Improving Disease Knowledge in Adolescents With Sickle Cell Disease
Condition: Sickle Cell Disease; Quality of Life
MeSH terms: Anemia, Sickle Cell
Study type: Interventional

Summary: 
      Increased knowledge about an illness can increase self-management among those afflicted. In
      order to facilitate people with sickle cell disease living a longer and healthier life, they
      should be taught to manage their illness.An adolescent with a chronic illness has many unique
      challenges, in addition to maneuvering the turbulent adolescence period itself. It has been
      that better knowledge and more positive perceptions of their illness equate not only to
      better control of their illness but also better quality of life.Studies have also shown the
      benefits of self-management: when patients are responsible for managing their own illness,
      their clinical outcomes and quality of life improve and they become less dependent on health
      care services.

      In this study we aim to examine if knowledge, and any changes in knowledge, will each have
      any association with Quality of Life (QOL) and their perceptions of their illness (IP). We
      also seek to investigate the effects of an educational booklet, as well as an intervention
      including the educational booklet with formal counselling on their knowledge, QOL and IPs.
    

Detailed description: 
      In this inquiry, we wish to apply an educational intervention to determine if there are any
      improvements in disease knowledge as a result among adolescents attending the Sickle Cell
      Unit (SCU) in Jamaica. We also wish to examine if knowledge, and any changes in knowledge,
      will each have any association with Quality of Life (QOL) and their perceptions of their
      illness (IP).

      Our specific hypotheses are:

        1. Important predictors of knowledge among adolescents with Sickle Cell Disease (SCD) are
           gender, age, education of the adolescent as well as of the parents, socioeconomic
           status, frequency of attendance at SCU, rural/urban residence, and disease severity.

        2. The intervention involving training using an educational booklet specific to 'teens
           living with SCD' will improve knowledge among the adolescents

        3. Adding 'individual Counselling' to the intervention will increase the benefits

        4. Improvements in knowledge will translate to improvements in QOL and positive IPs.
    

Intervention name(s): Educational Booklet (BK); Formal Counselling (CB)
Intervention type(s): Behavioral; Other
Intervention description(s): The information booklet provides age appropriate explanation about SCD: inheritance patterns for the trait and common sickle cell disorders in the Jamaican population. It includes manifestations, complications and the necessary preventive and treatment advice. In addition, issues that are common to adolescents including sexual activity, contraceptive use, drug usage, career advice and developmental changes common to persons with the disease are also discussed.; The study coordinator will have a face to face counselling session, lasting about 30 minutes, with the adolescent and/or caregiver. This will include the use of the educational booklet as an education tool, as well as a thorough discussion on the disease process; its manifestations, effects, and specific concerns during the adolescent period; as well as clarification of common myths and misconceptions about the disease.
Allocation: Randomized
Intervention model: Factorial Assignment
Masking: None (Open Label)
Keywords: Educational intervention; Formal Counselling; Knowledge; Illness Perception