Abstract
Parenting a child with complex health/palliative care needs is wide ranging. Family-centred practices place parents at the heart of the ongoing care of these children, and therefore it makes sense that their views and experiences should be central to research within the field. Despite this assertion, little guidance exists as to how best to involve parents in research and how to address the subsequent complexities that can emerge following involvement. This paper draws on the experiences of two children's nurses who have carried out qualitative doctoral research studies in child healthcare. Each study involved data collection using in-depth interviews with parents who were caring, or had cared, for their child. One study involved caring for a child with complex needs and the other bereaved parents who had cared for their child at the end of life. Based on the experiences of completing these studies, some of the practical and ethical issues inherent in carrying out research with parents will be discussed. Suggestions on how these issues may be managed by novice researchers will be outlined and pre-emptive strategies will be reported. Issues that can emerge by researchers when accessing the field (A), being in the field (B), closing the relationship (C) and during data analysis and debriefing (D) will be discussed.
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