Pain Narratives in Children with Sickle Cell Disease (SCD)

Pain Narratives in Children with Sickle Cell Disease (SCD)

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This study aims to assess wellbeing (i.e., pain, anxiety, distress) in children and young adults who have, and have not, undergone a transplant. We are recruiting individuals with SCD ages 8-25, and their parent/caregiver from across Canada to partake. This study has been designed to be completed online to ensure convenience and ease for all participants. Those interested contact fsmschul@ucalgary.ca for more information

  1. Youth and young adults will complete online questionnaires that ask about their pain, quality of life, disease characteristics, perceived discrimination, peer relationships, and other psychological factors such as anxiety, sleep, and depression. This takes approximately 35 minutes to complete.
  2. We will ask their parent/caregiver to complete a similar questionnaire about their pain, quality of life, peer relationships, and psychological factors, such as anxiety and depression. We will also ask them to answer questions about their own pain, and quality of life.
  3. Individuals may be asked to take part in a 1-hour audio-recorded interview to understand their feelings and memories about the pain they experienced in the past and present.
  4. We may ask parents/caregivers to take part in a separate audio-recorded interview. We will ask the parent/caregiver to tell us about their memories and experiences related to their child’s pain experience.

As a thank you to those who participate in our study, we will be providing an honorarium for every survey and phone interview completed. Each individual (youth and parent/caregiver) will be eligible to receive up to $30 as a thank you. After the completion of a survey, our research team will send a $15 e-gift card to the participant, and if they partake in the additional phone interview they will receive an additional $15 e-gift card.

Our research team recognize that individual’s with SCD have been underserved in healthcare research and we aim to begin bridging this gap. This study may have the capacity to make tangible change, both in healthcare settings and in day to day society. What we learn from this proposed study may incite future research in SCD, and other conditions, to explore how intersectional medicine is warranted in order to establish better treatment, disease trajectory, and care options for individuals.


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