity of the Pediatric Quality of Life Inventory Neuromuscular Module and Generic Core Scales. J Clin Neuromuscul Dis. 2010;11(3):97–109.PubMedCrossRefGoogle Scholar
  20. 20.
    Uzark K, Griffin L, Rodriguez R, Zamberlan M, Murphy P, Nasman C, Dupuis J, Rodgers S, Limbers CA, Varni JW. Quality of life in pediatric heart transplant recipients: a comparison with children with and without heart disease. J Heart Lung Transplant. 2012;31(6):571–8.PubMedCrossRefGoogle Scholar
  21. 21.
    Hatzmann J, Heymans HSA, Carbonell A, van Praag BMS, Grootenhuis MA. Hidden consequences of success in pediatrics: parental health-related quality of life—results from the care project. Pediatrics. 2008;122(5):e1030–8.PubMedCrossRefGoogle Scholar
  22. 22.
    Davis E, Shelly A, Waters E, Boyd R, Cook K, Davern M, Reddihough D. The impact of caring for a child with cerebral palsy: quality of life for mothers and fathers. Child Care Health Dev. 2010;36(1):63–73.PubMedCrossRefGoogle Scholar
  23. 23.
    Spuijbroek AT, Oostenbrink R, Landgraf JM, Rietveld E, de Goede-Bolder A, van Beeck EF, van Baar M, Raat H, Moll HA. Health-related quality of life in preschool children in five health conditions. Qual Life Res. 2011;20(5):779–86.PubMedCentralPubMedCrossRefGoogle Scholar
  24. 24.
    Mesman GR, Kuo DZ, Carroll JL, Ward WL The Impact of Technology Dependence on Children and Their Families. J Pediatr Health Care. 2012;0.Google Scholar
  25. 25.
    Rouse L, Herrington P, Assey J, Baker R, Golden S. Feeding problems, gastrostomy and families: a qualitative pilot study. Br J Lear Disabil. 2002;30(3):122–8.CrossRefGoogle Scholar
  26. 26.
    Kuo DZ, Berry J, Casey PH. A national profile of caregiver challenges among more medically complex children with special health care needs. Arch Pediatr Adolesc Med. 2011;165(11):1020–6.PubMedCentralPubMedCrossRefGoogle Scholar
  27. 27.
    Kim J, Keininger DL, Becker S, Crawley JA. Simultaneous development of the Pediatric GERD Caregiver Impact Questionnaire (PGCIQ) in American English and American Spanish. Health Qual Life Outcomes. 2005;3:5.PubMedCentralPubMedCrossRefGoogle Scholar
  28. 28.
    Field D, Garland M, Williams K. Correlates of specific childhood feeding problems. J Paediatr Child Health. 2003;39(4):299–304.PubMedCrossRefGoogle Scholar
  29. 29.
    Rommel N, De Meyer AM, Feenstra L, Veereman-Wauters G. The complexity of feeding problems in 700 infants and young children presenting to a tertiary care institution. J Pediatr Gastroenterol Nutr. 2003;37(1):75–84.PubMedCrossRefGoogle Scholar
  30. 30.
    Reilly S, Skuse D, Poblete X. Prevalence of feeding problems and oral motor dysfunction in children with cerebral palsy: a community survey. J Pediatr. 1996;129(6):877–82.PubMedCrossRefGoogle Scholar
  31. 31.
    Burklow KA, McGrath AM, Valerius KS, Rudolph C. Relationship between feeding difficulties, medical complexity, and gestational age. Nutr Clin Pract. 2002;17(6):373–8.PubMedCrossRefGoogle Scholar
  32. 32.
    Hawdon JM, Beauregard N, Slattery J, Kennedy G. Identification of neonates at risk of developing feeding problems in infancy. Dev Med Child Neurol. 2000;42(4):235–9.PubMedCrossRefGoogle Scholar
  33. 33.
    Ray LD. Parenting and childhood chronicity: making visible the invisible work. J Pediatr Nurs. 2002;17(6):424–38.PubMedCrossRefGoogle Scholar
  34. 34.
    Lefton-Greif MA, Carroll JL, Loughlin GM. Long-term follow-up of oropharyngeal dysphagia in children without apparent risk factors. Pediatr Pulmonol. 2006;41(11):1040–8.PubMedCrossRefGoogle Scholar
  35. 35.
    Smeets SM, van Heugten CM, Geboers JF, Visser-Meily JM, Schepers VP. Respite care after acquired brain injury: the well-being of caregivers and patients. Arch Phys Med Rehabil. 2012;93(5):834–41.PubMedCrossRefGoogle Scholar
  36. 36.
    Cameron JI, Herridge MS, Tansey CM, McAndrews MP, Cheung AM. Well-being in informal caregivers of survivors of acute respiratory distress syndrome. Crit Care Med. 2006;34(1):81–6.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2014

Authors and Affiliations

  • Maureen A. Lefton-Greif
    • 1
    • 2
    • 3
    Email author
  • Sande O. Okelo
    • 4
  • Jennifer M. Wright
    • 1
  • Joseph M. Collaco
    • 1
  • Sharon A. McGrath-Morrow
    • 1
  • Michelle N. Eakin
    • 5
  1. 1.Department of PediatricsJohns Hopkins University School of MedicineBaltimoreUSA
  2. 2.Department of Otolaryngology-Head and Neck SurgeryJohns Hopkins University School of MedicineBaltimoreUSA
  3. 3.Department of Physical Medicine and RehabilitationJohns Hopkins University School of MedicineBaltimoreUSA
  4. 4.Department of PediatricsMattel Children’s Hospital UCLA, The David Geffen School of Medicine at UCLALos AngelesUSA
  5. 5.Division of Pulmonary and Critical Care MedicineJohns Hopkins Adherence Research CenterBaltimoreUSA

Personalised recommendations