Fathers’ experiences when their child has been diagnosed with congenital heart disease; a narrative approach
This report relates to the third year of a part time PhD exploring the views, experiences of treatment and care of fathers’ whose child has been diagnosed with congenital heart disease. The scholarship has allowed me to develop my knowledge around research methodology while developing my protocol.
Objectives
- To explore fathers perceptions of their role within the family and wider societal context.
- To examine how this role altered or enhanced by virtue of their child’s diagnosis?
- To explore fathers’ views and experiences of engaging with healthcare professionals during their child’s illness in a range of clinical settings
- To examine how fathers perceive they are viewed and supported by healthcare professionals in terms of the parenting role.
Purpose
- Promote awareness of fathers’ specific needs within the family unit when experiencing healthcare interventions for their child.
- Question widely held healthcare professionals assumptions around the fathers role, needs and level of participation in care.
- Inform wider healthcare practitioners of the paternal role and voice in relation to care across the illness trajectory.
- To enhance nurses and other healthcare professionals understanding of the parenting role of fathers and their specific needs.
- To improve the support available to fathers in clinical practice.
To add to a limited body of research relating to fathers experiences within this specialty.
Project Summary
Congenital Heart disease (CHD) is the most commonly occurring congenital abnormality seen in children and young people. Within the United Kingdom, the incidence is 1:1000 live births with approximately 4,600 occurring annually (British Heart Foundation 2013). Of these 75% will be diagnosed below the age of one with a smaller proportion being detected in the antenatal period or within the first few weeks of life. The difficulty of detecting CHD antenatally is well known and quite often this can also be problematic at birth (Patton and Hey 2006), meaning parents have little or no time to prepare themselves prior to the diagnosis being made possibly following an acute deterioration in their previously well baby. Nine common heart lesions account for 90% of all cases. Of those children born with a congenital heart defect 10 – 15% will have an associated non- cardiac abnormality. Surgical correction will be required in around 60% of all cases. The care of children who have CHD can be complex and require transfer to more specialised facilities often-great distances away from their home environment. Medical and surgical interventions that would not have been possible in previous years are now available ensuring that children survive and flourish into adulthood (Batchelor and Dixon 2012).
Family centred care is an accepted fundamental aspect of children and young people’s nursing practice. However, there is insufficient evidence within the literature to advance children and young people’s nurses and wider healthcare professionals understanding of the needs of fathers within the family when their child has been born with a specific congenital condition namely congenital heart disease.
The project will explore the views of fathers who are parenting a child born with a congenital heart defect to establish their experiences of care provided in a range of clinical settings. Within the available literature, family centred care has been widely discussed but predominantly from a mother’s viewpoint. The needs and views of fathers are distinct and need to be incorporated into the evidence base in order to advance practice. Healthcare professionals often make assumptions about father’s needs and the degree of involvement in their child’s clinical journey therefore; fathers’ needs may not be met.
This qualitative study will utilise a narrative approach to explore fathers’ experiences of various clinical environments and interactions with healthcare professionals in order to provide insight into their specific needs and expectations. Semi – structured interviews will be used to explore fathers’ experiences from diagnosis to definitive treatment. Open-ended questions to gain clarity will guide the interview process (Streubert and Carpenter 2011). The goal is to recruit around 20 fathers to the study. For the purpose of the study, fathers are defined as those with primary caring responsibilities for that child. This could include guardians and non – biological primary carers. These may be experiencing their child’s care at different stages e.g., diagnosis or definitive surgery or interviews make take place across stages of treatment. Ideally, I would want to interview fathers, as close to diagnosis as possible although recognizing that this may prove difficult in terms of access.
The theoretical framework that will be used within the study is social construction theory. Within this theory, individuals are identified as social actors and creators whose roles have developed from societal norms, mother, father brother, sister etc. Within social construction, individuals may feel an obligation to undertake a role that they perceive is the norm rather than having a choice or adopting a favoured position. This is referred to as ‘institutionalisation’ and affects an individual’s expectation of their personal role and identity (Gergen 1994; Nilsen and Sagatun 2015). Incorporating social construction theory as the framework for this study will enable deeper exploration of father’s expectations of their perceived roles and the reality experienced when their child is born with CHD.
I am currently about to submit my research protocol to obtain ethical approval and would hope to be collecting data by spring 2017.