Social and Emotional Support
The impact of a life-limiting illness on a child or young person and their family is complex, powerful and challenging for everyone involved in their care. The physical, emotional, psychological and spiritual needs inherent in the situation require thoughtful and compassionate responses from the professionals involved in the care of the patient and their family. A co-ordinated interdisciplinary approach ensures the best opportunity to address these needs.
Some of the psychosocial issues that may arise in Paediatric Palliative Care include:
Health History for Patient & Family
Previous experiences of ill health, the medical system or loss can either support or hinder a family to deal with the current crisis.
Family structure and dynamics
Given the powerful impact a life-limiting illness has on a family, any conflicts, unresolved issues or fears that exist in the family structure are likely to be exacerbated leading to increased stress for the family. There is also the possibility of resolving some of these issues with the proper support. Similarly any strength within the family structure can be harnessed to deal with the crisis and ongoing challenges.
Families often struggle with not knowing who to tell and what to tell them when faced with a life-limiting illness. The need for supports outside of the family is vital, but given the often all-consuming nature of a life-limiting illness there may not be as much time to maintain friendships. This can be another source of stress for a family.
The school community plays an important part of supporting the child or young person and their family. Staff at the school need to learn how to provide the specialist supports the child or young person might need, and also to understand that there may be long periods of absence due to ill health or challenging behaviours to manage at school due to the child or young person’s reaction to the limitations their condition places on them.
Finances/Income & Housing/Accommodation
Caring for a child with a life-limiting illness may mean that a parent needs to leave a job to care for them, or work significantly fewer hours. This can have an impact on both quality of life and even meeting the basic needs of the family. New accommodation may also need to be found to meet the changing physical needs of the child or young person.
Spiritual/Religious Beliefs & Supports
In trying to make sense of why a child or young person has a life-limiting illness, and to find meaning in the challenges and struggles, a family may question long-held beliefs or search for answers in new and different ways. Alternatively pre-existing religious and spiritual beliefs may be a major source of strength and support for family members, as may religious communities.
Each member of the family will also face their own unique challenges. Some of these would include:
The child may need to deal with being sick, not being able to participate in life in the same way as siblings and friends, not reaching milestones, and their early death. As a result of these they may face challenges with other family members, at school and with friends. Also they may develop in positive and unexpected ways through the experience.
Parents will face watching their child deal with sickness, and see them struggle with coping with all of the above. They will also have to face the early death of their child, and what this means to them and their family. They may struggle with guilt, fear, anger and/or denial. They may lose friends, jobs and/or relationships. They may also grow in ways they never expected and meet all of these challenges with courage and love.
Siblings may find themselves receiving less time and attention due to their sick sibling, and may struggle with many emotions around this. They may have to face the questions of sickness and death that their peers have yet to deal with. They may try and protect their parents, or save their brother or sister. They may take a powerful and loving role in the care of their sick sibling.
Grandparents face not only watching their grandchildren being sick, and their early death, they also have to watch their children’s grief and pain. They may take an active role in the care of the child or young person, and this may have an impact on their own health. They may also find a new strength in caring for all of their family through this trying time.
These are just some of the ways that issues can impact on families that have a child or young person with a life-limiting illness. In all cases careful, ongoing assessments are needed to inform the care that each member of the family might require at any time.