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“Me and palliative care”: autobiographical narratives of a nursing team in a paediatric palliative care unit

Valdimir Kush - Haven

Valdimir Kush – Haven

We host the project work by Loredana Celentano, Anaesthetist, participant to the IV edition of the Master in Applied Narrative Medicine at ISTUD Foundation.

Paediatric palliative care

The World Health Organization (WHO) defines Paediatric Palliative Care as the active total care of the child’s body, mind and spirit, also involving active support to the family, with the aim to improve the quality of life of young patients and their families at home, which represents the ideal place for assistance and care.

Yet in Italy this kind of assistance is mostly supplied – even improperly – in hospitalization regime, sometimes in units of intensive care.

More than in other situations, in this kind of assistance nurses’ role is fundamental: they take care of patients and their families for 24 hours for day. The emotional and moral distress is one of the most important risks for professional nurses: it may appear as anger, frustration, sense of guilt, loss of self-esteem, depression, resentment, sadness, anxiety, inability to help and sense of impotence. Taken together, all these factors influence the satisfaction on work, motivation and psycho-physical wellbeing, leading nurses to burnout syndrome.

Few months ago at the Department of Paediatric Oncohematology of the Hospital “Santobono-Pausilipon” has been activated the residential structure “Alma Mater”, dedicated to the assistance of children affected by terminal cancer. This structure is managed by a dedicated team involving two medical directors, eight paediatric nurses, one psychologist. The assistance takes place on a 24-hour shift, and is completely entrusted to the nursing staff with the support of medical availability.

The project “Me and palliative care”

The project aimed to collect experiences narrated by nurses dedicated to hospice care. This idea came from the need to assess emotional and stressful aspects involving professionals in this kind of assistance, and to measure the burnout level in the group, in order to subsequently identify any necessary support action adequate to maintain the well-being of the staff.

The project took place from April to June 2016 as part of the Master in Applied Narrative Medicine at ISTUD Foundation, and provided for the involvement of all the eight nurses working in hospice care.

In a first phase, we collected eight semi-structured narratives, subsequently integrated with other five narratives collected in an early “pilot” stage, without a predefined grid. The second phase of the project involved the administration of a validated qualitative tool used to assess the operators’ burnout level, the Maslach test. The tests were crossed with the analysis of narratives, in order to conduct an assessment of the degree of stress present both in the individual operators and in the whole team.

The indicators used for the analysis were the experiences of nurses in assisting young patients and their families, any expressed critical or positive element in care relationship, and the influence of these elements on the entire team.

Nurses’ narratives

The uniformity of collected narratives is one of the first elements emerging: it already appears in the narrative style, mainly didactic, with a sometimes technical (disease-centred) language.

According to transactional analysis, we see a prevalence of Adapted Children, that is people carefully working, but that sometimes become Submissive Children because of the sensations of defeat and impotence in front of the inevitability of events. Nurses reveal an important affective side (proper of the Affective Parent) for patients and families. The Adult state seems less developed, probably for the young age of nurses, all of them at the start of their career.

In my daily practice I try to be as I would like others to be with me, paying special attention to the defence of human dignity. I know I can’t figure out how mothers and fathers feel experiencing this hospital, but I try to help them. We don’t study on books what we daily face, many times you are alone in facing a new strong experience.

You realize how important is your presence in certain moments, not for giving a therapy or doing some procedures, but simply for shake a hand, listening to a vent or giving a hug.

A positive element is the team work, based on mutual support, together with the gratification from the relationship with families, often very grateful to professionals.

I have a good relationship with everyone and I’m satisfied: if team works, works also the rest.

Despite the extreme peculiarity of my work there are many little things that make me satisfied: the complicity with mothers, the gratitude they show, the smiles of children that you can see, despite all.

However, there is a hidden sense of impotence for a context difficult to accept and face:

I was feeling impotent, I could do nothing more to save a little soul, and I was feeling bad because I couldn’t do anything for a child: I was feeling impotent in front of so much suffering.

When I start my shift, I feel impotent.

Despite the emotional and working burden, narratives are progressive: we can notice in them a positive and enthusiastic vision of the professional future of professionals, revealing the willingness to go on and professionally grow in this specific and delicate career.

The start of my working career was like falling in love: falling in love with a profession focusing on the Other and his/her needs. I received a lot in giving, and my choice for palliative care was precisely born from this necessity to invest in feelings, putting them at the core of my activity.

I’m enthusiastic I have better known this world: I have had the possibility to test myself, to improve my experience and reinforce my certainty to be born to do that! I wish to carry on my profession in the sector I have always lived, loved and chosen.

Results from the Maslach test show a low risk of burn out, especially in interpersonal relationships and with patients. On the contrary we can notice a greater risk of stress linked to the unstable professional situation.

Narrative as a support tool

From this experience, professionals emerge as very motivated, but even scared by the requested task, most of all from an emotional point of view. Narrative revealed to be the appropriate tool to sustain and reinforce the team, letting emerge the Adult of operators: it allowed to express freely, debate and improve the awareness of the team. A good habit that must not be abandoned!

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Written by

Degree in Natural Science at University of Turin, Italy. Project Manager and trainer at ISTUD – Health Care Area since 2010. Expert in health care organizational research and in the approach with Narrative Medicine, applied to national and international projects to analyse the organization and quality of pathways of care. Coordinator of training programmes ECM accredited (Continuous Medical Education system) addressed to health care professionals, as trainer and tutor. Coordinator of European projects, Lifelong Learning Programme funded, with a specific focus on storytelling. Collaboration with the Italian Society of Narrative Medicine and with international universities. Participation as speaker at several congresses promoted by scientific societies and Health Authorities.

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