Sara Ahola Kohut

• PhD, CPsych
• PhD at SickKids

Background The transition from pediatric to adult health care marks a complex and pivotal process for adolescents and young adults with inflammatory bowel disease (IBD). This group requires support regarding disease self-management, skill development, and system navigation in preparation for transition. Evidence-based interventions are needed to pr...

BACKGROUND Inflammatory bowel diseases (IBD) are lifelong conditions affecting physical and psychosocial wellbeing. Youth with IBD experience unique psychosocial challenges (e.g. increased risk of isolation and psychiatric conditions, decreased self-efficacy), which are associated with difficulties in disease management, disease symptoms, and trans...

Background and objectives Sickle cell disease (SCD) is hallmarked by recurrent episodes of severe acute pain and the risk for chronic pain. Remote peer support programs have been shown to effectively improve health outcomes for many chronic conditions. The objective of this study was to examine the feasibility and acceptability of an online peer me...

Background Juvenile Idiopathic Arthritis (JIA) is a chronic pediatric illness, whereby youth experience physical, emotional and psychosocial challenges that result in reduced health related quality of life (HRQL). Peer mentoring has been shown to improve disease self-management in adults with chronic conditions, with mixed results in younger popula...

Objective To explore participants’ shared experience attending a pilot mindfulness-based retreat (MBR) intervention supporting the psychological well-being of mothers of pediatric heart transplant (HTx) recipients. Methods A qualitative description approach was used within a larger hybrid mixed-methods pilot study evaluating the implementation-eff...

Background Inflammatory bowel disease (IBD) is a chronic autoimmune disease often diagnosed during adolescence. IBD negatively impacts all aspects of health-related quality of life, resulting in physical, emotional, social, school, and work functioning challenges. Adolescents have identified the need for peer support in managing their disease and p...

Objectives This pilot hybrid study aimed to evaluate the implementation-effectiveness of a mindfulness-based retreat (MBR) for mothers of pediatric heart transplant (HTx) recipients. Method The study used a convergent parallel mixed methods design. A purposive sample of 16 mothers was recruited from the Heart Transplant Program of a leading Canadi...

Background Inflammatory bowel disease (IBD) is a chronic, immune-mediated inflammatory condition of the digestive tract associated with substantial psychosocial difficulties. Treatment often focuses on medications but may also include surgical approaches (e.g., intestinal ostomy). Unfortunately, literature regarding the psychosocial implications of...

Objective Chronic pain often clusters in families with up to 50% of parents of youth with chronic pain having chronic pain themselves. Interventions for pediatric chronic pain often involve parents, yet parental chronic pain and stress are rarely addressed. Acceptance and commitment therapy (ACT)-based interventions are efficacious for adult chroni...

The “Roundtable on Young Adults with Inflammatory Bowel Diseases (IBD)” is a year-long learning community organized by the Crohn’s and Colitis Young Adults Network with monthly discussions between healthcare professionals, patients, and community-based partners. The group aims to improve outcomes for the young adult IBD patient population. The roun...

Background Childhood-onset Systemic Lupus Erythematosus (cSLE) is an autoimmune disease associated with fatigue, mood symptoms, and pain. Fortunately, these symptoms are potentially modifiable with psychological intervention such as cognitive-behavioral therapy (CBT). The Treatment and Education Approach for Childhood-onset Lupus (TEACH) program is...

Background: Despite evidence of the long-term implications of unrelieved pain during infancy, it is evident that infant pain is still under-managed and unmanaged. Inadequately managed pain in infancy, a period of exponential development, can have implications across the lifespan. Therefore, a comprehensive and systematic review of pain management...

Transition from pediatric to adult health care is a complex process that calls for complex interventions and collaboration between health care teams and families. However, many inflammatory bowel disease (IBD) clinical care teams do not have the resources to implement rigorous transition programs for youth. This review provides a description of the...

Chronic gastrointestinal disorders are prevalent in youth worldwide. The chronicity of these conditions often results in their persistence into adulthood. Challenges typically faced by young people transitioning to adulthood are often exacerbated in those with chronic gastrointestinal disease. Increased awareness of these challenges among health ca...

Introduction Mothers are often the primary caregivers for children requiring heart transplantation. Given that a mother’s ability to successfully cope with the demands of her caregiving role may be predictive of positive familial psychosocial outcomes, it is critical that maternal coping is assessed and supported in paediatric healthcare. Mindfulne...

Background Transition in care is defined as the “purposeful and planned movement of adolescents and young adults with a chronic medical condition from pediatric to adult-oriented healthcare systems/care providers.” Currently, there are no Level 1 evidence-based interventions to improve the care of transitioning adolescents and young adults (AYAs) w...

To adapt an existing virtual family-based mental health intervention learning platform (I-InTERACT-North), using participatory action research design, to meet the needs of parents and children with congenital, neonatal, and neurodevelopmental conditions that impact development. A purposive sample of parent knowledge users recruited from a large ped...

Aim: Psychotic disorders are associated with excess morbidity and premature mortality. Contributing factors include tobacco smoking, low physical activity, and poor nutrition. This study tested a Technology-Enabled Collaborative Care model to improve health behaviours among youth with early psychosis. Methods: A feasibility study among youth (ag...

Background: Mindfulness is our innate capacity to pay full, conscious, and compassionate attention to something in the moment. It is also a skill that can be strengthened by mental practice. More recently, mindfulness-based interventions (MBIs) are identified within clinical practice guidelines as an intervention in the treatment of certain symptom...

Introduction: The Pain Coping Questionnaire (PCQ) has support for its validity and reliability as a tool to understand how a child copes with pain of an extended duration. However, measure length may limit feasibility in clinical settings. Objectives: The primary goal of this study was to develop a short-form (PCQ-SF) that could be used for scre...

Exploring factors related to resilience in youth with inflammatory bowel disease may elucidate modifiable risk factors and inform interventions. Yet, how resilience factors may impact positive adaptation for youth with inflammatory bowel disease is not clear. We conducted an exploratory qualitative study on specific factors that bolster resilience...

Parents of children with inflammatory bowel disease (IBD) are important members of their healthcare team and influence their child’s adaptation to disease. The primary aim of this research was to test the feasibility and acceptability of a three-session online parent workshop based on acceptance and commitment therapy (ACT) and address concerns abo...

Adolescence is a sensitive period of development when the influence of peers is most intense, and adolescents focus on developing their peer relationships and identity outside of their parents. It is also the period when health risk behaviours (e.g. smoking) first arise; and for adolescents with chronic illnesses, peer relationships may be disrupte...

Children and adolescents with symptoms of mental health disorders often present to primary care settings. In the context of the coronavirus disease 2019 pandemic, mental health symptoms in children, adolescents, families, and health care clinicians are rising. Mindfulness is an approach to improve both mental and physical health that can be practic...

Objective: We examined feasibility and acceptability of an adapted telepsychological parent-child intervention to improve parenting skills and reduce emotional and behavioural difficulties in Canadian families of children at-risk for poor neurodevelopment given congenital or neonatal conditions. Preliminary program efficacy outcomes are also descri...

Background: There is growing consensus that pain in pediatric inflammatory bowel disease (IBD) is not fully explained by disease-related processes. However, previous studies have largely measured individual biological, psychological, or social risk factors for pain in isolation. Further, not all youth with IBD presenting to clinic will report prese...

Aim Individuals with psychotic disorders have poorer health outcomes and die earlier due to cardiovascular diseases when compared to healthy populations. Contributing factors include low levels of physical activity, poor nutrition and tobacco smoking. Currently, patients navigate a fragmented health‐care system to seek physical and mental health se...

Background Pain is a common symptom in pediatric inflammatory bowel disease (IBD) and is associated with poor health outcomes, yet additional knowledge about the psychosocial correlates of pain is needed to optimize clinical care. The purpose of this study is to systematically review the psychosocial factors associated with pain and pain impact in...

The aim of the study is to explore the feasibility and initial outcomes of a mindfulness-based group intervention (MBI) for adolescents with inflammatory bowel disease (IBD). A mixed-methods uncontrolled study using an adapted 8-week group MBI for adolescents with IBD was conducted at a pediatric tertiary hospital. Primary outcomes focused on feasi...

Objectives: The aim of this prospective cross-sectional study was to examine perfectionism, disease self-management, and psychosocial outcomes in a sample of adolescents with inflammatory bowel disease (IBD). Methods: Adolescent patients with IBD and caregivers were enrolled in the study. Patients completed the Child and Adolescent Perfectionism...

Introduction Juvenile idiopathic arthritis (JIA) negatively affects adolescents’ everyday activities. To address the need for innovative, effective, convenient, low-cost psychosocial self-management programmes, we developed an Irish version of Canadian Teens Taking Charge (TTC) and integrated it with Skype-based peer support iPeer2Peer (iP2P). Obj...

Headache hygiene refers to self-management behaviors and practices aimed at reducing headache-related disability and improving self-efficacy. Although self-management interventions have an established place in the management of a wide range of chronic conditions, there is still not a standardized approach to this in pediatric headache. In this arti...

Background Oster's (2005) ontogenetic perspective on the development of emotional expressions in infants holds that infants’ facial and vocal expressions evolved to serve crucial communicative functions in infancy and contribute to infants’ survival. Infants’ facial expressions should be contextualized by their own developmental stage rather than p...

Background Mindfulness-Based Interventions (MBIs) can improve mental health and well-being in adolescents with chronic illnesses. However, there are many barriers such as reduced mobility and distance which compromise accessibility to MBIs. Objective The aim of this study was to determine the effectiveness of the Mindful Awareness and Resilience S...

Parenting a child with chronic pain can be stressful and impact parent functioning in a variety of areas. Several studies have examined mindfulness-based interventions (MBIs) for parents of children with different health and mental health conditions. However, no studies to date have examined MBIs for parents of children with pain conditions. This s...

Mindfulness-based interventions (MBIs) have been shown to improve health and well-being in adolescents with chronic illnesses. Because they are most often delivered in person in a group setting, there are several barriers that limit access to MBIs for youth with limited mobility or who cannot access in-person MBIs in their communities. The objectiv...

Mindfulness-based interventions (MBIs) have been shown to improve health and well-being in adolescents with chronic illnesses. Because they are most often delivered in person in a group setting, there are several barriers that limit access to MBIs for youth with limited mobility or who cannot access in-person MBIs in their communities. The objectiv...

Primary objective: This study aimed to create a specific questionnaire (Parent Experiences Questionnaire) about early experiences, service involvement, and needs of children and parents following neonatal brain injury that could be used to inform clinical care and needed interventions. Research design and methods: A mixed-method design was utilized...

Background: To support adolescents through transition from pediatrics to adult care, health care providers and families help teens gain knowledge and develop self-management skills. Peer mentoring can provide meaningful support and has been associated with improved health outcomes in patients with other chronic conditions. Peer mentoring is an app...

Chronic pain can lead to significant negative outcomes across many areas of life. Recently, mindfulness-based interventions (MBIs) have been identified as potentially effective tools for improved pain management among adolescents living with pain. This study aimed to explore the experience of adolescents who participated in an eight-week mindfulnes...

Background: Eight-week mindfulness-based interventions (MBIs) have a beneficial impact on mental health and well-being in adolescents with chronic health conditions. Usually delivered in person in a group setting, these programs are difficult to access for teens with disabilities or who do not have in-person MBIs available in their communities. O...

Background: Adolescents living with chronic conditions often portray themselves as "healthy" online, yet use the Internet as one of their top sources of health information and social communication. There is a need to develop online support programs specific to adolescents with chronic conditions in order to provide a private space to discuss conce...

Background: Mindfulness-based interventions (MBIs) have emerged as a promising strategy for individuals with a chronic illness, given their versatility in targeting both physical and mental health outcomes. However, research to date has focused on adult or community-based populations. Objectives: To systematically review and critically appraise...

BACKGROUND Eight-week mindfulness-based interventions (MBIs) have a beneficial impact on mental health and well-being in adolescents with chronic health conditions. Usually delivered in person in a group setting, these programs are difficult to access for teens with disabilities or who do not have in-person MBIs available in their communities. OBJ...

Objective : To explore the perceived benefits and challenges of acting as a young adult peer mentor to adolescents with chronic illness. A qualitative descriptive study, using interviews and a focus group, explored the perceptions of young adult peer mentors following participation in the iPeer2Peer program, a Skype-based peer-mentorship program f...

Objectives: Pediatric chronic pain is a major health issue which can lead to significant interference in daily functioning. Mindfulness-based interventions (MBI's), which emphasize acceptance rather than control of pain, have gained increasing attention as a viable treatment option among adults with chronic pain. The effectiveness of MBIs for chro...

Background: Mindfulness based interventions (MBI) have emerged as a promising treatment for individuals with chronic diseases, such as inflammatory bowel disease (IBD), given their versatility in targeting both physical and mental health outcomes. MBI studies in adolescents with various chronic diseases are just emerging, with most showing positive...

This article endeavored to determine the topics of discussion during open-ended peer mentoring between adolescents and young adults living with chronic illness. This study occurred alongside a study of the iPeer2Peer Program. Fifty-two calls (7 mentor-mentee pairings) were audio recorded, transcribed verbatim, and analyzed using inductive coding wi...

Background Adolescents with Juvenile Idiopathic Arthritis (JIA) are at risk for physical, emotional, social and role challenges that negatively impact quality of life. Peer mentoring has been shown to improve positive health behaviours in adolescents with chronic disease while simultaneously providing social support. The objectives of this paper ar...

Aims of Investigation: To determine characteristics of effective vs less effective peer mentors to aid in the development of objective selection criteria for acceptance as a mentor into iPeer2Peer Program for youth with chronic illness. The iPeer2Peer Program is a Skype-based peer-mentorship program that provides modeling and reinforcement by young...

Adolescents with chronic pain are often socially isolated, having never met others with chronic pain, and often feel misunderstood by healthy peers. Adolescence is a sensitive period for developing one's sense of self and autonomy, which often occurs in the context of peer relationships. This developmental process is disrupted in adolescents when t...

Background: Infant pain has been historically under-managed. Review question: This review assessed 24 different ways of reducing young children's pain during medical procedures without using drugs, such as using a pacifier, distracting the child, and rocking a child. We analysed studies separately for babies who were born preterm, full-term newborn...

Mindfulness-based stress reduction (MBSR) approaches are an effective treatment for individuals with chronic pain, however research has largely focused on adult populations. MBSR approaches should also help reduce pain and improve function among adolescents with chronic pain, particularly given the success of MBSR programs for adolescents with othe...

Adolescence is a sensitive period for developing one’s sense of self, which often occurs in the context of peer relationships. Peer support within health care has the potential to positively influence health outcomes, particularly for adolescents living with chronic illness. In this chapter we review and describe the literature on peer support inte...

Background Sleep problems are common among children with chronic illnesses such as Juvenile Idiopathic Arthritis (or JIA). However, little is known about the frequency and severity of sleep disturbance(s) and the factors that are associated with sleep problems in children with JIA. The mechanism(s) of the relationships characterizing the developmen...

Adolescence is a sensitive period for developing one’s sense of self, which often occurs in the context of peer relationships. Peer support within health care has the potential to positively influence health outcomes, particularly for adolescents living with chronic illness. Objectives: To systematically review and describe the literature on peer s...

Background: The transition from pediatric to adult health care can be challenging for adolescents with chronic illnesses. As a result, many adolescents are unable to transfer to adult health care successfully. Adequate measurement of transition readiness and transfer satisfaction with disease management is necessary in order to determine areas to t...

Introduction: Perfectionism is a multidimensional construct comprised of self-oriented perfectionism (SOP: pursuing personal standards of perfection) and socially prescribed perfectionism (SPP: the belief that others demand perfection from the self). Little is known about the relationship between perfectionists and chronic pain in children and adol...

Background Depressive symptoms are common in adolescence and young adulthood; however, their prevalence in childhood-onset systemic lupus erythematosus (cSLE) is unknown. Objective The objective of this study was to examine the prevalence of depressive symptoms and their association with disease characteristics in children, adolescents, and young...

Facial expressions during infancy are important to examine, as infants do not have the language skills to describe their experiences. This is particularly vital in the context of pain, where infants depend solely on their caregivers for relief. The objective of the current study was to investigate the development of negative infant facial expressio...

Seasonal and nonseasonal depression symptoms often emerge during adolescence, although it is unclear if these two issues differ on key adolescent cognitive vulnerability and peer relation variables. This study compared eating attitudes, cognitive coping styles, and peer victimization among adolescents with symptoms of seasonal and nonseasonal depre...

Background: Infant acute pain and distress is commonplace. Infancy is a period of exponential development. Unrelieved pain and distress can have implications across the lifespan. This is an update of a previously published review in the Cochrane Database of Systematic Reviews, Issue 10 2011 entitled 'Non-pharmacological management of infant and yo...

Acute pain and distress during medical procedures are commonplace for young children. To assess the efficacy of nonpharmacological interventions for acute procedural pain in children up to three years of age. Study inclusion criteria were: participants <3 years of age, involved in a randomized controlled or crossover trial, and use of a 'no treatme...

Unlabelled: Potentially significant numbers of infants hospitalized in Neonatal Intensive Care Units (NICUs) and Pediatric Intensive Care Units (PICUs) experience chronic pain. However, the phenomenon of chronic pain in infancy has neither been defined nor described adequately by researchers. To stimulate and focus further work in the area, the pu...

Unlabelled: The Neonatal Facial Coding System (NFCS) is widely accepted as a measure of infant pain-related distress in known pain-specific contexts. It has clearly shown the ability to distinguish between facial reactivity in no-pain and pain-related situations. The primary purpose of this study was to explore whether NFCS differentiates between...

Objectives: The Pain Coping Questionnaire (PCQ) has been demonstrated to be a valid and reliable tool to understand how a child copes with pain of an extended duration. The primary objective of the present analysis was to develop a reliable and valid short-form that could be utilized for screening how children cope with pain of an extended duration...

Expertise in recognizing facial identity, and, in particular, sensitivity to subtle differences in the spacing among facial features, improves into adolescence. To assess the influence of experience, we tested adults and 8-year-olds with faces differing only in the spacing of facial features. Stimuli were human adult, human 8-year-old, and monkey f...