Coping with a Child's Chronic Illness

Author: Janey Willis. Scleroderma is highly variable. See Types of Scleroderma. Read Disclaimer.
Overview of Coping with Child's Chronic Illness
Personal Stories of Children with Scleroderma

Overview of Coping with a Child's Chronic Illness

Coping with a child's illness can be quite challenging, but with the right resources, knowledge and attitude, it is possible to continue to maintain a sense of normalcy for the child, the caregivers, and the family. ISN

Children with chronic illnesses: factors influencing family hardiness. Nurses and other health professionals should provide ideas for positive child coping and consider collaboration with mental health providers when they identify children facing emotional problems. PubMed, Issues Compr Pediatr Nurs, 2015 Mar;38(1):57-69.

Involving parents in managing their child's long–term condition – a concept synthesis of family–centered care and partnership–in–care. The key attributes are outlined in a practical framework of involvement which may promote parent–professional collaboration for families of children with long–term conditions. PubMed, J Pediatr Nurs, 2015 Jan-Feb;30(1):143-59.

Children with chronic conditions: perspectives on condition management. The study used the family management style framework (FMSF) to examine child perspectives on the joint venture of condition management between the child and family. PubMed, J Pediatr Nurs, 2015 Jan-Feb;30(1):25-35.

Good–parent beliefs of parents of seriously ill children. Engaging parents individually regarding what they perceive to be the core duties they must fulfill to be a good parent may enable more customized and effective decision support. PubMed, JAMA Pediatr, 2015 Jan;169(1):39-47.

Developing biographies: the experiences of children, young people and their parents of living with a long-term condition. This article reports on data from a qualitative interview study that sought to understand the experiences, choices and actions of children and young people undergoing surgery for a long-term condition and that of their parents. PubMed, Sociol Health Illn, 2014 Jul;36(6):823-39.

Personal Stories of Children with Scleroderma

Annabella: Mother of Daughter with Linear/Morphea Scleroderma. When I first noticed the marks on my little girl's left thigh during bath time last summer, I got a sick feeling in my stomach…

Bregan: Mother of Daughter with Morphea. I am a mother of six children. My fourth child, Bregan, who is seven years old, has just been diagnosed with morphea…

Cindy Fuchs-Morrissey: Mother of a Progressive Systemic Sclerosis Child. Our daughter Hilary has scleroderma in the form of progressive systemic sclerosis. She turned thirteen years old several days ago and will be in eighth grade for the 2003-2004 school year…

Ed: Father of a Linear Morphea Patient. One night after their practice, Erwin complained about pain in his knee joints. I thought it was just a pain inflicted by karate kicks during their sparring practice…

Georgina: Mother of Child with Morphea. Hello, I am the mother of a five-year-old child who about six months ago was diagnosed with morphea, a previously unknown illness for me…

Jo: Mother of a Child with Morphea Scleroderma. During the summer of 1999, we noticed that our daughter had a blotchy, purple-red rash all over the lower part of her left leg…

Shaz: Mother of Son with Morphea. I am writing to let you know about my seven-year-old son who has had morphea since he was five years old and has just been diagnosed with localized scleroderma…

Go to Coping Strategies

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