s the number of childhood cancer survivors has increased,' clini-A cians charged with providing psychosocial care have seen tasks multiply and involvement with patients and families extend well into long term survival. In addition, rapidly unfolding changes in the delivery of health care are altering clinical practice and increasing the demand for accountability and for outcome-driven, cost-effective models of care. Consequently, psychosocial clinicians are being challenged to articulate clearly what they do, standardize their approaches, and research the efficacy of clinical efforts.
Although attention to the psychosocial aspects of childhood cancer and the increasing need for clinical services has paralleled medical treatment advances, psychosocial research to evaluate, support, and direct those services has proceeded more slowly. Redd notes that "85% of the published work in pediatric psychosocial oncology has appeared since 1980" and observes further that these fall into three major areas: "the immediate and long term psychosocial impact of cancer and its treatment on the patient and the family; the neuropsychologic sequelae of cancer treatment; and behavioral intervention to reduce distress during invasive diagnostic and therapeutic procedures.'"
The body of work referred to by Redd examines many issues impacting patient and family quality of life that emerge at diagnosis and continue through periods of remission, relapse, palliative care, terminal illness, and long term survival. Studies explore child/adolescent issues such as coping with painful procedures3-'; changes in body image and self-e~teem~-'~; altered relationships with peers and classmate^'^-'^; social is~lation'~,''; school reintegration'*-'l; cognitive functioning and neuropsychologic effect^''-^^; and overall coping with the expe~ience.'~-~~ Additional studies examine the effectiveness of behavioral and other psychologic interventions to reduce child and adolescent anxiety, fear, and di~comfort~'-~~; manage pain33-35 and other treatment ~ide-effects~~; and provide social skills training3' * Need for information on diagnosis, treatment, and * Provide written and audiovisual material * Discuss common psychosocial issues * Identify and address cultural or language barriers * Encourage information-seeking behavior Assist family to clarify questions regarding: diagnosis and treatment * Discuss information needs of siblings and other family members * Assess ability of caregivers to comprehend and process information * Assist parents to anticipate patient's emotional reactions to diagnosis and onset of treatment * Provide education regarding: common, age-related ways of expressing and handling emotions * Supply written or audiovisual material Encourage open communication * Describe available support services for child and encourage use * Discuss overprotection and overindulgence * Encourage parents to maintain effective discipline * Encourage parents of adolescents to support independence and respect privacy of patient * Assist parents to anticipate common physical side effects and patient's likely age-related reactions * Provide and discuss written and other material * Encourage parental involvement in care * Teach new skills to parents * Involve parents in staff efforts to prepare children for painful procedures * Encourage comforting and nurturing behaviors that support patient coping * Help parents encourage return to school and other activities psychosocial aspects of childhood cancer __ Family provision of emotional support to child/ adolescent -* Need to assist patient in handling physical aspects of diagnosis and treatment * Need for parents and other family members to express and manage emotional responses to diagnosis and treatment * Identify common emotional responses * Provide empathy * Encourage use of adaptive coping strategies to deal with heightened anxiety * Encourage mutual support * Remind parents to attend to personal needs for rest, food, respite Introduce to other families, if desired Provide education, if needed, on identifying, expressing and managing emotions * Need to function effectively in the health care * Identify decision-making tasks * Describe roles of team members and introduce them * Supply information on hospital and other resources and assist family to access them Encourage parents to act as patient's advocate * Identify and address basic needs andlor financial concerns * Encourage involvement in support groups and other psychosocial programs * Assist family in planning for at-home care after discharge system Balancing needs of all family members * Assist in anticipating needs of each member of nuclear family * Discuss importance of balancing competing needs * Assist parents, as necessary, to make practical arrangements regarding: children, jobs, transportation * Discuss possible role changes Make any referrals necessary to address preexisting problems 0 Maintaining relationships within and outside the * Provide education on importance of attending to family relationships-patientlparents, marital, siblings, etc. Discuss impact of diagnosis and treatment on family system * Identify sources of support * Suggest ways of getting or using support Refer to in-hospital or community support groups family * Facing uncertainty and loss of control * Explore thoughts and feelings on this issue * Identify this as common issue * Offer empathy Help family members identify areas in which control can be exercised (continued) * Searching for meaning * Identify as common issue * Explore specific religious andlor cultural beliefs that offer explanations and meaning * Encourage discussion of concerns, distress with family minister or priest * Identify, i f appropriate, literature on this issue * Encourage discussion with other parents * Provide empathic support Family psychosocial issues 11. Treatment when remission is sustained Clinical interventions * Need to adjust to chronicity of treatment 0 Identify any problematic issues in adjustment and problem-solve to address concerns * Validate family competence when adjustment to treatment is good * Offer supportive counseling to assist family through periods of treatment intensification or repeated hospitalization Mastering feelings regarding emotional trauma being * Identify specific concerns and offer empathy * When possible, note patient's successful coping with treatment * Provide supportive counseling or make needed referral when parent is experiencing unusual difficulty * Offer supportive counseling to encourage rest and respite for parents Provide support through parents' groups experienced by patient ~_ _ _ _ _ _ _ _ ~ * Need to assist child in dealing with side effects, self-* Educate regarding usual responses 0 Suggest specific strategies tailored to patient's concerns * Encourage parents to support patient's involvement in available support groups * Assist parents in encouraging patient to attend school and engage in usual activities * Supportive counseling on parenting issues * Initiate liaison activity with patient's school * Create a supportive outpatient clinic environment esteem, body image, and changes in personal aspirations * Need to comply, and help patient comply, with * Monitor family reports to determine if compliance is an issue Suggest strategies to parents to help encourage patient's compliance Counsel to support commitment to treatment plan 0 Problem-solve or refer to address practical obstacles to treatment compliance (e.g., finances, transportation) * Counsel to address fearlanxiety regarding: new treatment modalities (XRT, BMT) being planned * Encourage parents to help patient use groups, buddy programs, summer camps, etc. to secure support Provide new educational materials * Facilitate discussions andlor conferences with medical staff * Educate regarding: changes occurring * Counsel parents about changing needs of patient as development occurs ongoing treatment * Need to meet changing informational needs ~~ ~ ~ * Monitoring satisfactory family functioning * Identify issues of concern * Promote effective family relationships Counsel regarding stress management * Educate about effective relationships a Provide empathic support when problems arise * Validate good family relationships and functioning * Refer when abusive behavior is witnessed or reported Identify and address issues affecting finances, jobs, insurance, etc. Securing ongoing emotional and social support for * Assess and address specific concerns regarding emotional responses Identify and address sibling issueslconcerns * Provide supportive counseling, when needed, to help parents deal with inadequate support * Encourage parent-to-parent contact or involvement in self-help or support or church groups * Counsel to sustain optimism family * Anticipating end of treatment Educate parents to prepare for common emotional reactions as treatment end approaches * Counsel to deal with heightened anxiety andlor ambivalence