“You’ve only got one chance to get it right”: children’s cancer nurses’ experiences of providing palliative care in the acute hospital setting

Abstract

The aim of this study was to understand children's cancer nurses experiences of providing palliative care in the acute hospital setting. Palliative care for children with cancer is rarely hospital- centred and predominately care is provided in the community or hospice setting. Vast research has looked at the experiences of children's nurses providing palliative care within the child's home environment or the hospice. This research has suggested that nurses need adequate support to avoid stress and burnout. Parental views focus on the nurses attributes as opposed to the clinical skills which are required. This research study wanted to ascertain whether specific educational preparation or support is needed to prepare children's cancer nurses in providing palliative care in the acute hospital setting. The research study used a qualitative approach with semi-structured in-depth interviews across three primary treatment centers within the United Kingdom that provide cancer care to children. Data were collected and analyzed using a phenomenological approach. Data were collected between October 2011 and February 2012. Interviews took place in the participants preferred location and lasted between 45 and 60 min. Data were analyzed using the Strauss and Corbin method. Five themes emerged which were "lack of a plan", "managing the symptoms", 'family", and "experience". Categories within these themes were devised from participant narratives. The findings of this research study suggest nurses need specific palliative care education not only at pre-registration level but also continuing professional development.

Healthcare staff ’s experience in providing end-of-life care to children: A mixed-method review

“…6 This was exacerbated by parental distress in relation to withdrawing treatment. 11,33,37,45,46 Nurses reported experiencing extreme moral distress and anxiety when families insisted on continuing interventions that they recognised were not in the best interests of the child. 11,45,46 Keeping silent.…”

“…A range of staff, including doctors, nurses, social workers, psychologists, and physiotherapists all reported feeing anxious when talking with parents about death or using the word 'dying'. 26 Both doctors and nurses reported feeling at a loss for words, 9,44,45 and as a consequence often avoided talking to parents. 9 Children's cancer nurses working in an acute hospital setting rated communication with parents as the highest perceived obstacle when providing endof-life care to children.…”

“…Studies were predominantly qualitative (n=18), 6,11,26,28,30,[31][32][33][34][35]37,39,41,43,[45][46][47][48] with a smaller number of quantitative (n=6) 21,25,27,32,38,42 and mixed-method studies (n=8). 5,9,12,29,31,37,40,44 Five quantitative studies were cross-sectional, and one used a pre-post survey design.…”

“…The majority of studies were conducted in the USA (10) 5,25,[29][30][31][32]35,[40][41][42] with the remaining 21 studies carried out in the United Kingdom (6), 11,12,43,45,47,48 Canada (3), 21,37,39 Australia (2), 27,34 Poland (1), 38 Greece (1), 44 Greece and Hong Kong (1), 9 Sweden (2), 6,33 Ireland (2), 28,47 Finland (1), 36 and Switzerland (1). 26 The majority of studies considered nursing staff only (15), 9,11,25,27,30,[32][33][34][35][39][40][41]45,47,48 while others con...…”

“…5 The majority of studies were conducted in a hospital setting (22). 5,6,9,21,[25][26][27][28][29][30][31][32][33][34][35][36][37]39,40,42,44,45 The remaining studies were conducted across a range of settings such as hospital, hospice and community (3), 11,23,41 community only (4) 38,43,47,48 or hospice only (1). 12 A summary of the aims, sample, setting, design and relevant findings from included studies are presented in Table 2.…”