[Visions of recovery in residential mental health services in a region of Quebec]. / Les visions du rétablissement dans des services résidentiels en santé mentale d'une région québécoise.

Objective Following a reorganization in the housing sector of mental health services in a region of Quebec, this descriptive study assessed the perceived integration of recovery principles according to service users (n=25), managers of residential facilities (n=19) and social and health care professionals (n=30). Method All participants completed the Recovery Self-Assessment. Service users also filled the Satisfaction with Life Domains Scale. Additional qualitative questions were asked in a written format. Results Most service users were satisfied overall with their current residence but noted that intervention options and addressing sexual needs could be improved. Clinicians perceived significantly less integration of the various dimensions of recovery than the two other groups (p < 0.001). All groups identified that persons with mental illness should be more involved in service planning in residences. Conclusion Integrating the perspectives of different key stakeholders highlighted the need to continue to work collaboratively to support a recovery process in housing facilities and involve more service users.

Factors impacting the transition to adulthood of youth with fragile X syndrome and their families: Facilitators, obstacles and needs.

BACKGROUND: The transition from school to adulthood is a critical time for families of youth with disabilities. Few studies have focused on the needs of families of youths with fragile X syndrome. This syndrome is often associated with intellectual disability and autism spectrum disorder, which creates specific needs that must be documented to improve transition planning. The aim of the current study was to document factors impacting transition planning and describe parents' experiences during this period. METHOD: Individual interviews were conducted with thirteen parents of young people with fragile X syndrome. Two research team members analysed the interviews separately. RESULTS: Factors related to the youth, the youth's family and the steps taken by the various institutions involved during this period seem to impact this transition and contributed to families' anxiety. A clear, uniform transition planning process, initiated early enough to have time for exploratory work placements, and gradual integration emerged as crucial facilitators for the parents in this study. CONCLUSIONS: Understanding the reality of people with fragile X syndrome and their families will help to adapt services and develop concrete plans for their future.

How to facilitate transition to adulthood? Innovative solutions from parents of young adults with profound intellectual disability.

BACKGROUND: At age 21, access to specialised services for youth with profound intellectual disability is reduced. Few studies have focused on parents' views concerning potential solutions to ease the transition to adulthood, and most existing solutions target young adults with less severe intellectual disability. The aim of this study is to propose realistic solutions to meet the needs of young adults with profound intellectual disability and their families during and after the transition to adulthood. METHOD: Using a descriptive qualitative design, two individual semi-structured interviews were conducted with 14 parents. RESULTS: Ideas for innovative solutions included responses to parents' informational, material, intellectual and emotional needs during and after transition period. The majority of these solutions involve knowledge sharing, improved inter-institutional collaboration and social participation of young adults, and offering parents emotional support. CONCLUSION: Some solutions could be implemented within existing transition planning programs, based on their strengths and limitations.

Specific needs of families of young adults with profound intellectual disability during and after transition to adulthood: What are we missing?

INTRODUCTION: At the age of 21, the trajectory of services offered to youth with profound intellectual disability (ID) change significantly since access to specialised services is more limited. Despite the desire of parents to avoid any impact on their child, several factors can influence the course of this transition. However, there is little research on facilitators and obstacles to the transition to adulthood, and impacts on people with a profound ID. It is therefore difficult to provide solutions that meet their specific needs. OBJECTIVE: The study aimed to document the needs of parents and young adults with profound ID during and after the transition to adulthood by exploring their transitioning experience and factors that influenced it. METHOD: Using a descriptive qualitative design, two individual semi-structured interviews were conducted with fourteen (14) parents of young adults aged between 18 and 26 with a profound ID. RESULTS: At this point, many material, informative, cognitive and emotional needs of young adults and their parents are not met. Obstacles, mainly organisational, persist and result in a particularly difficult transition to adulthood experience. CONCLUSION: By knowing the specific needs of these families, it is possible to develop and implement solutions tailored to their reality. WHAT THE PAPERS ADDS?: The transition to adulthood is a critical period for families with young adults with an intellectual disability (ID), a reality observed internationally. Current literature on all levels of ID suggests some barriers to transition that lead to negative impacts on both parents and young adults with ID. However, presently, very little research exists on the reality of families of young adults with profound ID and factors influencing transition to adult life. Most of studies target people with mild to moderate ID. Considering the significant disabilities of people with profound ID, it is possible to imagine that their experience of transition will be even more difficult and they will present specific needs. The lack of understanding of these needs makes it difficult to introduce solutions tailored to their reality. The results of this current study suggest that many needs of young adults with profound ID and their parents are not met despite existent transition planning services. Transition to adulthood seems particularly difficult for these families who face many challenges. Parents in this study proposed different obstacles during transition to adulthood that could be improved for creation of future solutions adapted to their reality.

Using an evidence-based online module to improve parents' ability to support their child with Developmental Coordination Disorder.

BACKGROUND: Developmental Coordination Disorder (DCD) is a prevalent neurodevelopmental disorder. Best practices include raising parents' awareness and building capacity but few interventions incorporating these best practices are documented. OBJECTIVE: To examine whether an evidence-based online module can increase the perceived knowledge and skills of parents of children with DCD, and lead to behavioral changes when managing their child's health condition. METHODS: A mixed-methods, before-after design guided by the Theory of Planned Behavior was employed. Data about the knowledge, skills and behaviors of parents of children with DCD were collected using questionnaires prior to completing the module, immediately after, and three months later. Paired T-tests, sensitivity analyses and thematic analyses were performed on data as appropriate. RESULTS: One hundred-sixteen, 81 and 58 participants respectively completed the three questionnaires. For knowledge and skills, post- and follow-up scores were significantly higher than baseline scores (p < 0.01). Fifty-two (64%) participants reported an intention to change behavior post-intervention and 29 (50%) participants had tried recommended strategies at follow-up. Three themes emerged to describe parents' behavioral change: sharing information, trialing strategies and changing attitudes. Factors influencing parents' ability to implement these behavioral changes included clear recommendations, time, and 'right' attitude. Perceived outcomes associated with the parental behavioral changes involved improvement in well-being for the children at school, at home, and for the family as a whole. CONCLUSIONS: The online module increased parents' self-reported knowledge and skills in DCD management. Future research should explore its impacts on children's long-term outcomes.