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Dysphagia

, Volume 25, Issue 1, pp 26–34 | Cite as

Perceptions of Psychological Issues Related to Dysphagia Differ in Acute and Chronic Patients

  • Rosemary Martino
  • Dorcas Beaton
  • Nicholas E. Diamant
Original Article

Abstract

The objectives of this study were (1) to compare and contrast the psychological issues perceived by patients with oropharyngeal dysphagia and explore if the differences relate to recovery trajectory, and (2) to determine whether patients, caregivers, and clinicians had different perceptions of how psychological issues interacted with the lung and nutrition issues as consequences of dysphagia. Two focus groups (one each of acute and chronic patients) were conducted with a total of 8 participants. Four focus groups (3 with clinicians and 1 with caregivers) were also conducted. Through the constant comparison method of grounded theory, the differences in perceptions between acute and chronic patients with dysphagia as well as clinicians and caregivers were explored using theoretical sampling. Two themes evolved: (1) acute and chronic patients differed on how they perceived and prioritized major psychological dimensions; (2) acute patients, chronic patients, caregivers, and clinicians varied in their perceptions of how psychological issues interacted with lung and nutrition issues. The qualitative methodology was successful in identifying contrasting opinions on psychological issues of dysphagia between acute and chronic patients, which differ from the perspectives of clinicians and caregivers. It is important for treating clinicians to be aware of psychological issues, to address them according to the patients’ clinical recovery, and to consider the interplay between psychological and biomedical consequences.

Keywords

Deglutition disorders Acute Chronic Outcome Psychology Qualitative research Deglutition 

Notes

Acknowledgments

The authors thank the patients, clinicians, and caregivers who participated in these focus groups and allowed their opinions to be analyzed. All authors had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. RM was supported by a CIHR Postdoctoral Fellowship and DM was supported by a CIHR New Investigator Award. MED-Diet Inc provided a grant to run the patient focus groups but had no influence on the interpretation of data or the final conclusions.

References

  1. 1.
    Ekberg O, Hamdy S, Woisard V, Wuttge-Hannig A, Ortega P. Social and psychological burden of dysphagia: Its impact on diagnosis and treatment. Dysphagia. 2002;17(2):139–46. doi: 10.1007/s00455-001-0113-5.CrossRefPubMedGoogle Scholar
  2. 2.
    Gustafsson B, Theorell T. Adaptedness and coping in dysphagic students. Dysphagia. 1995;10:86–92. doi: 10.1007/BF00440077.CrossRefPubMedGoogle Scholar
  3. 3.
    Jacobsson C, Axelsson K, Osterlind PO, Norberg A. How people with stroke and healthy older people experience the eating process. J Clin Nurs. 2000;9(2):255–64. doi: 10.1046/j.1365-2702.2000.00355.x.CrossRefPubMedGoogle Scholar
  4. 4.
    Tibbling L, Gustafsson B. Dysphagia and its consequences in the elderly. Dysphagia. 1991;6:200–2. doi: 10.1007/BF02493526.CrossRefPubMedGoogle Scholar
  5. 5.
    McHorney CA, Bricker DE, Kramer AE, Rosenbek JC, Robbins J, Chignell KA, et al. The SWAL-QOL outcomes tool for oropharyngeal dysphagia in adults: I. Conceptual foundation and item development. Dysphagia. 2000;15:115–21. (see comments).PubMedGoogle Scholar
  6. 6.
    Chen AY, Frankowski R, Bishop-Leone J, Hebert T, Leyk S, Lewin J, et al. The development and validation of a dysphagia-specific quality-of-life questionnaire for patients with head and neck cancer: The MD. Anderson dysphagia inventory. Arch Otolaryngol Head Neck Surg. 2001;127:870–6.PubMedGoogle Scholar
  7. 7.
    Gillespie MB, Brodsky MB, Day TA, Lee FS, Martin-Harris B. Swallowing-related quality of life after head and neck cancer treatment. Laryngoscope. 2004;114:1362–7. doi: 10.1097/00005537-200408000-00008.CrossRefPubMedGoogle Scholar
  8. 8.
    McHorney CA, Robbins J, Lomax K, Rosenbek JC, Chignell K, Kramer AE, et al. The SWAL–QOL and SWAL–CARE outcomes tool for oropharyngeal dysphagia in adults: III. Documentation of reliability and validity. Dysphagia. 2002;17:97–114. doi: 10.1007/s00455-001-0109-1.CrossRefPubMedGoogle Scholar
  9. 9.
    Martino R, Beaton D, Diamant NE. Using different perspectives to generate items for the MOD: a new scale of medical outcomes for dysphagia. J Clin Epidemiol. 2009;62:518–26.CrossRefPubMedGoogle Scholar
  10. 10.
    Carr AJ, Gibson B, Robinson PG. Measuring quality of life: is quality of life determined by expectations or experience? BMJ. 2001;322(7296):1240–3. doi: 10.1136/bmj.322.7296.1240.CrossRefPubMedGoogle Scholar
  11. 11.
    Martino R, Diamant NE. Patients’, physicians’ views about psychosocial issues related to dysphagia. Dysphagia. 2005;20:84. (abstract).Google Scholar
  12. 12.
    Strauss A, Corbin J. Basics of qualitative research: techniques and procedures for developing grounded theory. 2nd ed. Thousand Oaks, CA: Sage Publications; 1998.Google Scholar
  13. 13.
    Charmaz K. ‘Discovering’ chronic illness: using grounded theory. Soc Sci Med. 1990;30:1161–72. doi: 10.1016/0277-9536(90)90256-R.CrossRefPubMedGoogle Scholar
  14. 14.
    Charmaz K. Grounded theory: objectivist and constructivist methods. In: Denzin NK, Lincoln YS, editors. The handbook of qualitative research. 2nd ed. Thousand Oaks, CA: Sage Publications; 2000. p. 509–35.Google Scholar
  15. 15.
    Madriz E. Focus groups in feminist research. In: Denzin NK, Lincoln YS, editors. Handbook of qualitative research. Thousand Oaks, CA: Sage Publications; 2000. p. 835–50.Google Scholar
  16. 16.
    Verbrugge LM, Juarez L. Profile of arthritis disability. Public Health Rep. 2001;116(Suppl 1):157–79.CrossRefPubMedGoogle Scholar
  17. 17.
    Miles MB, Huberman AM. Qualitative data analysis: an expanded sourcebook. 2nd ed. Thousand Oaks, CA: Sage Publications; 1994.Google Scholar
  18. 18.
    Krueger RA. Focus groups: a practical guide for applied research. Thousand Oaks, CA: Sage Publications; 1994.Google Scholar
  19. 19.
    Rice PL, Ezzy D. Qualitative research methods: a health focus. Toronto: Oxford University Press; 1999.Google Scholar
  20. 20.
    Krueger RA. Developing questions for focus groups. Thousand Oaks, CA: Sage Publications; 1998.Google Scholar
  21. 21.
    Meadows LM, Morse JM. Constructing evidence within the qualitative project. In: Morse JM, Swanson JM, Kuzel AJ, editors. The nature of qualitative evidence. Thousand Oaks, CA: Sage Publications; 2001. p. 187–202.Google Scholar
  22. 22.
    Kaplan RM. Quality of life: an outcomes perspective. Arch Phys Med Rehabil. 2002;83 Suppl 2(12):S44–50. doi: 10.1053/apmr.2002.36955.CrossRefGoogle Scholar
  23. 23.
    McQuellon RP, Russell GB, Rambo TD, Craven BL, Radford J, Perry JJ, et al. Quality of life and psychological distress of bone marrow transplant recipients: the ‘time trajectory’ to recovery over the first year. Bone Marrow Transplant. 1998;21:477–86. doi: 10.1038/sj.bmt.1701115.CrossRefPubMedGoogle Scholar
  24. 24.
    Hammerlid E, Ahlner-Elmqvist M, Bjordal K, Biorklund A, Evensen J, Boysen M, et al. A prospective multicentre study in Sweden and Norway of mental distress and psychiatric morbidity in head and neck cancer patients. Br J Cancer. 1999;80:766–74. doi: 10.1038/sj.bjc.6690420.CrossRefPubMedGoogle Scholar
  25. 25.
    Hammerlid E, Silander E, Hornestam L, Sullivan M. Health-related quality of life three years after diagnosis of head and neck cancer—a longitudinal study. Head Neck. 2001;23:113–25. doi: 10.1002/1097-0347(200102)23:2<113::AID-HED1006>3.0.CO;2-W.CrossRefPubMedGoogle Scholar
  26. 26.
    De Boer MF, McCormick LK, Pruyn JF, Ryckman RM, van den Borne BW. Physical and psychosocial correlates of head and neck cancer: a review of the literature. Otolaryngol Head Neck Surg. 1999;120:427–36. doi: 10.1016/S0194-5998(99)70287-1.CrossRefPubMedGoogle Scholar
  27. 27.
    Wilkinson PR, Wolfe CD, Warburton FG, Rudd AG, Howard RS, Ross-Russell RW, et al. A long-term follow-up of stroke patients. Stroke. 1997;28:507–12.PubMedGoogle Scholar
  28. 28.
    Nguyen NP, Sallah S, Karlsson U, Antoine JE. Combined chemotherapy and radiation therapy for head and neck malignancies: quality of life issues. Cancer. 2002;94:1131–41. doi: 10.1002/cncr.10257.CrossRefPubMedGoogle Scholar
  29. 29.
    Cowan MJ, Pike KC, Budzynski HK. Psychosocial nursing therapy following sudden cardiac arrest: impact on two-year survival. Nurs Res. 2001;50:68–76. doi: 10.1097/00006199-200103000-00002.CrossRefPubMedGoogle Scholar
  30. 30.
    Alonzo AA. The experience of chronic illness and post-traumatic stress disorder: the consequences of cumulative adversity. Soc Sci Med. 2000;50:1475–84. doi: 10.1016/S0277-9536(99)00399-8.CrossRefPubMedGoogle Scholar
  31. 31.
    Fife BL, Huster GA, Cornetta KG, Kennedy VN, Akard LP, Broun ER. Longitudinal study of adaptation to the stress of bone marrow transplantation. J Clin Oncol. 2000;18:1539–49.PubMedGoogle Scholar
  32. 32.
    Olson K. Using qualitative research in clinical practice. Thousand Oaks, CA: Sage Publications; 2001.Google Scholar

Copyright information

© Springer Science+Business Media, LLC 2009

Authors and Affiliations

  • Rosemary Martino
    • 1
    • 2
  • Dorcas Beaton
    • 3
  • Nicholas E. Diamant
    • 4
    • 5
  1. 1.Faculty of Medicine, Department of Speech-Language PathologyUniversity of TorontoTorontoCanada
  2. 2.Health Care Outcomes and Research, Toronto Western Research InstituteToronto Western HospitalTorontoCanada
  3. 3.Mobility Program Clinical Research Unit, and Keeman Research Centre, Li Ka Shing Knowledge InstituteSt. Michael’s HospitalTorontoCanada
  4. 4.Department of MedicineUniversity of TorontoTorontoCanada
  5. 5.Applied Interventional Research, Toronto Western Research InstituteToronto Western HospitalTorontoCanada

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