Abstract
Complications of oropharyngeal dysphagia include aspiration pneumonia, malnutrition, dehydration, and impact on psychosocial well-being. However, patients, caregivers, and clinicians perceive the importance of these complications differently, with patients addressing psychosocial sequelae as predominant. The chapter provides an overview of the psychological and social impact of dysphagia on patients and their caregivers. Embarrassment due to inability to eat and drink in a social acceptable way leads to social isolation. Diminished self-esteem, fear, anxiety, frustration, and depression may be experienced. Eating habits may be overturned, especially in case of more restricted diets and introduction of enteral feedings. Over time, patients find a range of coping strategies, which may be beneficial for some, while negative for others. Caregivers have to cope with changes of their role and responsibilities; in reaction to these, affective symptoms may arise. Implications for clinical practice are discussed, including a multidisciplinary and holistic assessment of the patient and the caregiver to be performed periodically, personalization of the counseling, skill-building programs, and interactions with other patients.
References
Bjelland I, Dahl AA, Haug TT, Neckelmann D (2002) The validity of the Hospital Anxiety and Depression Scale. An updated literature review. J Psychosom Res 52:69–77
Burton CR (2000) Living with stroke: a phenomenological study. J Adv Nurs 32:301–309
Craig GM, Scambler G, Spitz L (2003) Why parents of children with neurodevelopmental disabilities requiring gastrostomy feeding need more support. Dev Med Child Neurol 45:183–188
Dong Y, Zhang CJ, Shi J, Deng J, Lan CN (2016) Clinical application of ICF key codes to evaluate patients with dysphagia following stroke. Medicine (Baltimore) 95:e4479. doi:10.1097/MD.0000000000004479
Ekberg O, Hamdy S, Woisard V, Wuttge-Hannig A, Ortega P (2002) Social and psychological burden of dysphagia: its impact on diagnosis and treatment. Dysphagia 17:139–146
Farri A, Accornero A, Burdese C (2007) Social importance of dysphagia: its impact on diagnosis and therapy. Acta Otorhinolaryngol Ital 27:83–86
Heinemann A (2005) Putting outcome measurement in context: a rehabilitation psychology perspective. Rehabil Psychol 50:6–14
Hewetson R, Singh S (2009) The lived experience of mothers of children with chronic feeding and/or swallowing difficulties. Dysphagia 24:322–332. doi:10.1007/s00455-009-9210-7
Johansson AE, Johansson U (2009) Relatives' experiences of family members’ eating difficulties. Scand J Occup Ther 16:25–32. doi:10.1080/11038120802257195
Levasseur M, Richard L, Gauvin L, Raymond E (2010) Inventory and analysis of definitions of social participation found in the aging literature: proposed taxonomy of social activities. Soc Sci Med 71:2141–2149
Maclean J, Cotton S, Perry A (2009) Dysphagia following a total laryngectomy: the effect on quality of life, functioning, and psychological well-being. Dysphagia 24:314–321. doi:10.1007/s00455-009-9209-0
Martino R, Beaton D, Diamant NE (2009) Using different perspectives to generate items for a new scale measuring medical outcomes of dysphagia (MOD). J Clin Epidemiol 62:518–526. doi:10.1016/j.jclinepi.2008.05.007
Martino R, Beaton D, Diamant NE (2010) Perceptions of psychological issues related to dysphagia differ in acute and chronic patients. Dysphagia 25:26–34. doi:10.1007/s00455-009-9225-0
Mayre-Chilton KM, Talwar BP, Goff LM (2011) Different experiences and perspectives between head and neck cancer patients and their care-givers on their daily impact of a gastrostomy tube. J Hum Nutr Diet 24:449–459. doi:10.1111/j.1365-277X.2011.01165.x
McHorney CA, Bricker DE, Kramer AE, Rosenbek JC, Robbins J, Chignell KA, Logemann JA, Clarke C (2000a) The SWAL-QOL outcomes tool for oropharyngeal dysphagia in adults: I. Conceptual foundation and item development. Dysphagia 15:115–121
McHorney CA, Bricker DE, Robbins J, Kramer AE, Rosenbek JC, Chignell KA (2000b) The SWAL-QOL outcomes tool for oropharyngeal dysphagia in adults: II. Item reduction and preliminary scaling. Dysphagia 15:122–133
McHorney CA, Robbins J, Lomax K, Rosenbek JC, Chignell K, Kramer AE, Bricker DE (2002) The SWAL-QOL and SWAL-CARE outcomes tool for oropharyngeal dysphagia in adults: III. Documentation of reliability and validity. Dysphagia 17:97–114
Medin J, Larson J, von Arbin M, Wredling R, Tham K (2010) Elderly persons’ experience and management of eating situations 6 months after stroke. Disabil Rehabil 32:1346–1353. doi:10.3109/09638280903514747
Miller N, Noble E, Jones D, Burn D (2006) Hard to swallow: dysphagia in Parkinson’s disease. Age Ageing 35:614–618
Nund RL, Ward EC, Scarinci NA, Cartmill B, Kuipers P, Porceddu SV (2014a) Carers’ experiences of dysphagia in people treated for head and neck cancer: a qualitative study. Dysphagia 29:450–458. doi:10.1007/s00455-014-9527-8
Nund RL, Scarinci NA, Cartmill B, Ward EC, Kuipers P, Porceddu SV (2014b) Application of the International Classification of Functioning, Disability and Health (ICF) to people with dysphagia following non-surgical head and neck cancer management. Dysphagia 29:692–703. doi:10.1007/s00455-014-9563-4
Nund RL, Ward EC, Scarinci NA, Cartmill B, Kuipers P, Porceddu SV (2014c) Survivors’ experiences of dysphagia-related services following head and neck cancer: implications for clinical practice. Int J Lang Commun Disord 49:354–363. doi:10.1111/1460-6984.12071
Nund RL, Scarinci NA, Cartmill B, Ward EC, Kuipers P, Porceddu SV (2016) Third-party disability in carers of people with dysphagia following non-surgical management for head and neck cancer. Disabil Rehabil 38:462–471. doi:10.3109/09638288.2015.1046563
Patterson JM, McColl E, Wilson J, Carding P, Rapley T (2015) Head and neck cancer patients’ perceptions of swallowing following chemoradiotherapy. Support Care Cancer 23:3531–3538. doi:10.1007/s00520-015-2715-8
Penner JL, McClement S, Lobchuk M, Daeninck P (2012) Family members’ experiences caring for patients with advanced head and neck cancer receiving tube feeding: a descriptive phenomenological study. J Pain Symptom Manag 44:563–571. doi:10.1016/j.jpainsymman.2011.10.016
Petersen MC, Kedia S, Davis P, Newman L, Temple C (2006) Eating and feeding are not the same: caregivers’ perceptions of gastrostomy feeding for children with cerebral palsy. Dev Med Child Neurol 48:713–717
Piškur B, Daniëls R, Jongmans MJ, Ketelaar M, Smeets RJ, Norton M, Beurskens AJ (2014) Participation and social participation: are they distinct concepts? Clin Rehabil 28:211–220. doi:10.1177/0269215513499029
Serel Arslan S, Demir N, Karaduman AA (2017) The anxiety level of caregivers of neurological patients with dysphagia. Dysphagia 32(4):570–574. doi:10.1007/s00455-017-9801-7
Sleigh G (2005) Mothers’ voice: a qualitative study on feeding children with cerebral palsy. Child Care Health Dev 31:373–383
Sonies B (2000) Assessment and treatment of functional swallowing in dysphagia. In: Worrall LM, Frattali C (eds) Neurogenic communication disorders: a functional approach. Thieme, New York, pp 262–275
Swan K, Speyer R, Heijnen BJ, Wagg B, Cordier R (2015) Living with oropharyngeal dysphagia: effects of bolus modification on health-related quality of life––a systematic review. Qual Life Res 24:2447–2456. doi:10.1007/s11136-015-0990-y
Threats TT (2007) Use of the ICF in dysphagia management. Semin Speech Lang 28:323–333
Ullrich S, Crichton J (2015) Older people with dysphagia: transitioning to texture-modified food. Br J Nurs 24:686–692. 10.12968/bjon.2015.24.13.686
Verdonschot RJ, Baijens LW, Serroyen JL, Leue C, Kremer B (2013) Symptoms of anxiety and depression assessed with the Hospital Anxiety and Depression Scale in patients with oropharyngeal dysphagia. J Psychosom Res 75:451–455. doi:10.1016/j.jpsychores.2013.08.021
Verdonschot RJ, Baijens L, Vanbelle S, Florie M, Kremer B, Leue C (2016) The relationship between fiberoptic endoscopic evaluation of swallowing outcome and symptoms of anxiety and depression in dysphagic patients. Laryngoscope 126:E199–E207. doi:10.1002/lary.25698
Woodman P, Riazi A, Pereira C, Jones F (2014) Social participation post stroke: a meta-ethnographic review of the experiences and views of community-dwelling stroke survivors. Disabil Rehabil 36:2031–2043. doi:10.3109/09638288.2014.887796
World Health Organization (WHO) (2001) International classification of functioning, disability and health, ICF. World Health Organization, Geneva
Zigmond AS, Snaith RP (1983) The hospital anxiety and depression scale. Acta Psychiatr Scand 67:361–370
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Pizzorni, N. (2017). Social and Psychologic Impact of Dysphagia. In: Ekberg, O. (eds) Dysphagia. Medical Radiology(). Springer, Cham. https://doi.org/10.1007/174_2017_132
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