Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2023 Jul 24;12(4):330-336.
doi: 10.1055/s-0043-1771345. eCollection 2023 Dec.

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

Alper Koker  1 , Nazan Ülgen Tekerek  1 , Gonca Şahan Erbaşı Nalbant  2 , Erdem Çebişli  1 , Oguz Dursun  1
Affiliations

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

Alper Koker et al. J Pediatr Intensive Care. .

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: Functional Status Scale; pediatric tracheostomy; quality of life.

PubMed Disclaimer

Conflict of interest statement

Conflict of Interest None declared.

Figures

Fig. 1
Fig. 1
The relationship between physical health and Functional Status Scale (FSS) score.
Fig. 2
Fig. 2
The relationship between social health and Functional Status Scale (FSS) score.
Fig. 3
Fig. 3
The relationship between environmental health and Functional Status Scale (FSS) score.
Fig. 4
Fig. 4
The relationship between psychological health and Functional Status Scale (FSS) score.
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

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. - PubMed
    1. Beale H. Respite care for technology-dependent children and their families. Paediatr Nurs. 2002;14(07):18–19. - PubMed
    1. McCormick M E, Ward E, Roberson D W, Shah R K, Stachler R J, Brenner M J. Life after tracheostomy: patient and family perspectives on teaching, transitions, and multidisciplinary teams. Otolaryngol Head Neck Surg. 2015;153(06):914–920. - PubMed
    1. Das P, Zhu H, Shah R K, Roberson D W, Berry J, Skinner M L. Tracheotomy-related catastrophic events: results of a national survey. Laryngoscope. 2012;122(01):30–37. - PMC - PubMed
    1. North American Growth in Cerebral Palsy Study . Stevenson R D, Conaway M, Chumlea W C et al.Growth and health in children with moderate-to-severe cerebral palsy. Pediatrics. 2006;118(03):1010–1018. - PubMed