7.7.1 Using framework analysis to explore parents’ experiences of living with a child with hydrocephalus (189)

Joanna Smith, Lecturer in Children’s Nursing and part-time PhD student, University of Leeds, School of Healthcare, University of Leeds, Leeds, United Kingdom Co authors: Francine Cheater & Hilary Bekker hcsjsm@leeds.ac.uk

Abstract:

Background:

Health policy emphasises the need to involve patients in the management of their long-term conditions (DH 2001). When the patient is a child, understanding the views and experiences of parents is fundamental to enabling this involvement. Hydrocephalus is a condition normally identified in early childhood; the main treatment is insertion of a permanent shunt. Shunt malfunction results in the child requiring surgery to revise the shunt before neurological damage occurs. Parents are responsible for monitoring their child’s condition, identifying the symptoms of shunt malfunction and responding accordingly. There is little research exploring parents’ experiences of living with a child with hydrocephalus, and their decision making about managing shunt complications.

Aim:

To explore parents’ views of living with a child who has shunted hydrocephalus.

Methods:

Cross-sectional interview based study employing qualitative methods
Purposive sampling strategy ensured a range of experiences were represented
Semi-structured interviews were conducted with 15 mothers and 10 fathers
Data analysis was underpinned by the framework approach (Spencer, Ritchie, O’Conner 2003).

Findings and discussion:

The themes that emerge from the data were grouped into 3 key overarching concepts

Becoming an expert
Uncertainty
Striving for normality

These concepts were inter-related and dynamic in nature as parents adapt across the trajectory of the illness, learn through experience, and make decisions about both the family and the child with hydrocephalus.

Conclusion:

The study suggests parents are able to differentiate between symptoms of other childhood illnesses and those that may indicate a shunt problem. However, the decisions about where or when to seek help appear to relate to minimising disruption for the whole family, meeting the immediate needs of the child with hydrocephalus and prior experience of healthcare services.

Biography:

Qualified as a registered sick children’s nurse in 1988 and have worked in a range of acute children’s surgical specialities, complex paediatric surgery, neurosurgery, orthopaedic surgery and plastic surgery, and day care prior to entering nurse education in 1999. Current responsibilities include the management and delivery of the children’s neurosciences modules. Currently undertaking PhD studies relating to childhood hydrocephalus: understanding the experiences of the family living with a child with shunted hydrocephalus, and supporting parents to meet the healthcare needs of their child.