The Assessment of quality of life in children with Tracheostomies and their families in a Low to Middle Income Country (LMIC)
| dc.contributor.advisor | Peer, Shazia | |
| dc.contributor.author | Din, Taseer Feroze | |
| dc.date.accessioned | 2022-02-18T05:57:29Z | |
| dc.date.available | 2022-02-18T05:57:29Z | |
| dc.date.issued | 2021 | |
| dc.date.updated | 2022-02-10T08:55:48Z | |
| dc.description.abstract | Introduction The Breatheasy© Tracheostomy Program based at the Red Cross War Memorial Children's Hospital, Cape Town, manages children mostly from poor socio-economic backgrounds. In our resource-limited setting, it is unclear how these families cope with the demands of a tracheostomised child. We aim to assess the quality of life (QOL) of tracheostomised children and their families as the first study of its kind in a low-resource setting. Methods A descriptive, observational study was done to assess the QOL of tracheostomised children managed by the Breatheasy© Program over 10 months. Children with tracheostomies for longer than 6 months, complex syndromic children, and home ventilated children were included. The validated Paediatric Tracheotomy Health Status Instrument (PTHSI) was utilised, where a higher score, implied a better outcome. Results A total of 68 families were recruited. In 57 (85.1%) of the carers, the highest level of education achieved was primary or high school. Twenty-seven (42%) families reported having an annual household income of less than $675 US Dollars (ZAR10,000). Sixteen (24%) resided within informal housing. The mean scores for the 4 PTHSI domains were: physical symptoms 24.8/35 (70.9%), frequency/financial impact of medical visits 14.2/15 (94.7%), QOL of child 8.8/15 (58.7%), QOL of carer 62.3/85 (73.3%); the overall score was 110.2/150 (73.5%). There was no significant correlation between total PTHSI and annual household income, carer's educational status or type of housing. Children with a concomitant major medical condition had a significantly poorer total PTHSI scores (p-value 0.024). Conclusion Tracheostomy care compounds challenging socio-economic circumstances. In our experience, with adequate training, home-care nursing is not necessary. Despite difficult living conditions, the Breatheasy© Program empowers children and their families to live independently of the hospital system and appear to be thriving. The decision to perform a paediatric tracheostomy should not be influenced by the carer's education level, socioeconomic status, or on the basis of formal or informal housing. Children with major medical comorbidities represent a group that requires more support. | |
| dc.identifier.apacitation | Din, T. F. (2021). <i>The Assessment of quality of life in children with Tracheostomies and their families in a Low to Middle Income Country (LMIC)</i>. (). ,Faculty of Health Sciences ,Division of Otorhinolaryngology. Retrieved from http://hdl.handle.net/11427/35714 | en_ZA |
| dc.identifier.chicagocitation | Din, Taseer Feroze. <i>"The Assessment of quality of life in children with Tracheostomies and their families in a Low to Middle Income Country (LMIC)."</i> ., ,Faculty of Health Sciences ,Division of Otorhinolaryngology, 2021. http://hdl.handle.net/11427/35714 | en_ZA |
| dc.identifier.citation | Din, T.F. 2021. The Assessment of quality of life in children with Tracheostomies and their families in a Low to Middle Income Country (LMIC). . ,Faculty of Health Sciences ,Division of Otorhinolaryngology. http://hdl.handle.net/11427/35714 | en_ZA |
| dc.identifier.ris | TY - Master Thesis AU - Din, Taseer Feroze AB - Introduction The Breatheasy© Tracheostomy Program based at the Red Cross War Memorial Children's Hospital, Cape Town, manages children mostly from poor socio-economic backgrounds. In our resource-limited setting, it is unclear how these families cope with the demands of a tracheostomised child. We aim to assess the quality of life (QOL) of tracheostomised children and their families as the first study of its kind in a low-resource setting. Methods A descriptive, observational study was done to assess the QOL of tracheostomised children managed by the Breatheasy© Program over 10 months. Children with tracheostomies for longer than 6 months, complex syndromic children, and home ventilated children were included. The validated Paediatric Tracheotomy Health Status Instrument (PTHSI) was utilised, where a higher score, implied a better outcome. Results A total of 68 families were recruited. In 57 (85.1%) of the carers, the highest level of education achieved was primary or high school. Twenty-seven (42%) families reported having an annual household income of less than $675 US Dollars (ZAR10,000). Sixteen (24%) resided within informal housing. The mean scores for the 4 PTHSI domains were: physical symptoms 24.8/35 (70.9%), frequency/financial impact of medical visits 14.2/15 (94.7%), QOL of child 8.8/15 (58.7%), QOL of carer 62.3/85 (73.3%); the overall score was 110.2/150 (73.5%). There was no significant correlation between total PTHSI and annual household income, carer's educational status or type of housing. Children with a concomitant major medical condition had a significantly poorer total PTHSI scores (p-value 0.024). Conclusion Tracheostomy care compounds challenging socio-economic circumstances. In our experience, with adequate training, home-care nursing is not necessary. Despite difficult living conditions, the Breatheasy© Program empowers children and their families to live independently of the hospital system and appear to be thriving. The decision to perform a paediatric tracheostomy should not be influenced by the carer's education level, socioeconomic status, or on the basis of formal or informal housing. Children with major medical comorbidities represent a group that requires more support. DA - 2021_ DB - OpenUCT DP - University of Cape Town KW - Pediatric KW - tracheostomy KW - quality of life KW - low resource LK - https://open.uct.ac.za PY - 2021 T1 - The Assessment of quality of life in children with Tracheostomies and their families in a Low to Middle Income Country (LMIC) TI - The Assessment of quality of life in children with Tracheostomies and their families in a Low to Middle Income Country (LMIC) UR - http://hdl.handle.net/11427/35714 ER - | en_ZA |
| dc.identifier.uri | http://hdl.handle.net/11427/35714 | |
| dc.identifier.vancouvercitation | Din TF. The Assessment of quality of life in children with Tracheostomies and their families in a Low to Middle Income Country (LMIC). []. ,Faculty of Health Sciences ,Division of Otorhinolaryngology, 2021 [cited yyyy month dd]. Available from: http://hdl.handle.net/11427/35714 | en_ZA |
| dc.language.rfc3066 | eng | |
| dc.publisher.department | Division of Otorhinolaryngology | |
| dc.publisher.faculty | Faculty of Health Sciences | |
| dc.subject | Pediatric | |
| dc.subject | tracheostomy | |
| dc.subject | quality of life | |
| dc.subject | low resource | |
| dc.title | The Assessment of quality of life in children with Tracheostomies and their families in a Low to Middle Income Country (LMIC) | |
| dc.type | Master Thesis | |
| dc.type.qualificationlevel | Masters | |
| dc.type.qualificationlevel | MMed |