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J Pediatr Intensive Care 2023; 12(04): 330-336
DOI: 10.1055/s-0043-1771345
Original Article

Factors Affecting the Quality of Life of Parents Caring for Pediatric Patients with a Tracheostomy

Alper Koker 
1   Division of Pediatric Critical Care, Department of Pediatrics, Akdeniz University Faculty of Medicine, Antalya, Turkiye
,
Nazan Ülgen Tekerek
1   Division of Pediatric Critical Care, Department of Pediatrics, Akdeniz University Faculty of Medicine, Antalya, Turkiye
,
Gonca Şahan Erbaşı Nalbant
2   Department of Pediatrics, Akdeniz University Faculty of Medicine, Antalya, Turkiye
,
Erdem Çebişli
1   Division of Pediatric Critical Care, Department of Pediatrics, Akdeniz University Faculty of Medicine, Antalya, Turkiye
,
Oguz Dursun
1   Division of Pediatric Critical Care, Department of Pediatrics, Akdeniz University Faculty of Medicine, Antalya, Turkiye
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Abstract

Objectives This study aimed to evaluate factors affecting the quality of life (QOL) of parents of children who underwent placement of a tracheostomy while in the pediatric intensive care unit (PICU) through postdischarge use of a standardized questionnaire, Functional Status Scale (FSS) for patients, and WHOQoL-BREF (a QOL scale) for parents.

Methods The parents were initially contacted by telephone, postdischarge, during which the standardized questionnaire was completed. The functional status of the patients was evaluated using the FSS, and the QOL of parents was determined through use of the WHOQoL-BREF scale.

Results From 2011 to 2021, tracheostomy was performed in 119 PICU patients. Overall, 93 patients were excluded due to death in 66 (56%), decannulation in 24 (20%) and, 3 (2%) were not available for follow-up. The parents of 26 (22%) patients were available for follow-up and for which the standardized questionnaire FSS and WHOQoL-BREF QOL scales were completed. The mean FSS score of the patients was elevated at 17.84. In comparison, reduced mean scores were observed for parental physical health of 20.61, psychological health of 20.57, social health of 11.15, and environmental health of 29.00. As a result, a moderate (r < 0.80), yet significant (p ≤ 0.004) negative correlation was found between the FSS scores of patients and the physical, social relationships, environmental, and psychological health QOL scores of parents.

Conclusion This study is unique in that, to our knowledge, it is the first to compare parental QOL with the FSS of pediatric patients who have undergone a tracheostomy while hospitalized in the PICU. Our findings indicate that the parental QOL was reduced in four areas and correlates with an elevation in FSS score (indicating a greater functional disorder) of pediatric patients who had previously undergone a tracheostomy while hospitalized in the PICU.

Keywords

pediatric tracheostomy - quality of life - Functional Status Scale

Ethical Approval

The University Hospital Ethics Committee approved the study. All procedures were conducted in accordance with the ethical rules and the principles of the Declaration of Helsinki.


Patient Consent

Signed informed consent statement was obtained from the parents/guardians of all patients included in this study.


Authors' Contributions

Research idea and study design were developed by Alper Koker. Data acquisition was done by Alper Koker. Data analysis/interpretation was done by Gonca Şahan Erbaşı Nalbant. Statistical analysis was done by Nazan Ulgen Tekerek. Supervision and mentorship were done by Oguz Dursun.




Publication History

Received: 25 May 2023

Accepted: 11 June 2023

Article published online:
24 July 2023

© 2023. Thieme. All rights reserved.

Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany

 

  • References

  • 1 Glendinning C, Kirk S, Guiffrida A, Lawton D. Technology-dependent children in the community: definitions, numbers and costs. Child Care Health Dev 2001; 27 (04) 321-334
    CrossrefPubMedGoogle Scholar
  • 2 Beale H. Respite care for technology-dependent children and their families. Paediatr Nurs 2002; 14 (07) 18-19
    CrossrefPubMedGoogle Scholar
  • 3 McCormick ME, Ward E, Roberson DW, Shah RK, Stachler RJ, Brenner MJ. Life after tracheostomy: patient and family perspectives on teaching, transitions, and multidisciplinary teams. Otolaryngol Head Neck Surg 2015; 153 (06) 914-920
    CrossrefPubMedGoogle Scholar
  • 4 Das P, Zhu H, Shah RK, Roberson DW, Berry J, Skinner ML. Tracheotomy-related catastrophic events: results of a national survey. Laryngoscope 2012; 122 (01) 30-37
    CrossrefPubMedGoogle Scholar
  • 5 Stevenson RD, Conaway M, Chumlea WC. et al; North American Growth in Cerebral Palsy Study. Growth and health in children with moderate-to-severe cerebral palsy. Pediatrics 2006; 118 (03) 1010-1018
    CrossrefPubMedGoogle Scholar
  • 6 Ones K, Yilmaz E, Cetinkaya B, Caglar N. Assessment of the quality of life of mothers of children with cerebral palsy (primary caregivers). Neurorehabil Neural Repair 2005; 19 (03) 232-237
    CrossrefPubMedGoogle Scholar
  • 7 Yilmaz H, Erkin G, Nalbant L. Depression and anxiety levels in mothers of children with cerebral palsy: a controlled study. Eur J Phys Rehabil Med 2013; 49 (06) 823-827
    PubMedGoogle Scholar
  • 8 Brehaut JC, Kohen DE, Raina P. et al. The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers?. Pediatrics 2004; 114 (02) e182-e191
    CrossrefPubMedGoogle Scholar
  • 9 The WHOQOL Group. The World Health Organization Quality of Life Assessment (WHOQOL): development and general psychometric properties. Soc Sci Med 1998; 46 (12) 1569-1585
    CrossrefPubMedGoogle Scholar
  • 10 Eser E, Fidaner H, Fidaner C, Eser S, Elbi H, Göker E. WHOQOL-100 and WHOQOL-BREF psychometric properties [in Turkish]. 3P Derg 1999; 7: 23-41
    PubMedGoogle Scholar
  • 11 Harputluoğlu N, Alkan Özdemir S, Yılmaz Ü, Çelik T. Evaluation of primary caregiver parents' quality of life in pediatric palliative care with the WHOQOL-Bref (TR). Turk Pediatri Ars 2021; 56 (05) 429-439
    PubMedGoogle Scholar
  • 12 Mutoh T, Mutoh T, Tsubone H. et al. Impact of long-term hippotherapy on the walking ability of children with cerebral palsy and quality of life of their caregivers. Front Neurol 2019; 10: 834
    CrossrefPubMedGoogle Scholar
  • 13 Madani BM, Al Raddadi R, Al Jaouni S, Omer M, Al Awa MI. Quality of life among caregivers of sickle cell disease patients: a cross sectional study. Health Qual Life Outcomes 2018; 16 (01) 176
    CrossrefPubMedGoogle Scholar
  • 14 Sekioka A, Fukumoto K, Miyake H. et al. Long-term outcomes after pediatric tracheostomy-candidates for and timing of decannulation. J Surg Res 2020; 255: 216-223
    CrossrefPubMedGoogle Scholar
  • 15 Farida JP, Lawrence LA, Svider PF. et al. Protecting the airway and the physician: aspects of litigation arising from tracheotomy. Head Neck 2016; 38 (05) 751-754
    CrossrefPubMedGoogle Scholar
  • 16 Dursun O, Ozel D. Early and long-term outcome after tracheostomy in children. Pediatr Int 2011; 53 (02) 202-206
    CrossrefPubMedGoogle Scholar
  • 17 Tolunay İ, Dinçer Yıldızdaş R, Horoz ÖÖ. et al. Çocuk Yoğun Bakım Ünitemizde Trakeostomi Açılan Hastalarımızın Değerlendirilmesi. J Pediatr Emerg Intensive Care Med 2015; 2: 61-64
    PubMedGoogle Scholar
  • 18 Tamayo GJ, Broxson A, Munsell M, Cohen MZ. Caring for the caregiver. Oncol Nurs Forum 2010; 37 (01) E50-E57
    CrossrefPubMedGoogle Scholar
  • 19 Surender S, Gowda VK, Sanjay KS, Basavaraja GV, Benakappa N, Benakappa A. Caregiver-reported health-related quality of life of children with cerebral palsy and their families and its association with gross motor function: a South Indian study. J Neurosci Rural Pract 2016; 7 (02) 223-227
    CrossrefPubMedGoogle Scholar
  • 20 Dobhal M, Juneja M, Jain R, Sairam S, Thiagarajan D. Health-related quality of life in children with cerebral palsy and their families. Indian Pediatr 2014; 51 (05) 385-387
    CrossrefPubMedGoogle Scholar