To Örebro University

The overall aim of this thesis was to describe experiences and long-term outcomes of healthcare interventions for children with congenital limb reduction deficiency (CLRD). 

The four studies included were conducted with descriptive designs. Semi-structured interviews were carried out with parents (n=17) in study I and adolescents (n=10) in study III. Data were analyzed using a qualitativecontent analysis (study I) and a phenomenographic approach (study III). Study II was conducted with a prospective case-control design, where data from cases (n=9) and controls (n= 27) concerning prosthesis use and skills were collected for 17 years and analyzed with independentsamples tests. In study IV, a cross-sectional survey was conducted, using a study-specific questionnaire, analyzed with chi-square tests and descriptive statistics. 

The involvement of parents in decision-making and treatment for their child with a CLRD generates several roles derived from the child’s and family’s needs, with tasks assigned to the parents by HCPs. Concerning young children’s development of prosthetic skills and prosthesis use over time, our results show no additional advantages from fitting a myoelectric hand prosthesis before the age of 2½ years. The treatment received during childhood had shaped the adolescents by creating opportunities, allowing them to choose their own paths, and enabling a sense of belonging in a context. The majority of children with CLRD will, as adults, have a life situation with opportunities for education, employment, and social life, a life situation that corresponds well to the Swedish population as a whole.

This thesis shows that decisions made at an early stage for the treatment of children with CLRD contribute to physical and social skills that shape the children through their later choices and appear to be important for their future life situation. Despite different constraints people with CLRD have similar lives to their peers.