Brothers and Sisters: Reaching Out and Holding Hands Erica Brown Vice President Acorns Children’s Hospices

When a child is diagnosed with a life- limited illness everyone is plunged into a confusing and previously unknown world. Normal routines are shattered and relationships are turned upside down. Brown, Erica. (2007) Supporting the Child and the Family in Paediatric Palliative Care. London: Jessica Kingsley.

Family members are inter-dependent. Anything that affects one member will affect the family as a whole.

The reality is that the whole family is living with a life-threatening condition and all the demands and painful experiences that come with it. (ACT, 2004)

Brothers and sisters of life-limited children The environment in which brothers and sisters are growing up is far from normal. Sibling grief is without specific paths – grief is not expressed in neatly ordered stages. Inter-related factors such as the child’s individuality, family structure and home environment will impact on how siblings grieve. Siblings often take on more responsibility in families than they can comfortably manage. Grief is particularly acute when a sick sibling is suffering from a genetic disorder.

Children’s Responses Although it is unwise to assume that all siblings of life-limited children will demonstrate the following responses, many children will show: emotional responses – sadness, anger, disbelief, shock. physical responses - digestive disorders, exhaustion, sleep disorders, incontinence. cognitive responses – denial, preoccupation with death, confusion. behavioural responses- regression of previously mastered skills, withdrawal, over-sensitivity to noise.

Talking About Dying Children and young people often find this easier than adults do. The creative and expressive arts often enable children and young people to explore their ideas and their worries in a safe way.

Sibling Emotions Many factors overlap and interplay creating a complex array of emotions. Often siblings are unable to sustain the intensity of their emotions for long periods of time. Gender differences are apparent. Psycho-physiological responses are apparent.

Situational Factors How siblings cope will depend on: The duration of the sibling’s illness. The type of the sibling’s illness. How much siblings are included in the family situation. The cultural or faith perspective of the family.

Environmental Factors How siblings cope will be affected by: The physical environment of the family home. How the family communicates. Parental adaptation to the situation.

Sibling Resilience There may be a danger of assuming all siblings of life-limited brothers and sisters will experience complicated grief. The research clearly indicates some siblings view themselves as more caring and sensitive as a result of their experience. Some sibling coping strategies are transferable to other areas of sibling life.

Caring for families means standing alongside people who are often travelling in uncharted territory and allowing them to pace their grief and to set the agenda for their care.

“ Those who listen day after day to people’s pain are part of a healing process. Pain is part of what it means to be human and sharing the pain is a deeply human task.” (Sheila Cassidy - Good Friday People)

Caring for Ourselves Accepting our own life experience and understanding how this impacts on us Celebrating our own identity Identifying our strengths Drawing from sources from outside our home and our workplace to support us when the need arises Taking care of ourselves physically, mentally and spiritually.

Four Corners In every situation there are four corners. As a teacher, I give you one corner. It is up to you to find the other three. (Confucius)