Clinical realities are sometimes very complex, and they require asking research questions which present major methodological challenges and ethical questioning. Our daily work as nursing professionals in a Paediatric Intensive Care Unit (PICU) will make us face the reality of infant death and the suffering of children and their families. According to data from the National Statistical Institute, 2,057 <19-year old patients died in Spain during 2018, with an average PICU mortality rate of 4% . Some of these deaths had traumatic causes or were due to accidents or acute conditions. However, 75% of them were caused by chronic conditions (disabling and/or life-threatening diseases) associated with a significant disability, and the manner of death was linked to the adequacy of therapeutic effort (1).

In this context, palliative care and support for families in the ICU become essential, and require consensus, planning and coordination. The benefits of palliative care in the PICU and Neonatal Intensive Care Units (NICUs) are highlighted in literature, but there is a limited number of publications, and the quality of evidence needs improvement. Recent research studies have evaluated the implementation of Palliative Care Programs in the NICU (2), highlighting the benefits of some interventions such as an early management of symptomatology and conducting multidisciplinary meetings to discuss matters such as end-of-life care and shared decision-making. The need to train staff in palliative care and end-of-life care is also stressed, as well as to create clinical practice guidelines where palliative and curative approaches can coexist, and to continue working with new lines of research actively including families (3).

However, how can you conduct care from an approach focused on the person / family if not from their own subjective experience? What is the evidence regarding this? Are there any studies evaluating different interventions for care and support for children and their families? And if any, on the basis of which evidence have these interventions been planned?

The reality is that there is not enough evidence providing robustness for planning a support process of excellence. It is certain that support represents an experience loaded with suffering, which is frightening and causes withdrawal. But it is uncertain whether to ask families about their experiences could have adverse consequences upon them and the researchers. However, giving a voice to those most vulnerable in order to illuminate and make their processes visible would encourage better care. To avoid research about painful and uncomfortable matters, but which are also essential and decisive, could be considered irresponsible. Therefore, it is necessary to make visible a population in an extreme situation of vulnerability, such as parents who have lost a child, and sensitive and delicate matters such as death or mourning. However, addressing these requires exquisite care to prevent placing them in a situation of risk (4).

Excellent and individualized care, focused on the needs perceived, requires evidence generated through qualitative research under a constructivist paradigm. That is to say, research which provides a holistic approach to researchers, through addressing the comprehension of the phenomenon studied based on their discursive voice. In this sense, risk management will be essential, forcing the researcher to become aware from an ethical point of view, and to commit to a highly sensitive research; that is to say, this is a research process which represents a potentially significant threat for those who are or have been involved in it (researchers and participants). Summing up, conducting sensitive research involves taking maximum care of the protection of participants, ensuring their safety at all times, minimizing their exposure to risk factors, and guaranteeing the lower emotional impact possible (5).

However, would it be ethical to conduct research with families who have lost a son or a daughter? Or on the contrary, is it amoral to exclude them from the area of knowledge, with the subsequent direct impact on the area of care and scientific advance? It is considered necessary for said population to benefit of advances in care and treatment, and therefore it is essential to have first-hand knowledge regarding their experience in losing a child, in order to address the special characteristics around their death in Intensive Care, with the objective of improvement. Therefore, it is always considered that the potential benefits of research will exceed any potential risks. But how should research be addressed in order to guarantee the safety of participants?

Firstly, there must be maximum respect and care regarding mourning times and the manner to approach reporters, in order to ensure participation with enough safety to protect the wellbeing and comfort of families. Approaching them will require active listening, empathetic communication, an adequate management of silences and latency times, and an appropriate emotional work (6). In order to ensure the emotional protection of participants, there should be an evaluation before the interviews to confirm that the first mourning stages have been resolved, that is to say, the acceptance of the reality of loss and the processing of emotions and the pain caused; therefore, recruitment and conducting interviews should be avoided during key dates and anniversaries for the families, or during a situation of potential pathologic grieving.

The preferences of reporters must be respected regarding data collection; they should be the ones to decide when, how and where to conduct the interview, and they must explore their experience on their own terms, orientating the flow of their discourse, and feeling free to delve or not into specific areas (6). To prepare an interview script with standard questions can support the interviewer and ensure a careful management of the interventions for clarifying, delving into or redirecting the matter, and at the same time to have certain control regarding the areas with higher emotional sensitivity and the routes to reach them. It is advisable to develop an emergency plan in case that, regardless of meticulous care, complex emotional situations should present, and to know how to manage a potential referral in cases of maladaptive mourning.

Another enabling factor for interview development is to approach reporters from the helping relationship model, that is to say, based on the unconditional acceptance of the person or positive consideration, empathy and authenticity, and genuineness or consistency, understanding the interview as a dialogic relationship of support to explore and share their own experience. This should be understood basically as a relationship of care, because it involves active listening and presence. However, the research objective of the interview must be made clear, as well as the roles played by each person (reporter and researcher). Likewise, after conducting each interview it is recommended to follow-up the participants through messaging or call, in order to ensure that they are well after having shared their experience (4). Besides, spaces for reflection must be provided for researchers, allowing self-criticism and the detection of areas for improvement, as well as self-testing and emotional support.

The final conclusion can be that care of excellence in such controversial matters originates from sensitive research, always with help by those involved, protecting, acknowledging and looking after the most vulnerable participant in these research processes. This will lead to researchers making a firm commitment to successfully conduct studies with this major emotional burden, which in some way involves facing with courage the approach for these research studies, with the objective of finding the way to provide excellent care. .