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The Lived Experience of Mothers of Children with Chronic Feeding and/or Swallowing Difficulties

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Abstract

The purpose of this phenomenologic study was to describe the lived experiences of seven mothers who were providing home-based care for their children with feeding and/or swallowing difficulties. Data were collected using semistructured interviews and were analysed as per Colaizzi’s method of inductive reduction. Results suggest that the mothers’ experiences can be understood as two continuing journeys that were not mutually exclusive. The first, “Deconstruction: A journey of loss and disempowerment,” comprised three essences: (1) losing the mother dream, (2) everything changes: living life on the margins, and (3) disempowered: from mother to onlooker. The second journey was “Reconstruction: Getting through the brokenness” with the essences of (4) letting go of the dream and valuing the real, (5) self-empowered: becoming the enabler, (6) facilitating the journey, and (7) the continuing journey: negotiating balance. The phenomenon of being the mother of a child with chronic feeding and/or swallowing difficulties continued to be a transformative experience in which personal growth emerged along with chronic sorrow and periodic resurgence of struggle and loss. Implications call for healthcare professionals to incorporate maternal meanings and needs in providing appropriate family-focused intervention.

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References

  1. Darrow DH, Harley CM. Evaluation of swallowing disorders in children. Otolaryngol Clin North Am. 1998;31:405–18. doi:10.1016/S0030-6665(05)70061-X.

    Article  PubMed  CAS  Google Scholar 

  2. Garro A, Thurman SK, Kerwin ME, Ducette JP. Parent/caregiver stress during pediatric hospitalization for chronic feeding problems. J Pediatr Nurs. 2005;20:268–75. doi:10.1016/j.pedn.2005.02.015.

    Article  PubMed  Google Scholar 

  3. Thorne SE, Radford MJ, McCormick J. The multiple meanings of long-term gastrostomy in children with severe disability. J Pediatr Nurs. 1997;12:89–99. doi:10.1016/S0882-5963(97)80029-2.

    Article  PubMed  CAS  Google Scholar 

  4. Craig GM, Scambler G, Spitz L. Why parents of children with neurodevelopment disabilities requiring gastrostomy feeding need more support. Dev Med Child Neurol. 2003;45:183–8. doi:10.1017/S0012162203000355.

    Article  PubMed  Google Scholar 

  5. Adams RA, Gordon C, Spangler AA. Maternal stress in caring for children with feeding disabilities: implications for health care providers. J Am Diet Assoc. 1999;99:962–6. doi:10.1016/S0002-8223(99)00228-X.

    Article  PubMed  CAS  Google Scholar 

  6. Franklin L, Rodger S. Parents’ perspectives on feeding medically compromised children: implications for occupational therapy. Aust Occup Ther J. 2003;50:137–47. doi:10.1046/j.1440-1630.2003.00375.x.

    Article  Google Scholar 

  7. Liley AJ, Manthorpe J. The impact of home enteral tube feeding in everyday life: a qualitative study. Health Soc Care Community. 2003;11:415–22. doi:10.1046/j.1365-2524.2003.00444.x.

    Article  PubMed  Google Scholar 

  8. Lewis E, Kritzinger A. Parental experiences of feeding problems in their infants with Down syndrome. Down Syndr Res Pract. 2004;9:45–52.

    Article  Google Scholar 

  9. Craig GM, Scambler G. Negotiating mothering against the odds: gastrostomy tube feeding, stigma, governmentality and disabled children. Soc Sci Med. 2006;62:1115–25. doi:10.1016/j.socscimed.2005.07.007.

    Article  PubMed  Google Scholar 

  10. Raina P, O’Donnell M, Rosenbaum P, Brehaut J, Walter SD, Russell D, et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics. 2005;115:e626–36. doi:10.1542/peds.2004-1689.

    Article  PubMed  Google Scholar 

  11. Hoddinott P, Pill R. A qualitative study of women’s views about how health professionals communicate about infant feeding. Health Expect. 2000;3:224–33. doi:10.1046/j.1369-6513.2000.00108.x.

    Article  PubMed  Google Scholar 

  12. Woodward K. Motherhood: identities, meanings and myths. In: Woodward K, editor. Identity and difference. London: Sage Publications; 1997.

    Google Scholar 

  13. Brown S, Lumley J, Small R, Astbury J. Missing voices: the experience of motherhood. Melbourne: Oxford University Press; 1994.

    Google Scholar 

  14. Spalding K, McKeever P. Mothers’ experiences caring for children with disabilities who require a gastrostomy tube. J Pediatr Nurs. 1998;13:234–43. doi:10.1016/S0882-5963(98)80050-X.

    Article  PubMed  CAS  Google Scholar 

  15. Boerner K, Schulz R, Horowitz A. Positive aspects of caregiving and adaptation to bereavement. Psychol Aging. 2004;19:668–75. doi:10.1037/0882-7974.19.4.668.

    Article  PubMed  Google Scholar 

  16. Cohen CA, Colantonio A, Vernich L. Positive aspects of caregiving: rounding out the caregiver experience. Int J Geriatr Psychiatry. 2002;17:184–8. doi:10.1002/gps.561.

    Article  PubMed  Google Scholar 

  17. Blaska JK. Cyclical Grieving: reoccurring emotions experienced by parents who have children with disabilities. Minnesota: St Cloud State University; 1998. ERIC Document Reproduction Service No. ED 419 349.

    Google Scholar 

  18. American Speech-Language Hearing Association. Roles of speech-language pathologists in swallowing and feeding disorders: technical report. ASHA Desk Ref. 2002;3:181–99.

    Google Scholar 

  19. Holloway I, Wheeler S. Qualitative research for nurses. Oxford: Blackwell Science; 1996.

    Google Scholar 

  20. Maxwell JA. Causal explanation, qualitative research, and scientific inquiry in education. Educ Res. 2004;33:3–11. doi:10.3102/0013189X033002003.

    Google Scholar 

  21. Whalley Hammell K, Carpenter C. Qualitative research in evidence-based rehabilitation. Philadelphia: Churchill Livingstone; 2004.

    Google Scholar 

  22. Patton MQ. Qualitative research & evaluation methods. 3rd ed. San Diego, CA: Sage Publications; 2002.

    Google Scholar 

  23. Rubin HJ, Rubin IS. Qualitative interviewing: the art of hearing data. 2nd ed. San Diego, CA: Sage Publications; 2005.

    Google Scholar 

  24. Riemen DJ. The essential structure of a caring interaction. In: Munhall PM, Oiler CJ, editors. Nursing research: a qualitative perspective. 2nd ed. Norwalk, CT: Appleton-Crofts; 1988. p. 85–105.

    Google Scholar 

  25. Colaizzi PF. Psychological research as the phenomenologist views it. In: Valle R, King M, editors. Existential-Phenomenological alternatives for Psychology. New York: Oxford Press; 1978. p. 48–71.

    Google Scholar 

  26. Giorgi A. The theory, practice and evaluation of the phenomenological method as a qualitative research procedure. J Phenom Psychol. 1997;28:235–60. doi:10.1163/156916297X00103.

    Article  Google Scholar 

  27. Lincoln YS, Guba E. Naturalistic inquiry. San Diego, CA: Sage Publications; 1985.

    Google Scholar 

  28. Ulin PR, Robinson ET, Tolley EE. Qualitative methods in public health: a field guide for applied research. San Francisco: Jossey-Bass; 2005.

    Google Scholar 

  29. Olshansky S. Chronic sorrow: a response to having a mentally defective child. Soc Casework. 1962;43:190–3.

    Google Scholar 

  30. Wikler L, Wasow M, Hatfield E. Chronic sorrow revisited: parents vs. professional depiction of the adjustment of parents of mentally retarded children. Am J Orthopsychiatry. 1981;51:63–70.

    Article  PubMed  CAS  Google Scholar 

  31. Summers JA, Behr SK, Turnbull AP. Positive adaptation and coping strengths of families who have children with disabilities. In: Singer GHS, Irvin LK, editors. Support for caregiving families: enabling positive adaptation to disability. Michigan: Paul H. Brookes Pub. Co.; 1989. p 27–40.

  32. Fraley AM. Chronic sorrow in parents of premature children. Child Health Care. 1986;15:114–8. doi:10.1207/s15326888chc1502_10.

    Article  Google Scholar 

  33. Damrosch SP, Perry LA. Self-reported adjustment, chronic sorrow, and coping of parents of children with Down syndrome. Nurs Res. 1989;38:25–30. doi:10.1097/00006199-198901000-00006.

    Article  PubMed  CAS  Google Scholar 

  34. Eakes GG. Chronic sorrow: the lived experience of parents of chronically mentally ill individuals. Arch Psychiatr Nurs. 1995;9:77–84. doi:10.1016/S0883-9417(95)80004-2.

    Article  PubMed  CAS  Google Scholar 

  35. Hobdell E. Chronic sorrow and depression in parents of children with neural tube defects. J Neurosci Nurs. 2004;36:82–8.

    Article  PubMed  Google Scholar 

  36. Northington L. Chronic sorrow in caregivers of school-age children with sickle cell disease: a grounded theory approach. Issues Compr Pediatr Nurs. 2000;23:141–54. doi:10.1080/01460860050174693.

    Article  PubMed  CAS  Google Scholar 

  37. Summers JA, Behr SK, Turnbull AP. Positive adaptation and coping strengths of families who have children with disabilities. Fam Relat. 1998;47:263–8. doi:10.2307/584976.

    Article  Google Scholar 

  38. Boss P. Ambiguous loss. In: Walsh F, McGoldrick M, editors. Living beyond loss: death in the family. New York: Norton; 1991. p. 164–75.

    Google Scholar 

  39. Judson LH. Protective care: mothering a child dependent on parenteral nutrition. J Fam Nurs. 2004;10:93–120. doi:10.1177/1074840703260907.

    Article  Google Scholar 

  40. Cuskelly M, Pulman L, Hayes A. Parenting and employment decisions of parents with a preschool child with a disability. J Intellect Dev Disabil. 1998;23:319–32. doi:10.1080/13668259800033801.

    Article  Google Scholar 

  41. Fuller GB, Rankin RE. Differences in levels of parental stress among mothers of learning disabled, emotionally impaired, and regular school children. Percept Mot Skills. 1994;78:583–92.

    PubMed  CAS  Google Scholar 

  42. Cadell S, Regehr C, Hemsworth D. Factors contributing to posttraumatic growth: a proposed structural equation model. Am J Orthopsychiatry. 2003;73:279–87. doi:10.1037/0002-9432.73.3.279.

    Article  PubMed  Google Scholar 

  43. Calhoun LG, Tedeschi RG. Posttraumatic growth: future directions. In: Tedeschi RG, Park CL, Calhoun LG, editors. Posttraumatic growth: positive changes in the aftermath of crisis. Mahwah, NJ: Erlbaum Associates; 1998. p. 215–40.

    Google Scholar 

  44. Baksi A, Cradock S. What is empowerment. IDF Bull. 1998;43:29–31.

    Google Scholar 

  45. Cohen MH. The unknown and the unknowable: managing sustained uncertainty. West J Nurs Res. 1993;15:77–96. doi:10.1177/019394599301500106.

    Article  PubMed  CAS  Google Scholar 

  46. Jerrett MD, Costello EA. Gaining control: parents’ experiences of accommodating children’s asthma. Clin Nurs Res. 1996;5:294–308. doi:10.1177/105477389600500305.

    Article  PubMed  CAS  Google Scholar 

  47. McKeever P. Mothering chronically-ill technology-dependent children: an analysis using critical theory. PhD thesis, York University, Toronto, Ontario, Canada; 1991.

  48. Douglas SJ, Michaels MW. The mommy myth: idealization of mother-hood and how it has undermined women. New York: Free Press; 2004.

    Google Scholar 

  49. Nobile C, Drotar D. Research on the quality of parent-provider communication in pediatric care: implications and recommendations. J Dev Behav Pediatr. 2003;24:279–90.

    PubMed  Google Scholar 

  50. Singer GHS, Marquis J, Powers LK, Blanchard L, Divenere N, Santelli B, et al. A multi-site evaluation of parent-to-parent programs for parents of children with disabilities. J Early Interv. 1999;22:217–29.

    Article  Google Scholar 

  51. Rogers C. A way of being. New York: Houghton Mifflin; 1980.

    Google Scholar 

  52. Hastings RP, Taunt HM. Positive perceptions in families of children with developmental disabilities. Am J Ment Retard. 2002;107:116–27. doi:10.1352/0895-8017(2002)107<0116:PPIFOC>2.0.CO;2.

    Article  PubMed  Google Scholar 

  53. Scorgie K, Sobsey D. Transformational outcomes associated with parenting children who have disabilities. Ment Retard. 2000;38:195–206. doi:10.1352/0047-6765(2000)038<0195:TOAWPC>2.0.CO;2.

    Article  PubMed  CAS  Google Scholar 

  54. Silverman PR. Editorial: Living with grief, rebuilding a world. J Palliat Med. 2002;5:449–54. doi:10.1089/109662102320135414.

    Article  PubMed  Google Scholar 

  55. Marks S. Divided Sisterhood: race, class and gender in the South African Nursing profession. Basingstoke: St Martin’s Press; 1994.

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  1. Division of Communication Sciences and Disorders, School of Health and Rehabilitation Sciences, University of Cape Town, Observatory, Cape Town, 7925, South Africa

    Ronelle Hewetson & Shajila Singh

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  1. Ronelle Hewetson
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Correspondence to Ronelle Hewetson.

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Hewetson, R., Singh, S. The Lived Experience of Mothers of Children with Chronic Feeding and/or Swallowing Difficulties. Dysphagia 24, 322–332 (2009). https://doi.org/10.1007/s00455-009-9210-7

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