Children with colorectal diagnoses, such as an anorectal malformation, Hirschsprung disease and functional constipation, can experience a wide range of medical, social and emotional challenges. These diagnoses are unique in nature due to invasive treatment plans that can largely impact life at home, school, peer relationships and overall quality of life.
While Child Life Specialists, Psychologists, and Social Workers work with children and families to promote resiliency, self-efficacy and coping skills when they are impacted by a chronic medical condition and/or hospitalization, there are also a number of ways for parents to support children with a colorectal diagnosis:
Support at Home
Normalize and validate the child’s worries and fears about treatment and the diagnosis.
Include the child in their bowel regimen (i.e. choosing activities during flushes, help with setting up supplies for treatment, mixing fiber or laxative with drink of choice, and/or creative ways to take medication as able).
Provide age and developmentally appropriate information regarding the upcoming appointment/hospitalization or reason for treatment: why is the patient going to the hospital, what will be discussed, will any procedures occur, who they will see or meet, why is the treatment/procedure needed.
Regularly set aside time to spend with your child doing a fun activity that is not related to their diagnosis or treatment (i.e. child-direct play, movie nights, game night, or parent-child dates).
Keep appropriate expectations for your child and set appropriate limits on behavior.
Involve siblings in child’s care and treatment as appropriate to promote family bonding and normalization.
Support at School
Discuss a 504 Plan with the child’s school regarding restroom accommodations.
Discuss with your child’s teacher about your child’s diagnosis to better promote understanding including their needs during school hours. This can be done by providing teachers with diagnosis specific resources to support a 504 Plan and from the medical team.
When appropriate, provide education resources for peers. Imagination Press provides developmentally appropriate resources for parents, teachers, and clinicians to address soiling.
Help your child develop a script for sharing about their diagnosis and treatment with peers. Child life can assist with age appropriate language and school reentry resources.
Have a discussion with your child about what information relating to their diagnosis and treatment that should be kept private.
Help your child develop positive peer relationships through play dates and extracurricular activities. Social support from peers can be a strong buffer against bullying.
Support in the Hospital
Assemble your support team in the hospital and request support from a Child Life Specialist who can aid with:
Developmentally appropriate hospital preparation through verbal information, play/demonstration, or photos and books for procedures and admissions.
Teaching coping techniques to promote non pharmacological pain management.
Provide teaching resources, emotional support, and normalizing activities for siblings.
Advocate for your child’s needs.
Create a coping kit to bring to the hospital or a clinic visit. This kit can include comfort items, toys, games, sensory objects, a journal, books, etc.
Encourage a normal environment and activities in the hospital environment to promote a positive space.
Utilize support resources at the hospital (i.e. Sibling Clubhouse and Family Resource Center).
The information provided is not a comprehensive list of recommendations and may not work for all families. It reflects our collective knowledge and experiences working with families and children with colorectal diagnoses.
Center for Colorectal and Pelvic Reconstruction (CCPR)
Charae Keys, MSW, LISW-S is a clinical social worker for the Center for Colorectal and Pelvic Reconstruction. Charae’s role includes case management, care coordination, facilitation of support groups and collaboration with other professionals on the CCPR team, to provide best outcomes to patients and their families.
Rose Schroedl, PhD
Rose Schroedl, PhD, is a pediatric psychologist who specializes in the psychological care of children and their families with Inflammatory Bowel Disease and other gastrointestinal disorders.
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