Navigating uncertain illness trajectories for young children with serious infectious illness: a modified grounded theory study
Abstract Background Infectious illness is the biggest cause of death in children due to a physical illness, particularly in children under five years. If mortality is to be reduced for this group of children, it is important to understand factors affecting their pathways to hospital. The aim of this...
| Main Authors: | , , , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
BMC
2022-08-01
|
| Series: | BMC Health Services Research |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12913-022-08420-5 |
| _version_ | 1828149080831819776 |
|---|---|
| author | Sarah Neill Lucy Bray Bernie Carter Damian Roland Enitan D. Carrol Natasha Bayes Lucie Riches Joanne Hughes Poornima Pandey Jennifer O’Donnell Sue Palmer-Hill |
| author_facet | Sarah Neill Lucy Bray Bernie Carter Damian Roland Enitan D. Carrol Natasha Bayes Lucie Riches Joanne Hughes Poornima Pandey Jennifer O’Donnell Sue Palmer-Hill |
| author_sort | Sarah Neill |
| collection | DOAJ |
| description | Abstract Background Infectious illness is the biggest cause of death in children due to a physical illness, particularly in children under five years. If mortality is to be reduced for this group of children, it is important to understand factors affecting their pathways to hospital. The aim of this study was to retrospectively identify organisational and environmental factors, and individual child, family, and professional factors affecting timing of admission to hospital for children under five years of age with a serious infectious illness (SII). Methods An explanatory modified grounded theory design was used in collaboration with parents. Two stages of data collection were conducted: Stage 1, interviews with 22 parents whose child had recently been hospitalised with a SII and 14 health professionals (HPs) involved in their pre-admission trajectories; Stage 2, focus groups with 18 parents and 16 HPs with past experience of SII in young children. Constant comparative analysis generated the explanatory theory. Results The core category was ‘navigating uncertain illness trajectories for young children with serious infectious illness’. Uncertainty was prevalent throughout the parents’ and HPs’ stories about their experiences of navigating social rules and overburdened health services for these children. The complexity of and lack of continuity within services, family lives, social expectations and hierarchies provided the context and conditions for children’s, often complex, illness trajectories. Parents reported powerlessness and perceived criticism leading to delayed help-seeking. Importantly, parents and professionals missed symptoms of serious illness. Risk averse services were found to refer more children to emergency departments. Conclusions Parents and professionals have difficulties recognising signs of SII in young children and can feel socially constrained from seeking help. The increased burden on services has made it more difficult for professionals to spot the seriously ill child. |
| first_indexed | 2024-04-11T21:24:33Z |
| format | Article |
| id | doaj.art-0931213592e6440f824b10cdf3346356 |
| institution | Directory Open Access Journal |
| issn | 1472-6963 |
| language | English |
| last_indexed | 2024-04-11T21:24:33Z |
| publishDate | 2022-08-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Health Services Research |
| spelling | doaj.art-0931213592e6440f824b10cdf33463562022-12-22T04:02:27ZengBMCBMC Health Services Research1472-69632022-08-0122111910.1186/s12913-022-08420-5Navigating uncertain illness trajectories for young children with serious infectious illness: a modified grounded theory studySarah Neill0Lucy Bray1Bernie Carter2Damian Roland3Enitan D. Carrol4Natasha Bayes5Lucie Riches6Joanne Hughes7Poornima Pandey8Jennifer O’Donnell9Sue Palmer-Hill10School of Nursing and Midwifery, Faculty of Health, University of PlymouthFaculty of Health, Social Care and Medicine, Edge Hill UniversityFaculty of Health, Social Care and Medicine, Edge Hill UniversityPaediatric Emergency Medicine Leicester Academic (PEMLA) Group, Children’s Emergency Department, Leicester Royal InfirmaryDepartment of Clinical Infection, Microbiology and Immunology, University of Liverpool Institute of Infection, Veterinary and Ecological Sciences, Alder Hey Children’s NHS Foundation TrustFaculty of Health, Education and Society, University of NorthamptonSupport Services, Meningitis NowMother’s Instinct and Harmed Patients AllianceDepartment of Paediatrics, Kettering General Hospital NHS Foundation TrustHuman Factors and Investigation, London City University, Cranfield UniversityNorthamptonshire Healthcare NHS Foundation TrustAbstract Background Infectious illness is the biggest cause of death in children due to a physical illness, particularly in children under five years. If mortality is to be reduced for this group of children, it is important to understand factors affecting their pathways to hospital. The aim of this study was to retrospectively identify organisational and environmental factors, and individual child, family, and professional factors affecting timing of admission to hospital for children under five years of age with a serious infectious illness (SII). Methods An explanatory modified grounded theory design was used in collaboration with parents. Two stages of data collection were conducted: Stage 1, interviews with 22 parents whose child had recently been hospitalised with a SII and 14 health professionals (HPs) involved in their pre-admission trajectories; Stage 2, focus groups with 18 parents and 16 HPs with past experience of SII in young children. Constant comparative analysis generated the explanatory theory. Results The core category was ‘navigating uncertain illness trajectories for young children with serious infectious illness’. Uncertainty was prevalent throughout the parents’ and HPs’ stories about their experiences of navigating social rules and overburdened health services for these children. The complexity of and lack of continuity within services, family lives, social expectations and hierarchies provided the context and conditions for children’s, often complex, illness trajectories. Parents reported powerlessness and perceived criticism leading to delayed help-seeking. Importantly, parents and professionals missed symptoms of serious illness. Risk averse services were found to refer more children to emergency departments. Conclusions Parents and professionals have difficulties recognising signs of SII in young children and can feel socially constrained from seeking help. The increased burden on services has made it more difficult for professionals to spot the seriously ill child.https://doi.org/10.1186/s12913-022-08420-5Serious infectious illnessIllness trajectoriesParentsChildren under 5 yearsHealth professionalsUncertainty |
| spellingShingle | Sarah Neill Lucy Bray Bernie Carter Damian Roland Enitan D. Carrol Natasha Bayes Lucie Riches Joanne Hughes Poornima Pandey Jennifer O’Donnell Sue Palmer-Hill Navigating uncertain illness trajectories for young children with serious infectious illness: a modified grounded theory study BMC Health Services Research Serious infectious illness Illness trajectories Parents Children under 5 years Health professionals Uncertainty |
| title | Navigating uncertain illness trajectories for young children with serious infectious illness: a modified grounded theory study |
| title_full | Navigating uncertain illness trajectories for young children with serious infectious illness: a modified grounded theory study |
| title_fullStr | Navigating uncertain illness trajectories for young children with serious infectious illness: a modified grounded theory study |
| title_full_unstemmed | Navigating uncertain illness trajectories for young children with serious infectious illness: a modified grounded theory study |
| title_short | Navigating uncertain illness trajectories for young children with serious infectious illness: a modified grounded theory study |
| title_sort | navigating uncertain illness trajectories for young children with serious infectious illness a modified grounded theory study |
| topic | Serious infectious illness Illness trajectories Parents Children under 5 years Health professionals Uncertainty |
| url | https://doi.org/10.1186/s12913-022-08420-5 |
| work_keys_str_mv | AT sarahneill navigatinguncertainillnesstrajectoriesforyoungchildrenwithseriousinfectiousillnessamodifiedgroundedtheorystudy AT lucybray navigatinguncertainillnesstrajectoriesforyoungchildrenwithseriousinfectiousillnessamodifiedgroundedtheorystudy AT berniecarter navigatinguncertainillnesstrajectoriesforyoungchildrenwithseriousinfectiousillnessamodifiedgroundedtheorystudy AT damianroland navigatinguncertainillnesstrajectoriesforyoungchildrenwithseriousinfectiousillnessamodifiedgroundedtheorystudy AT enitandcarrol navigatinguncertainillnesstrajectoriesforyoungchildrenwithseriousinfectiousillnessamodifiedgroundedtheorystudy AT natashabayes navigatinguncertainillnesstrajectoriesforyoungchildrenwithseriousinfectiousillnessamodifiedgroundedtheorystudy AT lucieriches navigatinguncertainillnesstrajectoriesforyoungchildrenwithseriousinfectiousillnessamodifiedgroundedtheorystudy AT joannehughes navigatinguncertainillnesstrajectoriesforyoungchildrenwithseriousinfectiousillnessamodifiedgroundedtheorystudy AT poornimapandey navigatinguncertainillnesstrajectoriesforyoungchildrenwithseriousinfectiousillnessamodifiedgroundedtheorystudy AT jenniferodonnell navigatinguncertainillnesstrajectoriesforyoungchildrenwithseriousinfectiousillnessamodifiedgroundedtheorystudy AT suepalmerhill navigatinguncertainillnesstrajectoriesforyoungchildrenwithseriousinfectiousillnessamodifiedgroundedtheorystudy |