The lived experiences of hospital for parents of children commenced on invasive long-term ventilation

Recent years have seen a significant increase in the number of ventilator-dependent children being discharged from the hospital. There is a wealth of literature describing the issues surrounding the complex discharge process required for these children however there has been limited exploration of the experiences of parents during their child’s admission to hospital. Interpretive phenomenology based on Heideggerian research philosophy was used to explore the lived experiences of hospital for parents of children commenced on invasive long-term ventilation (I-LTV). Purposive sampling was utilised to select parents of children who had been cared for at one NHS hospital trust. Eight in-depth, unstructured qualitative interviews involving sixteen parents (eight couples) were conducted over a six month period during 2014 to gather data about the parent’s recollections of the time spent with their child in hospital. Most children were cared for on both the paediatric intensive care (PIC) and high dependency units (HDU) with the majority having been discharged from hospital at the time of the interviews. All interviews were transcribed verbatim, and analysed using a modified van Manen (1990) approach. Thematic analysis provided an insight in to the lived world of the parents caring for their technology-dependent child, with two over-arching concepts of uncertainty and transitions characterising the parents’ journeys. The findings revealed multiple transitions in a world of complexity and uncertainty with four main themes emerging from the data; 1) Going in to the Unknown, 2) This wasn’t what we wanted, 3) Safer at Home, and 4) Clawing every little bit back. Parents were required to develop coping strategies to deal with the transitions and uncertainties experienced and establish new roles and identities as they became experts in caring for their technology-dependent child. As a result of the findings a new framework combining the concepts of uncertainty and transitions was derived identifying areas for consideration including: health-illness, psycho-social, situational and developmental transitions together with existential, biographical, environmental, relational and temporal uncertainties. Strategies for facilitating coping and adaptation towards healthier outcomes were identified and a strong argument emerged for the development of more effective management of transitions and uncertainty delivered within an environment more conducive to family-centred care.