Serious illness in a child, such as cancer, is a significant stressor for patients and their families. For many families, a combination of basic supportive interventions and time help them cope with the stress that cancer and treatment may bring to the entire family. But some patients, siblings and caregivers develop persistent traumatic stress reactions, including post-traumatic stress disorder (PTSD).
PTSD is a condition that develops after a life-threatening experience, which made a person feel fear, helplessness or horror. People with PTSD experience symptoms such as persistent and unwanted thoughts about the experience; nightmares; a desire to avoid people, places or things associated with the experience; emotional numbing; feeling distant or cut off from others; and physical arousal (being anxious and easily startled).
Experiencing some of these post-traumatic stress symptoms (PTSS) is often part of the process of coming to terms with a life-threatening event. An individual is said to have PTSD when:
- Many of these symptoms occur
- When symptoms persist for more than a month
- When symptoms interfere with day-to-day functioning
Studying post-traumatic stress in cancer patients and families
Psychologists at The Children's Hospital of Philadelphia have been studying pediatric cancer-related PTSD since the 1990s and are considered the foremost experts in the field. This area of research grew out of conversations with families about their thoughts, feelings and physical experiences as they worked to return to normal after their child had gone through cancer treatment. The goals of this research include:
- Understanding the range of responses of survivors, parents and siblings to cancer diagnosis while considering cancer in the context of a trauma
- Identifying those at risk of developing PTSS and PTSD
- Developing interventions to treat survivors, parents and siblings affected by PTSS and PTSD
- Developing treatment approaches and psychosocial services that reduce experience of trauma at diagnosis and during treatment
Understanding cancer-related post-traumatic stress disorder and symptoms
Researchers at CHOP have published extensively on the subject of PTSS and PTSD in childhood cancer patients and their families. Their work has shown that within the first year or two after diagnosis, cancer-related post-traumatic stress symptoms are quite common. Interestingly, parents and siblings of children with cancer report more symptoms than the patients themselves. In the majority of cases, symptoms resolve and distress levels return to where they were before diagnosis.
Researchers are particularly interested in the 30-45 percent of parents and siblings and 15-20 percent of childhood cancer survivors who experience symptoms years after treatment has ended. The experience of this subset of families is referred to as persistent traumatic stress reactions, and these are the people who may benefit from more extensive early intervention with psychosocial services.
Studies suggest a range of risk factors for persistent PTSS, including pre-existing vulnerabilities, prior behavioral or emotional concerns, and personal opinions about the medical event. Researchers are asking, "How can we provide the right type and level of intervention in the context of a family’s specific risks and resources to prevent persistent distress and problems with functioning?"
Identifying at-risk families: the Psychosocial Assessment Tool (PAT)
The Psychosocial Assessment Tool (PAT) is a 20-item, evidence-based screener completed by families. The responses to the questions help reveal factors that put the family at risk for difficulty managing the stress of childhood cancer, such as financial stressors, a child with prior significant behavioral or developmental challenges and recent experience of other traumatic events. The PAT also helps identify the current strengths or resources of the family, such as strong family and friendship supports,
Families with fewer risks and more resources are resilient and are more likely to recover from the trauma of cancer while families with more risk factors and fewer resources need more intensive psychosocial care.
Development of the PAT began in the 1980s, prompted by concerns about changes in healthcare policy in the United States and impending challenges in providing intensive psychosocial care for every family with a child with cancer. Scores on the PAT can be used to characterize the level of risk and need of a family with a child with an acute or chronic illness. This score can then be used in conjunction with the Pediatric Psychosocial Preventative Health Model (PPPHM), also developed by CHOP behavioral researchers, to conceptualize the type and intensity of psychosocial care required to meet the needs of the family — universal care, targeted care or clinical care.
Several multidisciplinary studies have been completed in recent years which have refined the content and validated its effectiveness in identifying the psychosocial needs of families.
Studies of the PAT's effectiveness have shown:
- PAT classification at diagnosis predicts adjustment during treatment. A 2009 study found that those families found to be at higher levels of psychosocial risk at diagnosis had more distress, more family problems, and greater psychosocial service use four months into treatment.
- Psychosocial risk screening impacts psychosocial care. A 2011 study found that when families completed the PAT, their level of psychosocial risk was better documented in their medical record compared to families who did not complete the PAT. Also, among those completing the PAT, their level of psychosocial care was well matched to their level of need.
A recently funded study is intended to validate a Spanish-language version of the tool.
Developing PTSD interventions for cancer patients
The goal of current interventions for patients and families with cancer-related PTSS and PTSD is largely to reframe the cancer experience. Behavioral health professionals aim to do this by:
- Normalizing the experience of PTSS and cancer. Help patients and families understand and accept what they’re feeling — the emotional repercussions of cancer treatment is expected and not uncommon.
- Providing additional support for those with cancer-related PTSD. Help patients and families reduce perceptions of threat, fear and helplessness and foster a sense of control and competence.
- Exploring post-traumatic growth. Help patients and families recognize that personal growth and stronger connections to family and friends can come from experiencing a traumatic event like pediatric cancer.
CHOP researchers conducted a benefit-finding study that explored the associations between people’s perception of their treatment intensity and distress during treatment, and their reported positive changes for self, relationships, and life goals — or post-traumatic growth (PTG). Both survivors and their parents endorsed posttraumatic growth across these areas of functioning, even if they also experienced posttraumatic stress symptoms. They recognized that although cancer was traumatic, they had grown as a result of their experience with cancer.
For example, they were confident that they could manage future stressors and they appreciated the support of family and friends. Importantly, interventions to reduce distress and PTSS help families reframe the cancer experience to identify the unexpected, positive consequences of cancer.
Two published interventions have come out of the PTSS and PTSD work done at CHOP: Surviving Cancer Competently Intervention Program (SCCIP) and SCCIP-ND (Newly Diagnosed). These multi-session interventions integrate cognitive-behavioral and family therapy approaches to reduce PTSS in adolescent cancer patients and their families. SCCIP and SCCIP-ND address two specific areas:
- Post-traumatic stress symptoms related to cancer and its treatment
- Family interactions that facilitate long-term adjustment to illness
Researchers found significant reductions in intrusive thoughts among fathers and in arousal among survivors who completed SCCIP. Studies surrounding the effectiveness of the SCCIP-ND are ongoing.
For more information
- Center for Pediatric Traumatic Stress. A CHOP program that addresses medical trauma in the lives of children and families.
- Healthcare Toolbox. A guide for professionals to help patients and families cope with illness and injury.
- National Child Traumatic Stress Network. A group established to improve access to care, treatment and services for traumatized children and adolescents exposed to traumatic events.
For more information about our services or how to access them, please contact the Oncology Psychosocial Services Program.