Cargando…
QOL-32. THE PROMOTE STUDY: HEALTH-RELATED QUALITY OF LIFE COMMUNICATION NEEDS OF CHILDREN, ADOLESCENTS, AND THEIR FAMILIES ATTENDING OUTPATIENT CONSULTATIONS AFTER TREATMENT FOR A BRAIN TUMOUR
BACKGROUND: Childhood brain tumours and their treatment can reduce health-related quality of life (HRQoL) and cause anxiety and depression, withdrawal, and social isolation. Improved communication within outpatient consultations may allow early identification and treatment of these issues. We explor...
Autores principales: | , , , , , , , , , |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Oxford University Press
2020
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7715145/ http://dx.doi.org/10.1093/neuonc/noaa222.692 |
_version_ | 1783618885811961856 |
---|---|
author | Stubley, Shelly Freeman, Anita Liossi, Christina Darlington, Anne-Sophie Grootenhuis, Martha Hargrave, Darren Morris, Christopher Walker, David Kennedy, Colin Bull, Kim |
author_facet | Stubley, Shelly Freeman, Anita Liossi, Christina Darlington, Anne-Sophie Grootenhuis, Martha Hargrave, Darren Morris, Christopher Walker, David Kennedy, Colin Bull, Kim |
author_sort | Stubley, Shelly |
collection | PubMed |
description | BACKGROUND: Childhood brain tumours and their treatment can reduce health-related quality of life (HRQoL) and cause anxiety and depression, withdrawal, and social isolation. Improved communication within outpatient consultations may allow early identification and treatment of these issues. We explored family communication needs in survivors of childhood brain tumours receiving six-monthly follow-up outpatient review within the English NHS. METHODS: Semi-structured interviews were conducted with 18 families whose child aged 8–17 years had finished treatment for a brain tumour within the preceding five years. Thematic analysis used the Framework Method. RESULTS: Adjusting to change and finding a “new normal” was the overarching theme to emerge. HRQoL issues included fatigue, coping with physical changes, challenges at school, isolation, and adjusting to changes in abilities. Survivors described a need for greater knowledge about and more support with changes in cognitive functioning. Parents spoke about the impact on the wider family and their changed role in supporting the child’s HRQoL. Communication barriers included short-term memory loss, shyness, and the need to suppress or regulate emotions evoked by these issues. Communication needs included more information regarding recovery and rehabilitation and/or help managing anxiety or emotional health. CONCLUSION: The above communication needs and barriers should be addressed. Having a digital record to document and monitor this information systematically could improve service planning and provide patients and their families with the resources to reach their full potential and experience a better HRQoL. |
format | Online Article Text |
id | pubmed-7715145 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2020 |
publisher | Oxford University Press |
record_format | MEDLINE/PubMed |
spelling | pubmed-77151452020-12-09 QOL-32. THE PROMOTE STUDY: HEALTH-RELATED QUALITY OF LIFE COMMUNICATION NEEDS OF CHILDREN, ADOLESCENTS, AND THEIR FAMILIES ATTENDING OUTPATIENT CONSULTATIONS AFTER TREATMENT FOR A BRAIN TUMOUR Stubley, Shelly Freeman, Anita Liossi, Christina Darlington, Anne-Sophie Grootenhuis, Martha Hargrave, Darren Morris, Christopher Walker, David Kennedy, Colin Bull, Kim Neuro Oncol Neuropsychology/Quality of Life BACKGROUND: Childhood brain tumours and their treatment can reduce health-related quality of life (HRQoL) and cause anxiety and depression, withdrawal, and social isolation. Improved communication within outpatient consultations may allow early identification and treatment of these issues. We explored family communication needs in survivors of childhood brain tumours receiving six-monthly follow-up outpatient review within the English NHS. METHODS: Semi-structured interviews were conducted with 18 families whose child aged 8–17 years had finished treatment for a brain tumour within the preceding five years. Thematic analysis used the Framework Method. RESULTS: Adjusting to change and finding a “new normal” was the overarching theme to emerge. HRQoL issues included fatigue, coping with physical changes, challenges at school, isolation, and adjusting to changes in abilities. Survivors described a need for greater knowledge about and more support with changes in cognitive functioning. Parents spoke about the impact on the wider family and their changed role in supporting the child’s HRQoL. Communication barriers included short-term memory loss, shyness, and the need to suppress or regulate emotions evoked by these issues. Communication needs included more information regarding recovery and rehabilitation and/or help managing anxiety or emotional health. CONCLUSION: The above communication needs and barriers should be addressed. Having a digital record to document and monitor this information systematically could improve service planning and provide patients and their families with the resources to reach their full potential and experience a better HRQoL. Oxford University Press 2020-12-04 /pmc/articles/PMC7715145/ http://dx.doi.org/10.1093/neuonc/noaa222.692 Text en © The Author(s) 2020. Published by Oxford University Press on behalf of the Society for Neuro-Oncology. http://creativecommons.org/licenses/by-nc/4.0/ This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com |
spellingShingle | Neuropsychology/Quality of Life Stubley, Shelly Freeman, Anita Liossi, Christina Darlington, Anne-Sophie Grootenhuis, Martha Hargrave, Darren Morris, Christopher Walker, David Kennedy, Colin Bull, Kim QOL-32. THE PROMOTE STUDY: HEALTH-RELATED QUALITY OF LIFE COMMUNICATION NEEDS OF CHILDREN, ADOLESCENTS, AND THEIR FAMILIES ATTENDING OUTPATIENT CONSULTATIONS AFTER TREATMENT FOR A BRAIN TUMOUR |
title | QOL-32. THE PROMOTE STUDY: HEALTH-RELATED QUALITY OF LIFE COMMUNICATION NEEDS OF CHILDREN, ADOLESCENTS, AND THEIR FAMILIES ATTENDING OUTPATIENT CONSULTATIONS AFTER TREATMENT FOR A BRAIN TUMOUR |
title_full | QOL-32. THE PROMOTE STUDY: HEALTH-RELATED QUALITY OF LIFE COMMUNICATION NEEDS OF CHILDREN, ADOLESCENTS, AND THEIR FAMILIES ATTENDING OUTPATIENT CONSULTATIONS AFTER TREATMENT FOR A BRAIN TUMOUR |
title_fullStr | QOL-32. THE PROMOTE STUDY: HEALTH-RELATED QUALITY OF LIFE COMMUNICATION NEEDS OF CHILDREN, ADOLESCENTS, AND THEIR FAMILIES ATTENDING OUTPATIENT CONSULTATIONS AFTER TREATMENT FOR A BRAIN TUMOUR |
title_full_unstemmed | QOL-32. THE PROMOTE STUDY: HEALTH-RELATED QUALITY OF LIFE COMMUNICATION NEEDS OF CHILDREN, ADOLESCENTS, AND THEIR FAMILIES ATTENDING OUTPATIENT CONSULTATIONS AFTER TREATMENT FOR A BRAIN TUMOUR |
title_short | QOL-32. THE PROMOTE STUDY: HEALTH-RELATED QUALITY OF LIFE COMMUNICATION NEEDS OF CHILDREN, ADOLESCENTS, AND THEIR FAMILIES ATTENDING OUTPATIENT CONSULTATIONS AFTER TREATMENT FOR A BRAIN TUMOUR |
title_sort | qol-32. the promote study: health-related quality of life communication needs of children, adolescents, and their families attending outpatient consultations after treatment for a brain tumour |
topic | Neuropsychology/Quality of Life |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7715145/ http://dx.doi.org/10.1093/neuonc/noaa222.692 |
work_keys_str_mv | AT stubleyshelly qol32thepromotestudyhealthrelatedqualityoflifecommunicationneedsofchildrenadolescentsandtheirfamiliesattendingoutpatientconsultationsaftertreatmentforabraintumour AT freemananita qol32thepromotestudyhealthrelatedqualityoflifecommunicationneedsofchildrenadolescentsandtheirfamiliesattendingoutpatientconsultationsaftertreatmentforabraintumour AT liossichristina qol32thepromotestudyhealthrelatedqualityoflifecommunicationneedsofchildrenadolescentsandtheirfamiliesattendingoutpatientconsultationsaftertreatmentforabraintumour AT darlingtonannesophie qol32thepromotestudyhealthrelatedqualityoflifecommunicationneedsofchildrenadolescentsandtheirfamiliesattendingoutpatientconsultationsaftertreatmentforabraintumour AT grootenhuismartha qol32thepromotestudyhealthrelatedqualityoflifecommunicationneedsofchildrenadolescentsandtheirfamiliesattendingoutpatientconsultationsaftertreatmentforabraintumour AT hargravedarren qol32thepromotestudyhealthrelatedqualityoflifecommunicationneedsofchildrenadolescentsandtheirfamiliesattendingoutpatientconsultationsaftertreatmentforabraintumour AT morrischristopher qol32thepromotestudyhealthrelatedqualityoflifecommunicationneedsofchildrenadolescentsandtheirfamiliesattendingoutpatientconsultationsaftertreatmentforabraintumour AT walkerdavid qol32thepromotestudyhealthrelatedqualityoflifecommunicationneedsofchildrenadolescentsandtheirfamiliesattendingoutpatientconsultationsaftertreatmentforabraintumour AT kennedycolin qol32thepromotestudyhealthrelatedqualityoflifecommunicationneedsofchildrenadolescentsandtheirfamiliesattendingoutpatientconsultationsaftertreatmentforabraintumour AT bullkim qol32thepromotestudyhealthrelatedqualityoflifecommunicationneedsofchildrenadolescentsandtheirfamiliesattendingoutpatientconsultationsaftertreatmentforabraintumour |