Exploring the experiences of healthcare professionals in South Africa and Uganda around communicating with children about life-threatening conditions: a workshop-based qualitative study to inform the adaptation of communication frameworks for use in these settings
Objectives This study aimed to explore how published communication frameworks could be amended to ensure applicability and cultural appropriateness for professionals to support family-centred conversations by investigating’ healthcare professionals’ (1) experiences of providing support to families w...
| Main Authors: | , , , , , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
BMJ Publishing Group
2023-01-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/13/1/e064741.full |
| _version_ | 1811176231204290560 |
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| author | Sue Ziebland Julia Ambler Julia Downing Alan Stein Elizabeth Namukwaya Elizabeth Nabirye Louise Walker Elizabeth Rapa Jeffrey R Hanna Louise J Dalton Teresa Pollard Stephanie Santos-Paulo Yasmin Gogay David Kavuma Ruth Mary Kemigisha Juliet Namyeso Tracey Brand Beverley G Neethling |
| author_facet | Sue Ziebland Julia Ambler Julia Downing Alan Stein Elizabeth Namukwaya Elizabeth Nabirye Louise Walker Elizabeth Rapa Jeffrey R Hanna Louise J Dalton Teresa Pollard Stephanie Santos-Paulo Yasmin Gogay David Kavuma Ruth Mary Kemigisha Juliet Namyeso Tracey Brand Beverley G Neethling |
| author_sort | Sue Ziebland |
| collection | DOAJ |
| description | Objectives This study aimed to explore how published communication frameworks could be amended to ensure applicability and cultural appropriateness for professionals to support family-centred conversations by investigating’ healthcare professionals’ (1) experiences of providing support to families when a caregiver or a dependent child (<18 years old) has a life-threatening condition, (2) perceived challenges for caregivers and healthcare professionals in communicating with children about illness, (3) perceptions of how clinicians could be equipped to facilitate conversations between caregivers and children about an adult or the child’s own life-threatening condition and (4) suggestions for amendments to previously published guidelines to ensure cultural relevance in South Africa and Uganda.Design A qualitative study involving two 2-day workshops with embedded focus group discussions, break out rooms and consensus discussions.Setting Health and social care and third sector organisations in South Africa and Uganda.Participants Thirty-two professionals providing care to families affected by life-threatening conditions in South Africa or Uganda who were aged 18 years or older and able to converse in English.Results Participants identified obstacles to having conversations with caregivers about children and to telling children about serious illness during consultations. These included patients’ beliefs about illness, medicine and death, language barriers between families and the healthcare team, and emotional and practical challenges for professionals in having these conversations. Culturally appropriate adaptations were made to previously published communication frameworks for professionals to support family-centred conversations.Conclusions Culturally sensitive communication frameworks could help healthcare professionals to talk with families about what children need to know when they or a caregiver have a serious illness. More broadly, effective communication could be facilitated by promoting healthcare professionals’ and communities’ understanding of the benefits of telling children about illness within the family. Together these strategies may mitigate the psychological impact of global disease on children and their families. |
| first_indexed | 2024-04-10T19:48:49Z |
| format | Article |
| id | doaj.art-c1cca041112b4e729cbaeb85da1823ec |
| institution | Directory Open Access Journal |
| issn | 2044-6055 |
| language | English |
| last_indexed | 2024-04-10T19:48:49Z |
| publishDate | 2023-01-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj.art-c1cca041112b4e729cbaeb85da1823ec2023-01-28T15:30:10ZengBMJ Publishing GroupBMJ Open2044-60552023-01-0113110.1136/bmjopen-2022-064741Exploring the experiences of healthcare professionals in South Africa and Uganda around communicating with children about life-threatening conditions: a workshop-based qualitative study to inform the adaptation of communication frameworks for use in these settingsSue Ziebland0Julia Ambler1Julia Downing2Alan Stein3Elizabeth Namukwaya4Elizabeth Nabirye5Louise Walker6Elizabeth Rapa7Jeffrey R Hanna8Louise J Dalton9Teresa Pollard10Stephanie Santos-Paulo11Yasmin Gogay12David Kavuma13Ruth Mary Kemigisha14Juliet Namyeso15Tracey Brand16Beverley G Neethling17Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UKDepartment of Paediatrics, Nelson Mandela Medical School, Durban, South AfricaDepartment of Medicine, Makerere University, Kampala, UgandaSchool of Public Health, University of the Witwatersrand, Johannesburg, South AfricaDepartment of Medicine, Makerere University, Kampala, UgandaPalliative Care Education and Research Consortium, Kampala, UgandaGrey`s Hospital, Pietermaritzburg, South AfricaDepartment of Psychiatry, University of Oxford, Oxford, Oxfordshire, UKDepartment of Psychiatry, University of Oxford, Oxford, Oxfordshire, UKDepartment of Psychiatry, University of Oxford, Oxford, Oxfordshire, UKPsychological and Mental Health Services, Great Ormond Street Hospital for Children, London, UKDepartment of Psychiatry, University of Oxford, Oxford, Oxfordshire, UKDepartment of Paediatrics and Child Health, University of KwaZulu-Natal, Durban, South AfricaDepartment of Health Sciences, Mildmay Uganda Institute of Health Sciences, Kampala, UgandaUnited Nations Interim Security Force for Abyei, Abyei, South SudanThe Surgery Uganda, Kampala, UgandaUmduduzi – Hospice Care for Children, Durban, South AfricaDepartment of Paediatrics and Child Health, University of KwaZulu-Natal, Durban, South AfricaObjectives This study aimed to explore how published communication frameworks could be amended to ensure applicability and cultural appropriateness for professionals to support family-centred conversations by investigating’ healthcare professionals’ (1) experiences of providing support to families when a caregiver or a dependent child (<18 years old) has a life-threatening condition, (2) perceived challenges for caregivers and healthcare professionals in communicating with children about illness, (3) perceptions of how clinicians could be equipped to facilitate conversations between caregivers and children about an adult or the child’s own life-threatening condition and (4) suggestions for amendments to previously published guidelines to ensure cultural relevance in South Africa and Uganda.Design A qualitative study involving two 2-day workshops with embedded focus group discussions, break out rooms and consensus discussions.Setting Health and social care and third sector organisations in South Africa and Uganda.Participants Thirty-two professionals providing care to families affected by life-threatening conditions in South Africa or Uganda who were aged 18 years or older and able to converse in English.Results Participants identified obstacles to having conversations with caregivers about children and to telling children about serious illness during consultations. These included patients’ beliefs about illness, medicine and death, language barriers between families and the healthcare team, and emotional and practical challenges for professionals in having these conversations. Culturally appropriate adaptations were made to previously published communication frameworks for professionals to support family-centred conversations.Conclusions Culturally sensitive communication frameworks could help healthcare professionals to talk with families about what children need to know when they or a caregiver have a serious illness. More broadly, effective communication could be facilitated by promoting healthcare professionals’ and communities’ understanding of the benefits of telling children about illness within the family. Together these strategies may mitigate the psychological impact of global disease on children and their families.https://bmjopen.bmj.com/content/13/1/e064741.full |
| spellingShingle | Sue Ziebland Julia Ambler Julia Downing Alan Stein Elizabeth Namukwaya Elizabeth Nabirye Louise Walker Elizabeth Rapa Jeffrey R Hanna Louise J Dalton Teresa Pollard Stephanie Santos-Paulo Yasmin Gogay David Kavuma Ruth Mary Kemigisha Juliet Namyeso Tracey Brand Beverley G Neethling Exploring the experiences of healthcare professionals in South Africa and Uganda around communicating with children about life-threatening conditions: a workshop-based qualitative study to inform the adaptation of communication frameworks for use in these settings BMJ Open |
| title | Exploring the experiences of healthcare professionals in South Africa and Uganda around communicating with children about life-threatening conditions: a workshop-based qualitative study to inform the adaptation of communication frameworks for use in these settings |
| title_full | Exploring the experiences of healthcare professionals in South Africa and Uganda around communicating with children about life-threatening conditions: a workshop-based qualitative study to inform the adaptation of communication frameworks for use in these settings |
| title_fullStr | Exploring the experiences of healthcare professionals in South Africa and Uganda around communicating with children about life-threatening conditions: a workshop-based qualitative study to inform the adaptation of communication frameworks for use in these settings |
| title_full_unstemmed | Exploring the experiences of healthcare professionals in South Africa and Uganda around communicating with children about life-threatening conditions: a workshop-based qualitative study to inform the adaptation of communication frameworks for use in these settings |
| title_short | Exploring the experiences of healthcare professionals in South Africa and Uganda around communicating with children about life-threatening conditions: a workshop-based qualitative study to inform the adaptation of communication frameworks for use in these settings |
| title_sort | exploring the experiences of healthcare professionals in south africa and uganda around communicating with children about life threatening conditions a workshop based qualitative study to inform the adaptation of communication frameworks for use in these settings |
| url | https://bmjopen.bmj.com/content/13/1/e064741.full |
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