Cardiac pacemakers in paediatric patients: a qualitative study of patient and parental experience

The aim of the study was to explore the experience of having a pacemaker as a child or young person and the experience of their parent in caring for them. Due to lack of research, very little is known about the impact that having a pacemaker has on children and their parents. However, evidence from the adult literature and clinicians’ observations revealed that problems with adjustment can occur. Clinicians have also noted interesting differences in adjustment between families, with some coping well and others experiencing more difficulty. Both children and parents were interviewed because of the importance of systemic influences on children. Also, the literature suggests generational transmission of anxieties and coping styles between parents and children often takes place.

Given the exploratory nature of the study, a qualitative methodology was employed. Eight participants were interviewed (four parent‐child dyads). All the child
participants were aged between 11 and 16 years and had been fitted with a pacemaker. Data were subjected to Interpretative Phenomenological Analysis. The child and parent group data were analysed separately. Three main themes emerged from the child group analysis: identity, coping with having a pacemaker and medicalisation of life. Five main themes emerged from the parent group analysis: guilt, adjustment as a process over time, coping with having a child with a pacemaker, the battle for control and my perception of my child. Each of the main themes consisted of several subthemes further illustrating the
complexity of the participants’ experience. Overall it appeared that despite feelings of threat and anxiety at times, participants used a variety of coping methods to help them adjust to the presence of the pacemaker in their lives. The findings are discussed within the wider literature and clinical implications highlighted.