RESUMO
BACKGROUND: Families of refugee background have complex, multigenerational mental health and developmental needs that are not accounted for in current programming frameworks in Canada. Providing appropriate support services and educational resources that address the unique concerns of families of refugee background will allow for improved family cohesion and developmental outcomes for children. Parenting programs have been shown to be successful in improving parental stress, parental efficacy, and children's mental health and well-being. This study gathers data about the experiences of caregivers of refugee background in order to develop a novel, multi-dimensional parenting program model using Community-Based Participatory Research (CBPR) principles. METHODOLOGY: This was a qualitative, CBPR study using a formative research framework. In-depth interviews (IDIs) were conducted with caregivers of refugee background and service providers that work closely with this population. Data were recorded, transcribed, and coded using deductive and inductive coding methods by two independent coders. RESULTS: A total of 20 IDIs were conducted (7 caregivers and 13 service providers). The main topics that were identified to be incorporated into the program include: features of child development, how to address resettlement issues, child advocacy, and parenting after resettlement. Participants felt that tackling language barriers, addressing the overlapping responsibilities of caregivers attending the sessions, providing incentives, increasing awareness of the program, and using an anti-racist and anti-oppressive approach was key to the program's success. Participants emphasized the need for trauma-informed mental health supports within the program model. CONCLUSION: This study describes the key considerations for a novel parenting program for families of refugee background, by engaging them as key stakeholders in the program design process. Future iterations of this project would involve a pilot and evaluation of the program.
RESUMO
Hyperornithinemia-hyperammonemia-homocitrullinuria (HHH) syndrome is a rare metabolic autosomal recessive urea cycle disorder. Only about 100 patients have been reported in the literature. As the population survives into reproductive years, pregnancy management becomes a new challenge for this clinicians. To our knowledge, there are less than three patients with successful pregnancies and deliveries found in the literature with no specific consensus on management or recommendations for HHH syndrome. We reviewed the current literature regarding pregnancy outcomes, combine it with our experience managing a patient through two successful pregnancies and identify a new concern of fetal intrauterine growth restriction. From this, recommendations for pregnancy management are made, including a detailed protocol for clinicians to use for disease management at delivery and in the post-partum period.