The Experience of Uncertainty in Parents of Children With an Undiagnosed Medical Condition
Condition: Multiple Abnormalities
MeSH terms: Congenital Abnormalities; Abnormalities, Multiple
Study type: Observational

Summary: 
      Background:

        -  Rare and undiagnosed conditions are often chronic and disabling, with symptoms affecting
           different organ systems at various levels of severity. Perhaps the most challenging
           feature of an undiagnosed medical condition that has lasted 2 or more years is its
           characteristic uncertainty. In the absence of a diagnosis, health care professionals can
           provide only limited treatment and prognostic information.

        -  In the case of a child with an undiagnosed condition, the uncertainty that accompanies
           what is often a chronic, debilitating medical condition and an undefined prognosis may
           have physical, psychological, social, and spiritual implications for the entire family.
           Research suggests that parents of a child with an undiagnosed medical condition may be
           at significantly increased risk of anxiety, depression, poor health, and overall lower
           quality of life.

        -  It is not well understood how individuals cope with and adapt to chronic uncertainty,
           and the factors that influence this process. To design future interventions, descriptive
           studies are needed to reveal predictors that can be manipulated to improve outcomes.

      Objectives:

        -  To examine whether perceptions of uncertainty, and perceived personal control, are
           associated with coping and adaptation.

        -  To examine how the length of time elapsed since child was identified as sick and
           perceptions of uncertainty affect coping and adaptation.

        -  To assess how perceptions of uncertainty, time elapsed since child became sick,
           optimism, and perceived personal control affect coping and adaptation.

      Eligibility:

        -  Parents (older than 18 years of age) of children who have an undiagnosed medical
           condition.

        -  Participants must have a working e-mail address or fixed postal address.

      Design:

        -  Parents will be recruited from Web-based support networks for parents of undiagnosed
           children through Web site postings, electronic mailing lists, and printed newsletter
           postings.

        -  Participants will be asked to complete a questionnaire about their experiences in living
           with a child who has an undiagnosed but chronic medical condition. The main outcome
           variable is adaptation to living with one's child's undiagnosed medical condition.

        -  Participants have the option to complete an online or paper version of the
           questionnaire. The questionnaire should take between 20 and 30 minutes to complete.

        -  No medical treatments are specifically offered as a part of this study.
    

Detailed description: 
      This study aims to understand the impact on parents of having a child with an undiagnosed
      medical condition and the factors that contribute to their adaptation. Rare and undiagnosed
      conditions are often chronic and disabling, with symptoms affecting different organ systems
      at various levels of severity. Perhaps the most challenging feature of an undiagnosed medical
      condition that has lasted two or more years, however, is its characteristic uncertainty. In
      the absence of a diagnosis, health care professionals can provide only limited treatment and
      prognostic information. It is not well understood how individuals cope with and adapt to
      chronic uncertainty, and the factors that influence this process. To design future
      interventions, descriptive studies are needed to reveal predictors that can be manipulated to
      improve outcomes. In this study, Lazarus and Folkman's Transactional Model of Stress and
      Coping provides a framework to examine coping and adaptation in the parents of children who
      have had a chronic, undiagnosed medical condition for two or more years. A cross-sectional
      research design using a mixed methods survey will be used to examine the relationships among
      appraisals (perceptions of uncertainty and perceived personal control), time elapsed since
      parents first realized their child was sick, coping and adaptation. Parents will be recruited
      from web-based support networks for parents of undiagnosed children via website postings,
      email listservs and printed newsletter postings. Participants will have the option to
      complete an online or paper version of the questionnaire. The main outcome variable is
      adaptation to living with one's child's undiagnosed medical condition.
    

Time perspective: Retrospective
Keywords: Uncertainty; Undiagnosed; Rare Diseases; Parents; Multiple Abnormalities