A Network for Accessible, Sustainable, and Collaborative Research in Pediatric Palliative Care PedPalASCNET

Children, Families and Pediatric Palliative Care Research

Pediatric palliative care refers to the care provided to children with life-threatening, progressive conditions. This care may focus on: providing comfort; managing pain; prevention and treatment of symptoms; and any other interventions that will contribute to improving the overall quality of life of the ill child and his/her family during the illness and in the family’s bereavement. The research conducted by the PedPalASCNET group is focused on the discovery of information and evidence that will help to improve the practice of pediatric palliative care, with the aim of improving quality of life. Furthermore, PedPalASCNET does not only focus on the care of the ill child, but also on the child’s family, with the hope of making this difficult time just a little bit easier. Without the contribution of the children and families, research in pediatric palliative care would not be possible.

Children in Pediatric Palliative Care Research

Our research focuses on children (0-19 years) with life-threatening conditions and is inclusive of peri-natal and neonatal palliative care. We are interested in studying the bio-psychosocial-spiritual symptoms of the child at the point of diagnosis and throughout the trajectory of the illness.

With regards to life-threatening conditions, we know that:

        • Life-threatening conditions are often progressive, rare and complex.
        • Little can be done to stop or slow the disease and treatment is often focused on prevention and relief of symptoms, as well as addressing emotional, social and spiritual symptoms.
        • Cancer remains the most common cause of illness in children.
        • While less common, pediatric palliative care is also beneficial for children who have neuromuscular, metabolic or neurodegenerative diseases, severe neurological impairment, gene-based and multi-organ conditions.

Our research does not focus on any one condition or cause of illness but seeks to provide information relevant to the practice of pediatric palliative care. In some instances, we have utilized the four quadrant model developed by Association for Children with Life-Threatening or Terminal Conditions and Their Families (ACT) (now Together for Short Lives) to classify the conditions of children in pediatric palliative care research.

Association for Children with Life-Threatening or Terminal Conditions and their Families (ACT), Royal College of Paediatrics and Child Health: A guide to the development of children’s palliative care services. London: Royal College of Paediatrics and Child Health, 2 2003.

Research with these children is important because:

        • Many of the conditions are rare and as a result, lack dedicated funding for disease-specific research.
        • The conditions that affect children differ to those that affect adults; pediatric palliative care differs to adult palliative care. Historically, palliative care research has focused on adult patients. We need to continue to build on our knowledge and evidence base in pediatric palliative care.
        • While cures for these conditions have not yet been realised, there is great potential to enhance comfort and quality of life through care. It is important to describe what this care looks like.
        • The illness will invariably have an impact on the child, the child’s family, community, teachers, health care providers, and school friends. Research is needed to provide knowledge on how to best support this group.

What we hope to gain from our research with children:

        • An understanding of best practices in the care of children with life-threatening conditions.
        • An ability to describe the experiences of children with life-threatening conditions.
        • Knowledge and evidence to support positive outcomes for children with life-threatening conditions.

Children in pediatric palliative care are at the centre of our research. The children tell us, in various ways, which interventions have positive effects and which interventions do not. The information gleaned from the children in our pediatric palliative care studies are invaluable to our research, and better enables us to provide information and evidence to healthcare providers and families, with the aim of improving care.

Families in Pediatric Palliative Care Research

Our research does not only focus on the care of the child, but also the management of the bio-psychosocial-spiritual impact on the family and community during a child’s illness and after the loss of a child.

With regards to families, we know that:

        • A life-threatening illness in a child will impact significantly on the child’s family.
        • The negative impact on families has been well documented but less is known about the growth that may occur.
        • Families make decisions (often difficult) for their ill child and as a result, play a major role in the interventions provided to the child.
        • Families are an important aspect of the child’s treatment and play a major supporting role.
Our research is interested in the trajectory of families from time of diagnosis of the sick child, through to bereavement. We work towards providing relevant information for each stage of caring for a child with a life-threatening illness. Our research is not limited to the study of primary caregivers as we are also interested in the experiences of siblings and other self-defined family members.Our interest in parents and families is two-fold. We are not only interested in the role parents and families play in the treatment, support and decision making for the child with a life-threatening condition, but we are also interested in the experiences of the parents and family. As such, families contribute significantly to our research by:
        • Sharing their experiences of caring for and living with a sick child.
        • Describing the positive and the negative impact of their experience.
        • Describing their needs in terms of support and information to make this difficult time a little bit easier.
        • Acting as a voice for those children that are non-verbal or unable to communicate.
        • Providing feedback and guidance on our research through the Family Advisory Committee and other forums.
        • Providing feedback on the impact of their participation in our research.

We hope that our research will allow us to:

        • Better describe positive and negative experiences of living with and caring for a child with a life-threatening condition.
        • Better describe the type of support that families need and would like to receive.
        • Better understand the impact of participating in our research.
        • Better understand how to best conduct research with children and families in pediatric palliative care.

We will continue to engage families to ensure that we are asking the right questions and providing the right information to make this difficult time a little easier.

If you are a family who is caring for a sick child, and would like to become involved in research, please see our page on current research or contact PedPalASCNET.

THANK YOU TO THE CHILDREN AND FAMILIES THAT CONTRIBUTE TO PEDIATRIC PALLIATIVE CARE RESEARCH

 

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