Table 3 Self-management of patients with tracheostomy

Managing the therapeutic regimen

Tracheostomy care

(n = 6)

• Altered airway [3] leads to protecting the stoma in cold or dusty environment [3]

• Stoma care [56]

• Complications [49]

• Medical aids [51] such as tracheostomy tube [62], communication aids [62], voice prothesis [56], humidification aids [62], suction devices [62], shower / swimming [62], others (e.g. jewelry) [62]

• Altered body care regarding dealing with water [25], showering [3, 51] leads to the need to protecting the stoma [3]

Tracheostomy-related physical/

functional changes

(n = 27)

• Altered speech [2, 3, 16, 29, 35, 49, 56, 51, 54, 64, 65, 69] and altered voice [4, 16, 25, 32, 51, 53] lead to the need to learn to speak [50], to adopt to new speaking methods [3] by using communication aids [49] / technology [3]

• Altered respiratory function [2, 52] / respiratory problems [25] regarding altered secretion / bronchial discharge [3, 4, 60], cough [3, 16, 69], dyspnea [16, 29], noisy breathiness [13], shortness of breath [54] lead to the need to managing mucus discharge [3, 51]

• Altered swallowing [2, 16, 49, 56, 51, 54, 60] leads to the need to careful eating [60]

• Altered senses [16, 29], altered smell [3, 4, 25, 49, 54, 59, 61, 68], altered taste [3, 25, 49, 54, 59, 68]

• Altered oral health regarding dry mouth [54, 61, 66], sticky saliva [16, 54, 61]

• Pain in the shoulder, neck [49, 56, 66], when swallowing [66]

• Altered defecation [52]

• Altered appearance [2, 4, 25, 35, 51, 65] associated with (dis)figurement [57], aesthetics [64] and altered body image perception [3, 13, 55]

• Power(lessness) [25, 54, 60], altered capacity [12, 49], physical fitness [51] and activity [65] leads to the need to improving physical performance [50] and recovery [50]

• Fatigue [29, 69], tiredness [54]

Managing

role & behavior changes

Changed roles

(n = 17)

• Altered self-identity [25, 35, 53]: loss of femininity [51], being a man / woman [57], gender confusion [2]

• Altered social life [49] regarding social roles [28, 35, 51, 53], family [2,3,4, 51, 69], (spousal) relationship [49, 51, 57], friendships [35], sexual life [4, 16, 51, 57] leads to social disruption [64], searching for social integration, information and exchange of experience [66] by developing new roles [2] and getting to know other patients [50], for example active membership [32, 67] in peer groups [3]

• Altered professional life [2, 3, 50, 51, 53] leads to the need to occupational rehabilitation [50] and/or starting work-related activities [51]

Changed everyday behavior

(n = 24)

• Altered social participation [2, 53, 58] in social activities [3, 4, 29, 32, 33] regarding social eating / eating out in public [3, 16, 32, 33, 49, 54, 53, 68], events [32, 33] lead to the need to adjusting to social settings [55] / daily situations [2], social withdrawal [16, 51, 63]

• Altered sports activities [25, 33] / leisure activities [33, 51] lead to the need to adjustments to perform hobbies [51], take new activities [33, 51], resume activities [35, 51]

• Altered communication [2, 32] with partners [57] and others [4, 52], also phone calls [3, 4, 69] lead to communication in different ways [32]

• Altered eating [35, 56, 54, 52, 60, 64] regarding altered enjoyment [68, 69], appetite [29, 66], time required [68]

Managing emotions

Negative emotions

(n = 16)

• Distress [3, 12, 25, 32], depression [2, 4, 16, 25, 28, 32, 55, 60, 63], feeling of uselessness [25], feeling of loneliness [4], feeling of vulnerability [3], concern [55]

• Fear / anxiety [16, 32] for breathing problems [28, 51, 57, 63], restlessness [59]

• Anger (frustration [3, 59], irritability [59])

• Shame [3, 4, 32, 57], worsened self-esteem [30] leads to cover tracheostomy [2] by clothing selection [53]

• Guilt (sense of regret [3, 60])

• Stigma [3, 25, 32, 51, 55, 63] leads to the need to deal with negative reactions of others [55]

Positive emotions

(n = 3)

• Life saving feeling [2, 55]

• Optimism [60]