Authors: Silvia Elena Rivas de Verdugo and Ana Gabriela Paz Sandoval National Paediatric Oncology Unit. Guatemala
Courtesy of Paliativos Sin Fronteras/Palliative Notes Magazine 2021.
Currently, science provides tools to generate mental health promotion programmes for children and adolescents. Reviewing them and taking them into account is necessary for the integral approach of the paediatric palliative patient who, due to the suffering of a chronic non-curable illness, may present symptoms of emotional and behavioural vulnerability, without necessarily suffering from a psychiatric illness.
Paradoxically, health personnel themselves often tend to relegate mental health to the background, which leads to neglect of comprehensive care, with erroneous approaches and strategies for dealing with the manifestations of emotional and behavioural conditions.
New discoveries in neurosciences show that quality of life begins with emotional and behavioural health, requiring the creation of healthy environments. This implies the importance of treating not only the child but also the family unit, as it is known that the environment influences genomic health which, in turn, mediates brain structure and function, ultimately affecting thoughts, feelings and behaviours.
Learning to live with the mental and emotional challenges of a non-curable illness is difficult for children and adolescents, and each person’s ability to accept and adapt is a combination of characteristics related to age, coping skills, past experiences, culture, religiosity and learned behaviours, but can also develop from external factors such as psychosocial and health support. On this basis, the following aspects that can help to provide adequate mental health care for the paediatric palliative patient are highlighted:
- The first is to educate parents and health care personnel in the early detection of warning signs of depression, anxiety or some kind of adjustment disorder. It is necessary to make them realise that children and adolescents in palliative care may show irritability, apathy, aggressiveness, sadness, sleep problems, anxiety, pain, which, despite a good pharmacological approach, persist and may be an indication of a psycho-emotional condition, since the traumatic experiences they face while hospitalised, subjected to multiple procedures and treatments, have an impact on the way they perceive their well-being and how they construct their reality based on the disease.
- A second step is to develop health education programmes for children and adolescents, in which they are taught about their illness, symptom management, the role of procedures and medications, to ensure adherence and reduce suffering. The greater the knowledge and understanding of the disease, the more committed children and adolescents are to their health care and adherence to treatment. In addition, this helps to mitigate distress, improve communication with parents and avoid the conspiracy of silence.
- A third aspect to work on with the family and the paediatric patient is the subject of death, which is not alien to the fears of children and adolescents. It is often a taboo subject that neither parents nor health personnel want to address. Talking about this subject helps paediatric patients to confront their illness, to generate mechanisms that help them to deal with the finiteness of their existence, allowing them to be spoken to in accordance with their age and condition. On the other hand, it also helps parents and relatives to prepare themselves, to build a healthy psycho-emotional system to cope with the situation and to be able to support their child in the best way possible.
Having a mental health programme for the patient and their family can be of great benefit in order to make timely referrals to mental health specialists, prevent psychiatric manifestations, and avoid complications that deteriorate the quality of life of the child or adolescent and their family.
Undoubtedly, this is an issue that cannot be left on hold in paediatric palliative care; it is necessary to get to work and propose guidelines for mental health care, in order to provide an integral quality of life.