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The Assessment of quality of life in children with Tracheostomies and their families in a Low to Middle Income Country (LMIC)
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 a...
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| Format: | Thesis |
| Language: | English |
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Division of Otorhinolaryngology
2022
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| _version_ | 1867613164458213376 |
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| access_status_str | Open Access |
| author | Din, Taseer Feroze |
| author2 | Peer, Shazia |
| author_browse | Din, Taseer Feroze Peer, Shazia |
| author_facet | Peer, Shazia Din, Taseer Feroze |
| author_sort | Din, Taseer Feroze |
| collection | Thesis |
| description | 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. |
| format | Thesis |
| id | oai:open.uct.ac.za:11427/35714 |
| institution | University of Cape Town (South Africa) |
| language | eng |
| last_indexed | 2026-06-10T12:31:47.142Z |
| license_str | Not specified — see source repository |
| provenance_str_mv | Harvested via OAI-PMH from UCTD — University of Cape Town Open Access Repository |
| publishDate | 2022 |
| publishDateRange | 2022 |
| publishDateSort | 2022 |
| publisher | Division of Otorhinolaryngology |
| publisherStr | Division of Otorhinolaryngology |
| record_format | dspace |
| source_str | UCTD — University of Cape Town Open Access Repository |
| spelling | oai:open.uct.ac.za:11427/35714 The Assessment of quality of life in children with Tracheostomies and their families in a Low to Middle Income Country (LMIC) Din, Taseer Feroze Peer, Shazia Pediatric tracheostomy quality of life low resource 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. 2022-02-18T05:57:29Z 2022-02-18T05:57:29Z 2021 2022-02-10T08:55:48Z Master Thesis Masters MMed http://hdl.handle.net/11427/35714 eng application/pdf Division of Otorhinolaryngology Faculty of Health Sciences |
| spellingShingle | Pediatric tracheostomy quality of life low resource Din, Taseer Feroze The Assessment of quality of life in children with Tracheostomies and their families in a Low to Middle Income Country (LMIC) |
| thesis_degree_str | Master's |
| title | The Assessment of quality of life in children with Tracheostomies and their families in a Low to Middle Income Country (LMIC) |
| title_full | The Assessment of quality of life in children with Tracheostomies and their families in a Low to Middle Income Country (LMIC) |
| title_fullStr | The Assessment of quality of life in children with Tracheostomies and their families in a Low to Middle Income Country (LMIC) |
| title_full_unstemmed | The Assessment of quality of life in children with Tracheostomies and their families in a Low to Middle Income Country (LMIC) |
| title_short | The Assessment of quality of life in children with Tracheostomies and their families in a Low to Middle Income Country (LMIC) |
| title_sort | assessment of quality of life in children with tracheostomies and their families in a low to middle income country lmic |
| topic | Pediatric tracheostomy quality of life low resource |
| url | http://hdl.handle.net/11427/35714 |
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