Pathways to resilience in families of children in palliative care

Categories: Care.

Having a child in palliative care does not affect the child patient alone, but rather “the reality is that the whole family is living with the uncertainty of a life-threatening condition” (Together for Short Lives, 2013:21). Listening to families gives a really good insight into the supports that help families cope.

Building resilience is a unique process for each family and there many different ways that it can be achieved. I am going to share seven things that are important in helping families find their own pathway to resilience. These seven factors are not a model or a process- they are seven examples of things demonstrated over and over again by families and in research to be important for coping.

1. The benefit of social support must not be underestimated. Social support networks are consistently linked with positive coping in families. Support might be face to face, over the phone or online. It might be with peers or professionals, or hopefully a mix of both. Not feeling alone is really important to families.

2.  What counts as useful social support is different for every person in a family. I’ve seen that some people want to connect with others that understand what it’s like. Some find it more comfortable to accept practical support from friends. Others find humour helpful when coping with the darkest of times. Some siblings like to share what is going on with school friends whereas others use school as a form of escape- somewhere they can be ‘normal’. In fact all people need altering combinations of these different types of support at various points in their journey.

3.  Family stress can be eased by developing and maintaining a good care-share routine. If there are two parents or carers, how does each get a break? How does one signal to the other that they need a break? How does a single parent get a break? How do siblings get to spend some time one-to-one with their parents? Supporting families to agree on answers to these questions helps them develop a routine to meets everyone’s needs as best as possible. Having an awareness of available social support networks can be useful when thinking about how this could work.

4. Talking about the ‘what ifs’ makes coping with the unpredictable easier. What happens to this care-share routine if the ill child suddenly goes into hospital? Or if the child’s condition deteriorates and the caring responsibilities change? When things change the family needs to adjust. Working preventatively to create ideas about how this adjustment could work eases the process of reacting at the time. Opening up conversations with families about ‘what if this happened?’ helps families plan for the future.

5. Making the most out of time NOT spent focusing on caring or the illness is really important. Some breaks need to be away from the family and the challenges they face. It is also important to still spend time together as a family; enjoying each other without focusing on the illness. Getting families thinking about what they enjoyed doing together before the illness can be helpful. Be creative. If the family is going to work together whilst experiencing stress and emotional pain they need to be dedicated to each other, so time spent working on family relationships is vital.

6. Hope and remaining positive is the most important thing for many families. Families retain hope by imagining how their life could be different in the future, and thinking about families less fortunate than themselves. This does not necessarily mean that they don’t accept or understand that their child may die or deteriorate, and honest conversations with families can shed light on the beliefs behind the hope.

7.  Families work better together when they understand each other. Every person in a family has thoughts and feelings about the life and death of their child, and beliefs about the impact of having a poorly child on them. Every person has expectations, hopes and fears about the future. These beliefs will affect the decisions people make during difficult conversations. Supporting families to share their thoughts enables people to understand and appreciate each other’s point of view- the first step towards working together.

Rise Shemilt is a Paediatric Palliative Care Social Worker at The Gaddum Centre and can be contacted at


Together for Short Lives (2013). A Core Care Pathway for Children with Life-Limiting and Life-Threatening Conditions. Third Edition. Bristol: Together for Short Lives.

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