• Children communicate differently and, depending on their stage of development, have a different understanding of illness, death and dying. A child's concepts of illness and dying continue to evolve over time and develop in association with life and illness experience. A child's understanding of death is influenced by many factors (e.g., religious, cultural beliefs, patterns of coping, disease experience, previous experience with loss/death, emotions associated with grief). 

• Children are members of many communities, including families, neighbourhoods, and schools, and their continuing role in these communities should be incorporated into their life journey. School is an integral part of their lives and it is essential they have ongoing opportunities to pursue education. 

• Children often respond differently to medical therapies and drugs, experience and express pain differently than adults, and require individualized treatment. 

• Children often are not as able to advocate for themselves and often rely on family members to make decisions on their behalf. 

• Parents bear a heavy responsibility for the care of their child, which may include making decisions in the best interest of the child at a time when they are highly stressed and grieving the loss of their child's health as well as dealing with other losses (e.g., financial stability, loss of time to spend with their other children). 

• The grief associated with a child's death has devastating, long-term implications for the entire family. In particular, siblings have unique needs during and after a brother or sister's death.

HOW CAN PSYCHOLOGY HELP?

Attention to the family is an essential aspect of supportive care when the patient is a child. Caring for a child with a life-threatening illness is a complex and emotionally difficult challenge that impacts the well being of all family members. Providing care and support to meet the needs of the ill child causes grief and distress in caregivers, regardless of their preparation.

Psychology can help to relieve the physical, social, psychological, and spiritual suffering experienced by children and families who face a progressive, life-threatening condition, as well as helping them to fulfill their physical, psychological, social, and spiritual goals.

The intense physical, emotional, social and economic demands placed on a family caring for a child at home, or during prolonged and/or repeated hospitalizations, can be extremely stressful. The stress and trauma of the situation often increase tension and emotional vulnerability, which can strain relationships between couples and among families.

Siblings often feel on the "side lines" during the child's illness and may act out behaviourally or may internalize strong emotions (e.g., sadness, anger, and jealousy). Encouraging individual family members to seek support outside of the family circle can ease this burden and strengthen the family's individual members, who can then be more available, emotionally and physically, for one another. Psychologists can provide counselling support, family therapy, and psychotherapy to address a number of related concerns and issues for all family members.

The psychological support provided to caregivers prior to and following the death of a child has been linked to the healthy adaptation for families mourning the death (Foley & Whittam, 1991).

HOW CAN PSYCHOLOGISTS HELP?

They can help in the following ways:

Managing Pain. A variety of psychological interventions (e.g., imagery, relaxation) are effective for managing pain and physical discomfort and can help to relieve suffering and improve quality of life.

Talking to Children about Death. Professionals can work with parents on how to talk with their children about death and dying. A variety of communication strategies can be used to talk to children about death and facilitate the understanding of death in an age-appropriate manner. In addition, psychology can support families to examine family beliefs about death and dying.

Making Difficult Decisions. Psychology can provide support and assistance with problem solving around practical concerns (e.g., financial issues, household functioning, and supporting loved ones). Some psychological interventions involve structured assistance in setting priorities, breaking problems down into manageable parts, and identifying (and implementing) possible solutions. This structured assistance may be useful when making difficult decisions regarding medical treatment (e.g., foregoing potentially life-sustaining treatments, implementing a DNR order, ending life support).

Promoting Coping Skills and Adjustment. Psychology can help the child and family to cope with distress and a range of difficult emotions (e.g., guilt, anger, anxiety, depression, grief, helplessness, and hopelessness).

Treatment of Mood and Anxiety Disordes. Psychologists can provide empirically validated treatments for disorders that commonly arise secondary to experiencing a life-limiting illness.

Psychologists can provide a variety of helpful therapies:

Relaxation therapies may help to reduce arousal and improve sleep.

Cognitive and/or Behavioural Therapy may help to challenge or alter maladaptive patterns of thinking and behaving, to promote healthy and adaptive ways of thinking and behaving, and to foster effective coping strategies.

Interpersonal Therapy may help individuals to examine social factors and current difficulties in their relationships. Interpersonal Therapy may assist the individual/family to communicate their needs and emotions more effectively within current relationships. Communication systems within a family affect how parents, children, and families interact.

Existential Therapy may assist the individual to explore their sense of being-in-the-world, to increase their self-awareness, and to find meaning in their life.

Parenting Strategies. Parents often benefit from specific guidance and education to enhance skills required to parent a child with a life-threatening condition. Such interventions also may be useful in parenting other siblings.

Preparing for the Child's Death. The family may benefit from psychological support regarding anticipatory grief when the child's death is inevitable. Additionally, psychology can be involved in assisting the child and family to prepare for death by participating in rites and rituals that are important to the family, and/or in life closure, gift giving, legacies, and other meaningful activities.

Coping with Loss, Grief and Bereavement. While most people experiencing grief do not require treatment, the death of a child is a risk factor in the development of complicated grief (a more intense response to loss). For this reason, psychological care for the family is important during the bereavement process following the death of a child.

The death of a child may be one of the most difficult and profound experiences for parents and siblings. Bereaved parents may be at risk for depression, anxiety, guilt, posttraumatic stress, and anger (Murphy et al., 1999). Families also undergo significant changes following the death of a child (e.g., increased parental and marital strain).

Surviving siblings may have a variety of psychosocial difficulties after the death (e.g., feelings of isolation and social withdrawal, guilt, anxiety, depression, sleep problems, posttraumatic stress symptoms (Hutton & Bradley, 1994). The death of a child causes a reorganization of the family. It often is helpful for surviving siblings to have support in adjusting to their new family role and in dealing with their grief. Bereavement Therapy (either individual or group) for parents and siblings provide a safe and therapeutic environment for adaptation to this loss.

You can consult with a registered psychologist to find out if psychological interventions might be of help to you. Provincial, territorial and some municipal associations of psychology often maintain referral services. For the names and coordinates of provincial and territorial associations of psychology, visit http://www.cpa.ca/public/provincialandterritorialassociations. The Canadian Register of Health Service Providers in Psychology also has a listing service and can be reached through http://www.crhspp.ca.

This fact sheet has been prepared for the Canadian Psychological Association by Lindsey Forbes, MA; Danielle Cataudella, Psy. D., C. Psych; and Cathy Maan, Ph.D., C. Psych.

Revised: March 2009