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Postsepsis Care Needs in Children and Families: Single-Center, Codesign Qualitative Research From Western Australia
Natalie J Middleton1, Kathleen Anastasas1, Joanna White1
1Child and Adolescent Health Service Sepsis Program, Perth Children's Hospital, Nedlands, WA, Australia.
Insights
Children with sepsis and their families need coordinated, individualized follow-up care after hospital discharge. This includes ongoing clinical support and better communication across health and education sectors to manage the life-altering impacts of sepsis.
Area of Science:
- Pediatric critical care medicine
- Child health outcomes
- Family-centered care
Background:
- Sepsis in children is a severe illness with lasting psychosocial and physical effects on patients and their families.
- Current postsepsis care services in Western Australia require development to meet identified patient and family needs.
Purpose of the Study:
- To explore the needs of children and parents following hospital admission for sepsis.
- To inform the development of a specialized postsepsis care service in Western Australia.
Main Methods:
- A qualitative study co-designed with parents of children with sepsis experience.
- Interviews and focus groups conducted with 15 parents and 23 healthcare/education professionals.
- Data analyzed using inductive descriptive thematic analysis.
Main Results:
- Two major themes emerged: 'the impact of sepsis' and 'supportive care after sepsis'.
- Sepsis profoundly impacts multiple aspects of family life, requiring individualized support, communication, and follow-up.
- Key needs identified include coordinated, holistic care across sectors and enhanced information/resource provision for families.
Conclusions:
- Postsepsis care requires coordinated, individualized follow-up and ongoing clinical support for families after hospital discharge.
- Addressing the complex needs of children and families postsepsis is crucial for recovery and well-being.
Objectives:
Sepsis, for children and their parents, is a life-altering illness with far-reaching psychosocial and physical impacts. We aimed to explore the needs of such patients and their parents after hospital admission for sepsis to inform the development of a Western Australian postsepsis care service.
Design:
Qualitative study codesigned with four parents of children with personal experience of sepsis, which involved audio recording of interviews and focus groups of parents and healthcare and education professionals.
Setting:
Perth Children's Hospital, Western Australia.
Patients And Participants:
Over a 2-month period in 2024, 15 parents of children who had recovered from sepsis were interviewed; four parents participated in a focus group. There were also 23 healthcare or education professionals who participated in two focus groups.
Interventions:
None.
Measurements And Main Results:
The audio-recorded focus groups were transcribed verbatim, anonymized, and analyzed using inductive descriptive thematic analysis. Across both groups of participants, two major themes and six subthemes were identified. The major themes were "the impact of sepsis" and "supportive care after sepsis." The impact of sepsis varied between individuals with the potential to affect multiple aspects of family life. Parents highlighted the profound psychosocial and physical consequences of sepsis, emphasizing the need for individualized support, communication, and follow-up after discharge. Professionals outlined gaps in current postsepsis care practices and suggested additional support measures for children and their families. Care coordination, described as a holistic, cross-sector healthcare model, was identified as a key need to ensure seamless collaboration across health, education, disability, and community sectors, while providing families with education, information, and resources.
Conclusions:
This follow-up study of parents and healthcare or education professionals identified that in postsepsis care there is a need for coordinated, individualized follow-up, with ongoing clinical support for families after discharge.
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