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Director of Psychosocial Services in Oncology Associate Professor Perelman School of Medicine of the University of Pennsylvania The National Children’s Cancer Society Web Conference April 17, 2012 at The Children’s Hospital of Philadelphia Lamia P. Barakat, Ph.D. The Cancer Center Help Your Child Adapt and Grow at The Children’s Hospital of Philadelphia The Cancer Center Web Conference Outline Typical reactions to cancer diagnosis and treatment How distress changes over time and for whom What is resilience and what resilient families can teach us? 10 Tips for Promoting Adaptation Additional adaptive coping strategies Additional resources Questions at The Children’s Hospital of Philadelphia The Cancer Center at The Children’s Hospital of Philadelphia Risk and resilience or competence-based approaches define our understanding of children and families in health care systems. Psychopathology, or deficit approaches, do not accurately reflect adaptation to childhood cancer. Most children with cancer and their families (caregivers, siblings) adapt well over time. Families have resources for managing childhood cancer and treatment but may also present with risks for distress. The Cancer Center Resilience Defines our Understanding of Adaptation Phase 3 Distress Normative response: Phase 2 Distress increases then plateaus Phase 1 Typical: return to normal function over time Diagnosis Time at The Children’s Hospital of Philadelphia Distress stable or escalates The Cancer Center Family Distress over Time at The Children’s Hospital of Philadelphia The Cancer Center Details on Adaptation Mildly elevated negative affect and posttraumatic stress symptoms (PTSS) after diagnosis. Then steady improvements at 3 and 6-month follow-ups. Stress and distress decrease with time. For majority of parents, feelings of uncertainty, anxiety, and depression decrease over time. Mothers and fathers: Some studies suggest no differences between mothers and fathers in distress. Others find mothers have more depression, anxiety, hopelessness, psychosomatic symptoms, and problems with general well-being. at The Children’s Hospital of Philadelphia Parental distress is most acute at diagnosis The Cancer Center Adaptation of Parents of Children with Cancer Lower self-esteem and self-concept School functioning and academic achievement Decreased social relationships Setting goals and goal attainment Employment difficulties Posttraumatic stress symptoms (for survivors) Who is most at risk? Those with pre-existing child or family challenges Children with brain tumors or cancers that affect the central nervous system Adolescents and young adults at The Children’s Hospital of Philadelphia Adaptation as measured by psychological functioning is consistent with that of children without cancer. Effects may be more subtle and isolated: The Cancer Center Adaptation of Children with Cancer Can vary in intensity May be disruptive to functioning Can be experienced by multiple systems simultaneously Symptoms Experience fear, horror, helplessness about diagnosis or some aspect of illness or treatment Re-experiencing Avoidance/numbing Arousal Source: www.nctns.org at The Children’s Hospital of Philadelphia A set of psychological and physiological responses of children and their families to pain, serious illness, medical procedures, and invasive or frightening treatment experiences. The Cancer Center Pediatric Medical Traumatic Stress at The Children’s Hospital of Philadelphia Distress and arousal communicate to the social environment – signal distress and recruit support. Re-experiencing allows us to process and resolve traumatic memories. Avoidance/distraction helps people tolerate distress and get through hospitalizations and procedures (i.e. the “bad times”). BUT … these reactions can create barriers to accessing medical care (for survivors) and maintaining quality of life. The Cancer Center Adaptive Function of PMTS at The Children’s Hospital of Philadelphia The Cancer Center What can we learn from those who are resilient to support those who struggle over time How might you better support yourself, your partner, your child with cancer, your other children? Risk-and-resistance model provides guidance by identifying modifiable risk and resistance factors that affect child and family adaptation. at The Children’s Hospital of Philadelphia FOR SUPPORTING YOUR CHILD, YOUR FAMILY, AND YOURSELF The Cancer Center 10 Strategies at The Children’s Hospital of Philadelphia Keep in mind that members of the same family can react in different ways. For children and teens, intense feelings and behaviors (e.g. temper tantrums, whining, talking back) are common but often temporary reactions. Most family members need time to adjust to and cope with the changes. The Cancer Center 1. Be patient and give everyone time to adjust at The Children’s Hospital of Philadelphia Diagnosis and treatment of a serious illness is usually new, confusing, and scary for children and siblings. Children have active imaginations; without accurate and appropriate information, they can get the wrong idea about what is happening. At the same time, parents often struggle with how to explain the illness and its treatment. Ask questions to figure out what your child knows and give information in clear, age-appropriate ways. If you would like some help, the team can be a resource for you. The Cancer Center 2. Help your child understand what is happening at The Children’s Hospital of Philadelphia Remember that your relationship with the medical team influences how safe your child feels and how much your child trusts them to help. Remind your child that the staff has a lot of experience helping other children. Encourage your child to participate by asking the team questions. The Cancer Center 3. Think of the medical team as helpers In different ways (talking, drawing, story-telling, hugging) At different times (dinnertime, bedtime) In different places (in the car, in the hospital) Sometimes, sharing your feelings can show children that it is okay to do the same. When children or teens do talk, accept their feelings and be a good listener, even if what they say is hard to hear. at The Children’s Hospital of Philadelphia This can happen: The Cancer Center 4. Encourage your family to share their feelings at The Children’s Hospital of Philadelphia Because illness and treatment can be unpredictable, regular routines help children and teens feel safer. Having everyday routines (e.g., meal and bed times, household chores) and activities give family members things to expect and look forward to. Decorating the hospital room with things that are familiar and comforting can create a comfortable environment for your child and family. The Cancer Center 5. Keep as many everyday routines as possible at The Children’s Hospital of Philadelphia You may want to relax family rules in order to help your child or teen feel special or to make up for hard times that your child is experiencing. However, in the hospital and at home, it is often better to keep most of your family rules and expectations the same. The Cancer Center 6. Set Limits as Usual at The Children’s Hospital of Philadelphia It is often tempting to do everything for a child who is ill; however, doing things independently, as much as the illness allows, gives children a sense of accomplishment and control. For example, give your child the chance to do things like brushing teeth, dressing, cleaning up toys, and preparing snacks when possible. The Cancer Center 7. Encourage your child do some things independently Talk ahead of time about how to explain the illness and respond to questions. at The Children’s Hospital of Philadelphia After the diagnosis of a serious illness, people can feel ‘different’ and alone. You and your children may wonder how others will react. Plan a few fun activities and encourage visitors. The Cancer Center 8. Stay connected with friends and family at The Children’s Hospital of Philadelphia You can care for your family better by taking care of your own needs and dealing with worries when they arise. Don’t forget to pay attention to health habits that keep you strong and help you cope, like eating, sleeping, getting fresh air, and physical activity. Talk about your concerns with other adults, such as friends, family members, the psychosocial team, clergy, or medical staff. The Cancer Center 9. Take Care of Yourself at The Children’s Hospital of Philadelphia Time away from your child allows you to take care of yourself and other family members. It also gives your child the chance to feel safe without you and try more things independently. When you leave your child with a family member or familiar adult, be sure to let them know when you are leaving, when you will be back, and then follow through. The Cancer Center 10. Take Breaks Social Support at The Children’s Hospital of Philadelphia Appraisals / Hopefulness Adaptive Coping The Cancer Center Additional Strategies Cancer Diagnosis Cancer Treatment Relapse Late Effects COPING Active/Problem-focused Emotion-focused Social Support APPRAISALS Degree of Threat Expected Outcome Resources The Cancer Center STRESSFUL EVENT at The Children’s Hospital of Philadelphia Stress Processing Model (Lazarus & Folkman) Appraisals Do we have the resources to deal with cancer and treatment? Are there aspects of my child’s cancer and treatment I can control? Do things generally work out the best for me and my family? Has my attitude about life, my family and friends, my future changed for the better because of experiencing cancer and treatment of my child? 13-year-old with cancer: “I had to express optimism about my disease. The suffering, the side effects, all of them will pass away. I told myself I was going to face cancer/chemotherapy that was considered a test, a whole new life in my life . . . Thus, I changed my emotion, my feelings, and my thoughts.” (Wu et al., 2009) Optimism is associated with: Improved life satisfaction More positive perceptions of one’s health Less anxiety Less depression The Cancer Center Is this event a threat to me or my family? at The Children’s Hospital of Philadelphia Appraisals at The Children’s Hospital of Philadelphia The Cancer Center Acceptance Problem-focused coping (seek guidance, problem-solving) Seeking social support Approach coping (efforts to eliminate or reduce stressors) Emotion-focused coping Efforts to regulate emotions associated with the stressor) Distance coping or distraction--distancing from situation or emotions, stepping back to reassess--adaptive in small doses Avoidance coping Escape Resignation Wishful thinking (the if-only fantasy) at The Children’s Hospital of Philadelphia Active (cognitive and behavioral efforts to define, understand, and resolve stressor) The Cancer Center Coping Strategies Used by Children with Cancer and their Families More Distress ) Avoidant coping (substance abuse) Isolation from others Negative self-blame (emotional regulation strategy) Less Distress Problem appraisal Active problem-solving Social support-seeking Perceived support The Cancer Center at The Children’s Hospital of Philadelphia How Coping Relates to Parental Distress and Adaptation Mothers, compared to fathers, use more coping strategies in general and rely on information-seeking, social support, and emotion-focused coping strategies. Mothers who use more problem-focused coping (i.e. problem-solving ) and less emotion-focused and avoidance coping (i.e. getting out pent up feelings, denial) Have fewer symptoms of depression and anxiety and less overall distress Fathers use more problem-focused strategies (problem-solving) Fathers who use more emotion-focused and avoidance coping Work more hours (work is a “refuge” to avoid child’s illness) Fathers use more emotion-focused coping the longer child is in treatment at The Children’s Hospital of Philadelphia The Cancer Center How Coping Relates to Parental Distress and Adaptation at The Children’s Hospital of Philadelphia A strong belief that one has the resources to deal with cancer and treatment and continued hope for making the kind of future children and adolescents want for themselves results in better psychosocial functioning. Active coping is associated with better quality of life and psychosocial functioning among children and adolescents with cancer. Reduced social support puts children with cancer at risk for poorer outcomes. Reliance on wishful thinking and denial, are associated with more symptoms of anxiety and depression and with more somatic complaints. The Cancer Center How Coping Relates to Child Adaptation Case management Illness-related education/information Information about financial resources Supportive counseling Relationship counseling Listening Instrumental (rides, babysitting other children, meals) Discharge planning assistance at The Children’s Hospital of Philadelphia Social support is what you get; perceived social support is what you think you get/your satisfaction with what you are getting. Different sources (family, friends, professionals, internet) and types of social support: The Cancer Center Social Support as a Coping Resource Facing the cancer with courage Rekindle hope Construct parental role ability Assist the child to live with the illness Improve family flexibility That said, we acknowledge that social supports are sometimes perceived as unsupportive. at The Children’s Hospital of Philadelphia When parents perceive that they are wellsupport and when children and adolescents remain connected with friends and family, they are better able to: The Cancer Center Social Support and Adaptation “It’s a part of my personality change, I have had to be very strong and just simply get people to, for want of a better word, perhaps leave me to do my mothering and lean very much on my GP and the Maternal Health and Child Nurse”. A father reassessed his support: “You learn who your friends are. It’s interesting watching people’s reactions. Some people stopped contacting us. We’ve been lucky with the support we’ve been given.” A mother linked her child’s positive prognosis with less need to talk with others: “We didn’t go to any of the other parent groups. We had a good prognosis. We didn’t want to hear or tell. We didn’t need that.” The Cancer Center For a mother, with no extended family support, the role of formal support gained more significance: at The Children’s Hospital of Philadelphia Parent Comments on Social Support optimize medical care prevent/reduce distress and traumatic stress reactions promote positive adaptation and family functioning throughout treatment and survivorship and across multiple domains of functioning Team comprised of professionals from a number of disciplines including social work, child life, creative arts therapies, teachers, and psychology. Also, conduct research in behavioral oncology and provide staff support. at The Children’s Hospital of Philadelphia Goals are to: The Cancer Center Psychosocial Services in Oncology at the CHOP Cancer Center: A Model at The Children’s Hospital of Philadelphia “Universal” services for patients and families bolster resources, address expected distress, and promote resilience. Staff support provided. Research conducted. “Targeted” programs are provided for patients and their families who are at risk for or demonstrating difficulties with adaptation. “Clinical” interventions, for patients and families with severe distress, pain, and/or pre-existing vulnerabilities, involve collaboration among all staff providing psychosocial care. Psychological intervention and psychiatry consultation initiated. The Cancer Center Services Guided by PPPHM http://www.chop.edu /service/oncology /home.html at The Children’s Hospital of Philadelphia Resources for Families at: The Cancer Center Additional Resources This includes framing cancer and treatment with positive appraisals, using more active, problem-focused coping and relying on social supports that provide instrumental help, information, and emotional support. Self-care is essential. at The Children’s Hospital of Philadelphia Resilience of children and adolescents with cancer and their families is not the exception; it is the norm. Goal is to identify and address risks while building on your family’s resources to promote reduced distress and adaptation over time. Building resources (key to adaptation) not only for patients but for families as well. The Cancer Center Conclusions at The Children’s Hospital of Philadelphia The Cancer Center QUESTIONS?