Caregivers' experience of seeking care for adolescents with sickle cell disease in a tertiary care hospital in Bahrain.
<h4>Objective</h4>This study aimed to determine caregivers' perspectives on difficulties encountered while seeking care for adolescents with sickle cell disease (SCD). It explored the social, emotional, and financial impact of caring for an adolescent with SCD on their caregivers.&l...
| Main Authors: | , , , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Public Library of Science (PLoS)
2022-01-01
|
| Series: | PLoS ONE |
| Online Access: | https://doi.org/10.1371/journal.pone.0266501 |
| _version_ | 1818239274814799872 |
|---|---|
| author | Khadija Al Saif Fatema Mohamed Abdulla Anwaar Alrahim Sara Abduljawad Zainab Matrook Jenan Jaafar Abdulla Fatima Bughamar Fatema Alasfoor Rana Taqi Amna Almarzooq Jamil Ahmed |
| author_facet | Khadija Al Saif Fatema Mohamed Abdulla Anwaar Alrahim Sara Abduljawad Zainab Matrook Jenan Jaafar Abdulla Fatima Bughamar Fatema Alasfoor Rana Taqi Amna Almarzooq Jamil Ahmed |
| author_sort | Khadija Al Saif |
| collection | DOAJ |
| description | <h4>Objective</h4>This study aimed to determine caregivers' perspectives on difficulties encountered while seeking care for adolescents with sickle cell disease (SCD). It explored the social, emotional, and financial impact of caring for an adolescent with SCD on their caregivers.<h4>Study design</h4>A mixed-method study in a major tertiary care hospital in Bahrain was conducted between June and August 2019. Cross-sectional questionnaires and thematic analyzed interviews were performed with 101 and 18 Bahraini caregivers of adolescents with SCD (aged 10-18 years), respectively.<h4>Results</h4>Lack of parking lots (52.5%) and traffic jams (27%) were identified as the most common challenges in seeking hospital care for adolescents with SCD. These difficulties, including prolonged waiting in the emergency room, discouraged more than half of the caregivers who preferred to seek care from smaller healthcare centers. Most caregivers reported receiving a high degree of support from their families, who emotionally encouraged them to facilitate patient care (73.3%). Therefore, their relationships with their friends, colleagues, and relatives were not significantly affected. Catastrophic health expenditure occurred in 14.8% of caregivers. Qualitative themes that emerged were A) the intricacy of caring for adolescents with SCD, B) dissatisfaction with hospital facilities, and C) insufficient healthcare services, wherein caregivers reported adolescents' experiences with services during hospital visits. Subthemes for the intricacy of caring for adolescents with SCD were 1) the psychological tragedy, summarizing the initial caregivers' feelings after the confirmed diagnosis, 2) caregiving hardships that described the caregivers' emotional and health burden while accepting and adjusting to the disease, and 3) the cost of care on families, which highlights the financial burden of the disease on families.<h4>Conclusion</h4>The caregivers of adolescents with SCD experienced several overwhelming challenges, including problems in accessing healthcare and receiving medical services, in addition to influences on the emotional, financial, and social aspects of their lives. |
| first_indexed | 2024-12-12T12:54:57Z |
| format | Article |
| id | doaj.art-150e1bd008a2470b83384abdf86a8cca |
| institution | Directory Open Access Journal |
| issn | 1932-6203 |
| language | English |
| last_indexed | 2024-12-12T12:54:57Z |
| publishDate | 2022-01-01 |
| publisher | Public Library of Science (PLoS) |
| record_format | Article |
| series | PLoS ONE |
| spelling | doaj.art-150e1bd008a2470b83384abdf86a8cca2022-12-22T00:23:54ZengPublic Library of Science (PLoS)PLoS ONE1932-62032022-01-01174e026650110.1371/journal.pone.0266501Caregivers' experience of seeking care for adolescents with sickle cell disease in a tertiary care hospital in Bahrain.Khadija Al SaifFatema Mohamed AbdullaAnwaar AlrahimSara AbduljawadZainab MatrookJenan Jaafar AbdullaFatima BughamarFatema AlasfoorRana TaqiAmna AlmarzooqJamil Ahmed<h4>Objective</h4>This study aimed to determine caregivers' perspectives on difficulties encountered while seeking care for adolescents with sickle cell disease (SCD). It explored the social, emotional, and financial impact of caring for an adolescent with SCD on their caregivers.<h4>Study design</h4>A mixed-method study in a major tertiary care hospital in Bahrain was conducted between June and August 2019. Cross-sectional questionnaires and thematic analyzed interviews were performed with 101 and 18 Bahraini caregivers of adolescents with SCD (aged 10-18 years), respectively.<h4>Results</h4>Lack of parking lots (52.5%) and traffic jams (27%) were identified as the most common challenges in seeking hospital care for adolescents with SCD. These difficulties, including prolonged waiting in the emergency room, discouraged more than half of the caregivers who preferred to seek care from smaller healthcare centers. Most caregivers reported receiving a high degree of support from their families, who emotionally encouraged them to facilitate patient care (73.3%). Therefore, their relationships with their friends, colleagues, and relatives were not significantly affected. Catastrophic health expenditure occurred in 14.8% of caregivers. Qualitative themes that emerged were A) the intricacy of caring for adolescents with SCD, B) dissatisfaction with hospital facilities, and C) insufficient healthcare services, wherein caregivers reported adolescents' experiences with services during hospital visits. Subthemes for the intricacy of caring for adolescents with SCD were 1) the psychological tragedy, summarizing the initial caregivers' feelings after the confirmed diagnosis, 2) caregiving hardships that described the caregivers' emotional and health burden while accepting and adjusting to the disease, and 3) the cost of care on families, which highlights the financial burden of the disease on families.<h4>Conclusion</h4>The caregivers of adolescents with SCD experienced several overwhelming challenges, including problems in accessing healthcare and receiving medical services, in addition to influences on the emotional, financial, and social aspects of their lives.https://doi.org/10.1371/journal.pone.0266501 |
| spellingShingle | Khadija Al Saif Fatema Mohamed Abdulla Anwaar Alrahim Sara Abduljawad Zainab Matrook Jenan Jaafar Abdulla Fatima Bughamar Fatema Alasfoor Rana Taqi Amna Almarzooq Jamil Ahmed Caregivers' experience of seeking care for adolescents with sickle cell disease in a tertiary care hospital in Bahrain. PLoS ONE |
| title | Caregivers' experience of seeking care for adolescents with sickle cell disease in a tertiary care hospital in Bahrain. |
| title_full | Caregivers' experience of seeking care for adolescents with sickle cell disease in a tertiary care hospital in Bahrain. |
| title_fullStr | Caregivers' experience of seeking care for adolescents with sickle cell disease in a tertiary care hospital in Bahrain. |
| title_full_unstemmed | Caregivers' experience of seeking care for adolescents with sickle cell disease in a tertiary care hospital in Bahrain. |
| title_short | Caregivers' experience of seeking care for adolescents with sickle cell disease in a tertiary care hospital in Bahrain. |
| title_sort | caregivers experience of seeking care for adolescents with sickle cell disease in a tertiary care hospital in bahrain |
| url | https://doi.org/10.1371/journal.pone.0266501 |
| work_keys_str_mv | AT khadijaalsaif caregiversexperienceofseekingcareforadolescentswithsicklecelldiseaseinatertiarycarehospitalinbahrain AT fatemamohamedabdulla caregiversexperienceofseekingcareforadolescentswithsicklecelldiseaseinatertiarycarehospitalinbahrain AT anwaaralrahim caregiversexperienceofseekingcareforadolescentswithsicklecelldiseaseinatertiarycarehospitalinbahrain AT saraabduljawad caregiversexperienceofseekingcareforadolescentswithsicklecelldiseaseinatertiarycarehospitalinbahrain AT zainabmatrook caregiversexperienceofseekingcareforadolescentswithsicklecelldiseaseinatertiarycarehospitalinbahrain AT jenanjaafarabdulla caregiversexperienceofseekingcareforadolescentswithsicklecelldiseaseinatertiarycarehospitalinbahrain AT fatimabughamar caregiversexperienceofseekingcareforadolescentswithsicklecelldiseaseinatertiarycarehospitalinbahrain AT fatemaalasfoor caregiversexperienceofseekingcareforadolescentswithsicklecelldiseaseinatertiarycarehospitalinbahrain AT ranataqi caregiversexperienceofseekingcareforadolescentswithsicklecelldiseaseinatertiarycarehospitalinbahrain AT amnaalmarzooq caregiversexperienceofseekingcareforadolescentswithsicklecelldiseaseinatertiarycarehospitalinbahrain AT jamilahmed caregiversexperienceofseekingcareforadolescentswithsicklecelldiseaseinatertiarycarehospitalinbahrain |