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Chapter 16: Psychosocial Issues 305 Relationships with families should not end abruptly during the bereavement period, because it is a most difficult phase for them. Assisting families to understand many of the more intense feelings (anger, regret, loneliness, depression) as part of the natural process at this time is helpful. Ongoing communication to reflect on the child’s life, referrals for counseling and support groups, and caring about the family’s struggle are important. The death of one’s child or one’s sibling, regardless of the age of the child (young adults, older adults) is devastating, and can have lifelong implications for the family. The complication of having a genetic illness, an illness that a family will have to deal with for generations to come, adds to the complexity of coping after a child dies. FA will always be an issue for an affected family. Recommendations for the Physician • Provide the opportunity for an initial psychosocial assessment of the child and family at the time of diagnosis. • Provide the family access to appropriate counseling and other resources throughout the life of the person with Fanconi anemia. • Provide developmentally appropriate communication for patients to enhance their understanding of and comfort with FA. Encourage dialogue among children with FA or other bone marrow failure diseases or other life-threatening illnesses. • Encourage involvement with activities through the FA Research Fund to help families develop and maintain a current knowledge base, to gain support, and to afford families an active role in supporting research seeking to help their children.
306 Fanconi Anemia: Guidelines for Diagnosis and Management • Encourage families to create a working partnership between the physician and the family, allowing for mutual respect for what each has to offer to the situation. Enable patients, as they mature, to become responsible and proactive with regard to their medical care (recommended by a focus group of parents). References 1. Koocher GP, O’Malley JE. The Damocles Syndrome: Psychosocial Consequences of Surviving Childhood Cancer. New York, NY: McGraw-Hill; 1981. 2. Rando TA. The increasing prevalence of complicated mourning: the onslaught is just the beginning. Omega 1992-93; 26: 43–45.
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Chapter 4 Gastrointestinal, Hepatic
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Chapter 7 Endocrine Disorders in Fa
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Chapter 9 Matched Sibling Donor Hem
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Chapter 12 Novel Treatment Options
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Chapter 13 Head and Neck Squamous C
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guidebook. - Fanconi Anemia Research Fund

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