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Trisomy 18 syndrome, also known as Edwards syndrome, is the second most common autosomal chromosome syndrome after Down syndrome. Trisomy 18 is a serious medical disorder due to the increased occurrence of structural defects, the high neonatal and infant mortality, and the disabilities observed in older children. Interventions, including cardiac surgery, remain controversial, and the traditional approach is to pursue pure comfort care. While the medical challenges have been well-characterized, there are scant data on the parental views and perspective of the lived experience of rearing a child with trisomy 18. Knowledge of the parental viewpoints can help clinicians guide families through decision-making. Our aim was to identify parents' perspectives by analyzing a series of narratives. In this qualitative study, we collected 46 parent narratives at the 2015 and 2016 conferences of the Support Organization for Trisomy 18 & 13 (SOFT). The participants were asked to "Tell us a story about your experience." Inductive content analysis and close reading were used to identify themes from the stories. Dedoose, a web-based application to analyze qualitative data, was used to code themes more systematically. Of the identified themes, the most common included Impact of trisomy 18 diagnosis and Surpassing expectations. Other themes included Support from professionals, A child, not a diagnosis, and Trust/lack of trust. We examined the voice and the perspectives of the parents in their challenges in caring for their children with this life-limiting condition. The exploration of the themes can ideally guide clinicians in their approach to the counseling and care of the child in a shared decision-making approach.

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Latino adolescent sexual minority men (ASMM) are at high risk of HIV. Limited research has explored the impact of parent-adolescent communication and beliefs on PrEP adoption among Latino ASMM. Our objective was to examine how parental support and beliefs influence decisions regarding PrEP use. We analyzed PrEP-related attitudes and behaviors within a national cohort of 524 Latino ASMM aged 13-18. Out of the participants, 60.5% were suitable for PrEP. Among them, 59.7% were in the precontemplation stage (stage 1), indicating a lack of willingness or belief of unsuitability. However, 86.4% moved to reach the contemplation stage (stage 2), demonstrating willingness and suitability for PrEP. Only 16.8% moved on to the PrEParation stage (stage 3), indicating their intention to start using PrEP. Furthermore, 4.3% progressed to the PrEP action stage and initiation (stage 4), signifying they had received a prescription, and all reported high adherence (stage 5). Factors associated with reaching later stages included older age, parental support of sexual orientation, and previous HIV/STI testing. The qualitative findings revealed diverse attitudes towards parental involvement in PrEP care among Latino ASMM, including positive, negative, and ambivalent perspectives. Notably, Spanish-speaking participants expressed specific barriers to PrEP communication between ASMM and their parents. Given that parental support and attitudes emerged as significant factors in both our quantitative and qualitative findings, it is evident that public health approaches aiming to disseminate education and awareness about PrEP to parents and families could alleviate the burden on adolescents to educate their parents and enhance support.

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PURPOSE: To explore the impact of the online ENVISAGE program for parents of children with neurodevelopmental disabilities (NDD) on parents' perception of themself, their child with a disability, and their family, as well as to explore experiences of participating in the program in Croatia. METHODS: In this before-after discourse analysis study, participants took part in the five-week ENVISAGE program. There were two semi-structured interviews for each participant: within one month before and after participating in the program. The proportions of positive, neutral, and negative sentences about themself, their child, and their family from two interviews were compared on an individual and group level. The perceived changes and experiences with the program were also analyzed qualitatively. RESULTS: Data from thirteen participants were included. From the three pre-determined discourse categories (self, child, and family), most changes were observed in parents' perception of self (average increase in positive views of 8.8% and decrease in negative of 5.3%). Qualitative results showed multiple positive self-perceived impacts on parents' lives. Participants' experiences with ENVISAGE were consistently positive; all believed they benefited from the program. CONCLUSIONS: The results support our assumption that participation in ENVISAGE positively affects multiple areas of life, particularly parents' views of themself.

ENVISAGE is an online, 5-week empowerment program for parents of children with neurodevelopmental disabilities that was tested for the first time in Croatia in this study.Results show that ENVISAGE mostly led to the improvements in the perception of self and their child with a disability.For all parents, ENVISAGE was a positive experience and a program they would recommend to other parents.

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Mellow Babies aims to improve mothers' mental wellbeing and the quality of their interactions with their baby. The feasibility of a definitive trial of Mellow Babies was assessed using a waiting-list randomised pilot trial (Clinicaltrials.gov: NCT02277301). Mothers with substantial health/social care needs and a child aged <13 months were randomly allocated either to a 14-week Mellow Babies programme or to receive usual care whilst on a waiting list for the intervention. Rates of recruitment and retention as well as participants' views of their experience in this study were recorded. Outcomes were parenting behaviour, assessed by the blind-rated Mellow Parenting Observation System (primary) and self-report maternal wellbeing pre- and post-intervention/waiting period. We recruited 38 eligible participants: 36 (95%; 18 intervention, 18 control) completed baseline measures, and 28 (74%; 15 intervention, 13 control) provided post-intervention data. Two practitioners took part in feedback interviews. Intervention participants had significantly more positive interactions with their babies at post-intervention compared to those in the control group (p = 0.019), adjusted for pre-intervention scores. There was no significant improvement in mothers' mental wellbeing on any measure. A definitive trial of Mellow Babies is feasible and should include longer follow up of mothers and the opportunity for fathers to take part.

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High-risk infants are discharged home from hospital with increased care needs and the potential for the emergence of developmental disabilities, contributing to high levels of parental stress and anxiety. To enable optimal outcomes for high-risk infants and their families, developmental follow-up programs need to continue following hospital discharge. However, current follow-up care for high-risk infants is variable in terms of type, access and equity, and there seems to be a gap in existing services such as supporting the transition home, parental support, and inclusion of all at-risk infants regardless of causality. Routine follow-up that identifies developmental delays or neuromotor concerns can facilitate timely referral and access to targeted intervention during critical periods of development. The Kids+ Parent Infant Program (PIP) is a unique model of developmental follow-up that shares some characteristics with established programs, but also includes additional key elements for a seamless, wrap-around service for all high-risk infants and their families living in a regional area of Australia. This community-based program provides integrated assessment and intervention of infants, alongside parent support and education, embracing a holistic model that accounts for the complexity and interrelatedness of infant, parent, medical and developmental factors. By prioritising the well-being of high-risk infants and their families, the Kids+ PIP paves the way for improved developmental outcomes and provides an innovative model for developmental follow-up, with the potential for reproduction in other healthcare settings.

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Objective: Parent peer advocacy, mentoring, and support programs, delivered by parents with lived child protection (CP) experience to parents receiving CP intervention, are increasingly recognized internationally as inclusive practices that promote positive outcomes, but little is known about what shared characteristics exist across these types of programs and what variations may exist in service delivery or impact. This scoping review examines 25 years (1996-2021) of empirical literature on these programs to develop a systematic mapping of existing models and practices as context for program benefits and outcome achievement. Method: Studies were selected using a systematic search process. The final sample comprised 45 publications that addressed research on 24 CP-related parent peer advocacy and support programs. Data analysis explored how programs were studied and conceptualized and examined their impact on parents, professionals, and the CP system. Results: Substantial variation in program settings, target populations, aims, advocate roles, and underlying theoretical frameworks were identified. Across program settings, existing empirical evidence on impact and outcomes also varied, though positive impacts and outcomes were evident across most settings. Conclusions: Findings from this review highlight the need to account better for parent peer advocacy and support program variations in future practice development to ensure alignment with inclusive and participatory principles and goals. Future research is also needed to address current knowledge gaps and shed light on the impact of these differences on individual, case, and system outcomes.

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Background: As of 2021, more than 6000 children and youth in Canada were living with end-stage kidney disease (ESKD), for which kidney transplantation is considered the preferred treatment by health professionals. Research shows that living donor kidney transplantation (LDKT) has superior allograft and recipient survival compared to deceased donor kidney transplantation (DDKT). However, in a pediatric setting, the choice of LDKT or DDKT is a summative consideration of factors weighed carefully by the patient's family, health care team, and patient. Decision-making surrounding transplantation may be more complex for racial and ethnic minorities as culturally specific values and beliefs are interwoven within dominant understandings and concepts of health and accepted models of health care. For example, Chinese Canadians have an increased risk of ESKD, yet reduced access to LDKT compared to White patients, despite being the largest visible minority population in Canada. Objective: The objective of this qualitative study is to deepen our understandings of the decision-making process surrounding DDKT versus LDKT among parents of Chinese Canadian pediatric patients with chronic kidney disease (CKD). Design: Qualitative descriptive study design. Setting: The Nephrology Program at The Hospital for Sick Children in Toronto, Canada. Participants: Caregivers of Chinese Canadian patients with CKD, 18 years of age or older, and who spoke English, Cantonese, or Mandarin. Methods: One-on-one, semistructured interviews were conducted virtually, by a member of the research team and were audio-recorded and transcribed verbatim. Thematic analysis was used to explore participants' shared experience. Results: Seven interviews were conducted with 6 mothers and 1 father of 6 Chinese Canadian pediatric patients with CKD: 4 patients had undergone a kidney transplant, and 2 were not yet listed for transplant. Analysis of data highlighted that cultural influences affected whether parents shared with others about their child's illness and experience. The cultural understanding that it is inappropriate to burden others contributed to the creation of an isolating experience for participants. Cultural influences also impacted whether parents asked others to be a living donor as participants articulated this would place a physical burden on the living donor (e.g., potential risk to their health) and an emotional burden on the participant as they would be indebted to a willing donor. Ultimately, parents' decision to choose DDKT or LDKT for their patient-child was a result of evaluating both options carefully and within an understanding that the ideal treatment choice reflected what was best for all family members. Limitations: Findings reflect experiences of a small sample from a single recruitment site which may limit transferability. Conclusions: Parents in this study felt that they had access to the necessary evidence-based information to make an informed decision about the choice of DDKT versus LDKT for their child. Participant narratives described feeling isolated within cultural communities of family and friends and participants' suggestion of benefiting from increased support may guide future research directions. Practitioners can offer direct and indirect support to families, with recognition of the importance of cultural values and family-centered care on decision-making within families. Opportunities are needed for accessible, virtual social support platforms to increase parental feelings of culturally mediated peer support from parents who share similar experiences.

Contexte: En 2021, plus de 6000 enfants et jeunes au Canada vivaient avec une insuffisance rénale terminale (IRT), une affection pour laquelle la transplantation rénale est considérée comme le traitement préférentiel par les professionnels de la santé. La recherche montre que la transplantation d'un rein de donneur vivant (TRDV) présente des taux de survie du greffon et du receveur supérieurs à ceux de la transplantation d'un rein de donneur décédé (TRDD). En contexte pédiatrique, le choix entre la TRDV et la TRDD fait l'objet d'une évaluation sommative de facteurs soigneusement pesés par le patient, sa famille et l'équipe de soins. La prise de décision entourant la transplantation peut s'avérer encore plus complexe pour les personnes issues des minorités raciales et ethniques, car des valeurs et croyances spécifiques à la culture sont imbriquées dans les conceptions et concepts dominants de la santé et les modèles de soins acceptés. Les Canadiens d'origine chinoise, par exemple, présentent un risque accru d'IRT, mais leur accès à la TRDV est réduit par rapport aux patients d'origine caucasienne, bien qu'ils constituent la plus importante minorité visible dans la population Canadienne. Objectif: L'objectif de cette étude qualitative est d'approfondir notre compréhension du processus décisionnel entourant le choix entre la TRDD et la TRDV chez les parents de patients pédiatriques d'origine chinoise atteints d'insuffisance rénale chronique (IRC). Conception: Étude qualitative et descriptive. Cadre: Le program de néphrologie de l'Hospital for Sick Children de Toronto (Canada). Sujets: Des adultes proches aidants de patients Canadiens d'origine chinoise atteints d'IRC et parlant anglais, cantonais ou mandarin. Méthodologie: Des entrevues individuelles semi-structurées ont été menées en mode virtuel par un membre de l'équipe de recherche; les entrevues ont été enregistrées (audio) et transcrites textuellement. L'analyze thématique a été utilisée pour explorer l'expérience commune des participants. Résultats: Sept entrevues ont été menées auprès des parents (6 mères et un père) de 6 patients pédiatriques Canadiens d'origine chinoise atteints d'IRC: quatre avaient subi une greffe rénale, les deux autres n'étaient pas encore inscrits sur la liste pour une transplantation. L'analyze des données a révélé que les influences culturelles affectaient la façon dont les parents parlent de la maladie et de l'expérience de leur enfant avec d'autres personnes. La conception d'origine culturelle selon laquelle il n'est pas approprié d'accabler les autres a contribué à créer de l'isolement chez les participants. Les influences culturelles ont également interféré dans le fait de demander ou non à d'autres personnes d'être donneurs vivants; les participants ont expliqué que le don vivant imposait un fardeau physique au donneur vivant (p. ex., un risque pour sa santé) et un fardeau émotionnel au participant, car ceux-ci seraient redevables au donneur consentant. La décision des parents de choisir la TRDD ou la TRDV pour leur enfant aura finalement été le résultat d'une évaluation minutieuse des deux options, avec la perspective que le choix de traitement idéal reflétait ce qui était le mieux pour tous les membres de la famille. Limites: Ces résultats reflètent les expériences d'un faible échantillon de sujets provenant d'un seul centre, ce qui peut limiter la transférabilité. Conclusion: Les parents interrogés pour cette étude estimaient avoir eu accès aux informations factuelles nécessaires pour prendre une décision éclairée dans leur choix entre la TRDD et la TRDV pour leur enfant. Les récits des participants ont décrit leur sentiment d'isolement au sein des communautés culturelles de la famille et des amis; la suggestion des participants de bénéficier d'un soutien accru pourrait guider les orientations futures de la recherche. Les praticiens peuvent offrir un soutien direct et indirect aux familles en reconnaissant l'importance des valeurs culturelles et des soins centrés sur la famille dans la prise de décisions par les familles. Il est nécessaire de créer des plateformes de soutien social virtuelles et accessibles, afin que les parents aient le sentiment de bénéficier davantage du soutien culturel d'autres parents qui partagent des expériences similaires.

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BACKGROUND: Brain-based developmental disabilities (BBDDs) comprise a large and heterogeneous group of disorders including autism, intellectual disability, cerebral palsy or genetic and neurodevelopmental disorders. Parents caring for a child with BBDD face multiple challenges that cause increased stress and high risk of mental health problems. Peer-based support by fellow parents for a various range of patient groups has shown potential to provide emotional, psychological and practical support. Here, we aim to explore existing literature on individual peer-to-peer support (iP2PS) interventions for parents caring for children with BBDD with a view to (1) explore the impact of iP2PS interventions on parents and (2) identify challenges and facilitators of iP2PS. METHOD: An extensive literature search (January 2023) was performed, and a thematic analysis was conducted to synthesize findings. RESULTS: Fourteen relevant articles revealed three major themes regarding the impact of iP2PS on parents: (1) emotional and psychological well-being, (2) quality of life and (3) practical issues. Four themes were identified describing challenges and facilitators of iP2PS: (1) benefits and burden of giving support, (2) matching parent-pairs, (3) logistic challenges and solutions and (4) training and supervision of parents providing peer support. CONCLUSIONS: This review revealed that iP2PS has a positive impact on the emotional and psychological well-being of parents, as well as the overall quality of life for families caring for a child with a BBDD. Individual P2PS offers peer-parents an opportunity to support others who are facing challenges similar to those they have experienced themselves. However, many questions still need to be addressed regarding benefits of different iP2PS styles, methods of tailoring support to individual needs and necessity of training and supervision for peer support providers. Future research should focus on defining these components and evaluating benefits to establish effective iP2PS that can be provided as standard care practice for parents.

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INTRODUCTION: Parents' science support and adolescents' motivational beliefs are associated with adolescents' expectations for their future occupations; however, these associations have been mostly investigated among White, middle-class samples. Framed by situated expectancy-value theory, the current study investigated: (1) the associations between parents' science support in 9th grade and Latine adolescents' science intrinsic value, utility value, and STEM career expectations in 11th grade, and (2) whether these indicators and the relations among them differed by adolescents' gender and parents' education. METHODS: Study participants included Latine adolescents (n = 3060; Mage = 14.4 years old; 49% female) in the United States from the High School Longitudinal Study of 2009. RESULTS: Analyses revealed a significant, positive association between parents' science support and Latine adolescents' science utility value. Additionally, there was a significant, positive association between parents' science support and Latinas' science intrinsic value, but not for Latinos' science intrinsic value. Latine adolescents' science utility value, but not their science intrinsic value, predicted their concurrent STEM career expectations. Though there were no significant mean level differences in adolescents' science utility value or parents' science support based on adolescents' gender, the measure of adolescents' science intrinsic value varied across girls and boys. Finally, adolescents whose parents had a college degree received greater science support from parents compared to adolescents whose parents had less education than a college degree. CONCLUSION: Findings suggest parents' science support and adolescents' intrinsic and utility values have potential associations with Latine adolescents' STEM career expectations near the end of high school.

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As government-funded universal programs for new parents continue to expand, it is critical to investigate their short- and longer-term effects. The level of knowledge, especially on the effect of group-based interventions, is sparse. This study is the second report from a large trial of a widely implemented universal group-based parenting program in Denmark and includes outcomes on child socio-emotional problems and use of health services. A sample of 1701 unborn children from families representative within the area, were randomized to intervention or care as usual beginning November 2014. From these families, 1268 mothers and 999 partners (mean age 29.4 and 31.19, respectively; 6% migration background) filled in the Ages and Stages Questionnaire. Intention-to-treat-analyses showed fewer socio-emotional problems in the intervention group (between-group difference - 2.34, 95% CI [0.40, 4.30], d = - 0.13) as reported by mothers, but not partners, when children were 10 months old. This finding was transitory (no longer significant at 19 months). No effects were found on health care utilization. The previous report from this trial showed no effects on measures of parenting. In total, these findings serve the purpose of adjusting future expectations to the size and type of effect to be gained from a universal parent program in a resourceful setting. We conclude that even if the Family Startup Program (DK: Familieiværksætterne) 2 was liked, well implemented, and well attended by the parents, the positive effect on children's socio-emotional problems, was too modest to be the argument that can carry the weight of policy going forward. PUBLIC SIGNIFICANCE STATEMENT: This study examined the effects of the Family Startup Program (DK: Familieiværksætterne), a universal, group-based program to support parents during the transition to parenthood. Results showed a modest transitory preventive effect on children's socio-emotional problems and no effects on health care utilization. These findings adjust down previous expectations to the size and type of effects to be gained from universal group-based parent support in a well-resourced setting.

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OBJECTIVE: To explore the cost-effectiveness of a web-based support tool for parents of children with Juvenile idiopathic arthritis. METHODS: A multi-centred randomized controlled trial was conducted in paediatric rheumatology centres in England. The WebParC intervention consisted of online information about JIA and its treatment and a toolkit using cognitive-behavioural therapy principles to support parents manage their child's JIA. An economic evaluation was performed alongside the trial involving 220 parents. The primary outcome was the self-report Pediatric Inventory for Parents measure of illness-related parenting stress, with two dimensions: difficulty and frequency. These measures along with costs were assessed post intervention at 4 and 12 months. Costs were calculated for healthcare usage using a UK NHS economic perspective. Data was collected and analysed on the impact of caring costs on families. Uncertainty around cost-effectiveness was explored using bootstrapping and cost-effectiveness acceptability curves. RESULTS: The intervention arm showed improved average Pediatric Inventory for Parents scores for the dimensions of frequency and difficulty, of 1.5 and 3.6 respectively at 4 months and 0.35 and 0.39 at 12 months, representing improved PIP scores for the intervention arm. At both 4 and 12 month follow-up, the average total cost per case was higher in the control group when compared with the intervention arm with mean differences of £360 (95% CI £29.6 to £691) at 4 months and £203 (95% CI £16 to £390) at 12 months. The probability of the intervention being cost-effective ranged between 49% and 54%. CONCLUSION: The WebParC intervention led to reductions in primary and secondary healthcare resource use and costs at 4 and 12 months. The intervention demonstrated particular savings for rheumatology services at both follow-ups. Future economies of scale could be realised by health providers with increased opportunities for cost-effectiveness over time. TRIAL REGISTRATION: ISRCTN, ISRCTN13159730.

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BACKGROUND: This study assessed whether a relatively newly developed Parent and Infant (PIN) parenting support programme was cost-effective when compared to services as usual (SAU). METHODS: The cost-effectiveness of the PIN programme versus SAU was assessed from an Irish health and social care perspective over a 24-month timeframe and within the context of a non-randomised, controlled before-and-after trial. In total, 163 parent-infant dyads were included in the study (86 intervention, 77 control). The primary outcome measure for the economic evaluation was the Parenting Sense of Competence Scale (PSOC). RESULTS: The average cost of the PIN programme was €647 per dyad. The mean (SE) cost (including programme costs) was €7,027 (SE €1,345) compared to €4,811 (SE €593) in the control arm, generating a (non-significant) mean cost difference of €2,216 (bootstrap 95% CI -€665 to €5,096; p = 0.14). The mean incremental cost-effectiveness of the PIN service was €614 per PSOC unit gained (bootstrap 95% CI €54 to €1,481). The probability that the PIN programme was cost-effective, was 87% at a willingness-to-pay of €1,000 per one unit change in the PSOC. CONCLUSIONS: Our findings suggest that the PIN programme was cost-effective at a relatively low willingness-to-pay threshold when compared to SAU. This study addresses a significant knowledge gap in the field of early intervention by providing important real world evidence on the implementation costs and cost-effectiveness of a universal early years parenting programme. The challenges involved in assessing the cost-effectiveness of preventative interventions for very young children and their parents are also discussed. TRIAL REGISTRATION: ISRCTN17488830 (Date of registration: 27/11/15). This trial was retrospectively registered.

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BACKGROUND: Promoting physical activity (PA) and fundamental movement skills (FMS) in early childhood is necessary to address the high rates of inactivity in children. Parent support is a determinant of PA in children, however, parental intentions to support are not always translated into behavior resulting in an intention-behavior gap. PURPOSE: Positioned within the multi-process action control (M-PAC) framework, this study used an explanatory concurrent mixed-methods design to explore parents' intentions and support of PA and FMS during early childhood. METHODS: Parents (N=124) of children aged 3-4 years completed an online survey consisting of items assessing reflective (e.g., attitudes), regulatory (e.g., planning), and reflexive (e.g., habit) processes of M-PAC and intentions and support for child PA and FMS. A subset of parents (n=20) completed a semi-structured online interview guided by the M-PAC framework. RESULTS: Significantly more parents intended to support PA (71%) compared with FMS (44%; p<0.001) and successfully translated intentions into action for PA (57%) compared with FMS (27%; p<0.001). Discriminant function analysis showed parent behavior profiles for PA and FMS support were associated with a combination of reflective, regulatory, and reflexive processes, however, these differed based on support behavior. Qualitative findings highlighted parents' differential views on PA and FMS support and contextualized the psychological processes associated with each. CONCLUSIONS: Parent PA support interventions during early childhood should include strategies for supporting FMS. Interventions should prioritize fostering a combination of reflective, regulatory, and reflexive behaviors to translate intentions to support PA and FMS into behavior among parents of young children.

Promoting physical activity (PA) and fundamental movement skills (FMS) in early childhood is necessary to address physical inactivity in young children. Parent support is a known predictor of PA in children, however, parents who intend to support PA do not always follow through with these intentions. This is referred to as the intention­behavior gap. Applying the theoretical tenets of the multi-process action control framework, this study surveyed 124 parents of children aged 3­4 years on reflective (e.g., attitudes), regulatory (e.g., planning), and reflexive (e.g., habit) processes, intentions, and behaviors related to parent PA and FMS support. Follow-up interviews were completed with 20 parents to gain a deeper understanding of parent PA and FMS support behaviors. Survey findings showed that parents' intentions and support behaviors for their child's PA and FMS were associated with a combination of reflective, regulatory, and reflexive processes. Interview findings highlighted more favorable parent perspectives toward PA support compared with FMS and further explained the psychological processes associated with each. Future parent PA support interventions during early childhood should include FMS support strategies and foster a combination of reflective, regulatory, and reflexive behaviors to bridge the gap between intentions and support behaviors among parents of young children.

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This project documents the service outcomes that caregivers value most. A diverse group of caregivers, representing six regions of the United States, participated in two rounds of virtual one-hour focus groups. In round 1, participants identified what they hoped to gain from using behavioral health services for themselves, their families, and their child and discussed what made services a positive experience for them. They then reported their top-three most-hoped-for outcomes. In round 2, groups validated and refined summary findings from round 1. Caregivers prioritized service quality outcomes, primarily. They expressed a desire for an accessible, respectful, and supportive treatment environment, underpinned by well-trained and culturally responsive professionals. Caregivers also desire seamless cross-sector provider collaboration and care transitions, which integrate the insights and preferences of families and children themselves to craft a customized care plan. Priority outcomes not related to service quality included hoping to gain increased knowledge, resources, and tools and techniques to support the mental health needs of their children, to see their children improve their daily functioning and for their child develop more effective interpersonal communication skills. Caregivers also reported hoping to experience less stigma related to the mental health needs of their children and to achieve personal fulfillment for themselves and their children. Research, policies, and mental health services should prioritize and be designed to address the outcomes that matter to youth and families.

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BACKGROUND: Pediatric brain tumor survivors (PBTS) are at risk of physical, cognitive, and psychosocial challenges related to their diagnosis and treatment. Routine follow-up care as adults is therefore essential to their long-term health and quality of life. In order to successfully navigate to adult healthcare, it is recommended that youth develop transition readiness skills. Existing transition readiness interventions often focus on disease management. However, PBTS are also at risk of social competence and cognitive functioning challenges. In this paper, we describe the protocol of this pilot study and the methodology that will be used for the evaluation of the feasibility, acceptability, and preliminary efficacy testing of the first targeted transition intervention workshops specifically designed to meet the needs of PBTS and their caregivers. METHODS: This study will use a mixed method to evaluate three 1 ½-h workshops targeted for dyads (N = 40) of PBTS (14 years or older) and their parents. Dyads will be recruited via a community pediatric cancer organization and the long-term follow-up clinic of a large pediatric hospital. Participants will complete an online survey which includes the Transition Readiness Assessment Questionnaire (TRAQ) before and after the workshops. Each workshop will cover a specific topic related to PBTS transition readiness: disease management, social competence, and cognitive functioning. Workshops will follow the same structure: topic presentation, discussion by a post-transfer survivor or parent, teaching two strategies, and workshop evaluation. Workshops will be co-led by healthcare specialists and patient partners. Feasibility and acceptability will be assessed via recruitment, attendance, retention, and Likert scales, and they will be analyzed by describing and comparing rates. Satisfaction will be measured using satisfaction surveys and audio-recorded focus groups. Qualitative data will be described through thematic content analysis. In order to test the preliminary efficacy of this study, we will compare transition readiness skills pre- and post-workshops using paired samples T test and ANCOVA to examine the impact of workshop on TRAQ skills. DISCUSSION: Results of the study will inform refinement and future broader implementation of targeted transition readiness workshops for the specific needs of pediatric brain tumor survivors.

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This chapter qualitatively explored the impact of including parent liaisons (i.e., parents with lived experience caring for a child with complex needs, who support other caregivers in navigating child and family needs) in a case conferencing model for children with complex medical/social needs. Case conferences are used to address fragmented care, shared decision-making, and set patient-centered goals. Seventeen semi-structured interviews were conducted with clinicians and parent liaisons to assess the involvement of parent liaisons in case conferencing. Two main themes included benefits of parent liaison involvement (10 subthemes) and challenges to parent liaison involvement (5 subthemes). Clinicians reported that liaison participation and support of patients reduced stress for clinicians as well as family members. Challenges to liaison involvement included clinical team/parent liaison communication delays, which were further exacerbated by the COVID-19 pandemic. Parent liaison involvement in case conferences is perceived to be beneficial to children with complex needs, their families, and the clinical team. Integration of liaisons ensures the familial perspective is included in clinical goal setting.

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LAY ABSTRACT: Parents of autistic children have long reported feelings of isolation and increased stress during and after receiving their child's diagnosis. Increasing global prevalence of autism also calls for increased services and supports to meet the needs of these families, but most parents who live in low-resource settings still report exacerbated barriers. This may indicate the need for diversifying intervention delivery models to increase contextual fit and enhance implementation effects for different populations. For example, many parents have reported parent-to-parent (P2P) model to be a source of emotional support, advocacy, and knowledge related to their child's diagnosis, and practical advice. However, little is known about this topic due to the lack of synthesis of relevant autism literature. To address this gap, we conducted a literature review to gain a deeper understanding of how P2P support is used. We identified 25 studies based on our inclusion and exclusion criteria, which we coded to extract variables such as demographic information of participants, types of P2P, dosage, target outcomes, and social validity. About half of studies focused on providing support groups for parents, and the other half focused on individual matching and mentoring for skill acquisition of parents. Across the included 25 studies, a total of 141 parents participated as parent mentors and 747 parents as parent mentees. We also present implications for future research.

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Background. Parents with a fetus diagnosed with a complex congenital heart defect (CHD) are at high risk of negative psychological outcomes. Purpose. To explore whether parents' psychological and decision-making outcomes differed based on their treatment decision and fetus/neonate survival status. Methods. We prospectively enrolled parents with a fetus diagnosed with a complex, life-threatening CHD from September 2018 to December 2020. We tested whether parents' psychological and decision-making outcomes 3 months posttreatment differed by treatment choice and survival status. Results. Our sample included 23 parents (average Age[years]: 27 ± 4, range = 21-37). Most were women (n = 18), non-Hispanic White (n = 20), and married (n = 21). Most parents chose surgery (n = 16), with 11 children surviving to the time of the survey; remaining parents (n = 7) chose comfort-directed care. Parents who chose comfort-directed care reported higher distress (x¯ = 1.51, s = 0.75 v. x¯ = 0.74, s = 0.55; Mdifference = 0.77, 95% confidence interval [CI], 0.05-1.48) and perinatal grief (x¯ = 91.86, s = 22.96 v. x¯ = 63.38, s = 20.15; Mdifference = 27.18, 95% CI, 6.20-48.16) than parents who chose surgery, regardless of survival status. Parents who chose comfort-directed care reported higher depression (x¯ = 1.64, s = 0.95 v. x¯ = 0.65, s = 0.49; Mdifference = 0.99, 95% CI, 0.10-1.88) than parents whose child survived following surgery. Parents choosing comfort-directed care reported higher regret (x¯ = 26.43, s = 8.02 v. x¯ = 5.00, s = 7.07; Mdifference = 21.43, 95% CI, 11.59-31.27) and decisional conflict (x¯ = 20.98, s = 10.00 v. x¯ = 3.44, s = 4.74; Mdifference = 17.54, 95% CI; 7.75-27.34) than parents whose child had not survived following surgery. Parents whose child survived following surgery reported lower grief (Mdifference = -19.71; 95% CI, -39.41 to -0.01) than parents whose child had not. Conclusions. The results highlight the potential for interventions and care tailored to parents' treatment decisions and outcomes to support parental coping and well-being. Highlights: Question: Do the psychological and decision-making outcomes of parents differ based on their treatment decision and survival outcome following prenatal diagnosis with complex CHD?Findings: In this exploratory study, parents who decided to pursue comfort-directed care after a prenatal diagnosis reported higher levels of psychological distress and grief as well as higher decisional conflict and regret than parents who decided to pursue surgery.Meaning: The findings from this exploratory study highlight potential differences in parents' psychological and decision-making outcomes following a diagnosis of complex CHD for their fetus, which appear to relate to the treatment approach and the treatment outcome and may require tailoring of psychological and decision support.

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PURPOSE: Gender diverse youth (GDY) have improved mental health when affirmed by parents, but little is known about the support parents of GDY seek, receive, and still need. This qualitative study explored experiences of parents of GDY to better understand their support needs. METHODS: Parents of GDY submitted videos and were interviewed about their journey supporting their GDY. Data collection continued until thematic saturation was reached. Audio recordings from videos and interviews were transcribed and analyzed via an inductive thematic analysis using the rigorous and accelerated data reduction technique. RESULTS: In total, 25 parents of GDY (mean age 15 years, range 6-21 years) from 12 states provided video recordings and interviews; 36% were People of Color and 28% were fathers. We identified four themes and 12 subthemes. Theme 1: support through education included acknowledging ignorance about gender diversity and remedying ignorance. Theme 2: engaging community noted that support was multilayered and based around the family unit and pre-existing community. Theme 3: expanding community included acknowledgement that seeking new community was important for many to reduce feelings of isolation. It also highlighted that "safe spaces" for parents of GDY were not always safe for those of other marginalized groups, particularly People of Color. Theme 4: support in healthcare spaces centered experiences navigating medical and mental healthcare for GDY and feeling supported and unsupported in those spaces. DISCUSSION: Parents identified numerous ways they sought, received, and needed support to understand and affirm their GDY. These findings will aid development of targeted support interventions for parents of GDY. Further research is needed to evaluate the impact of these interventions on GDY health.

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Parent-Child Interaction Therapy (PCIT) is an intensive parent support program for caregivers and their children who exhibit difficult-to-manage disruptive behaviors. After more than four decades of research supporting its efficacy for reducing children's disruptive behaviors and improving parent-child relationships, PCIT has become one of the most popular and widely disseminated parenting support programs in the world. The evidence for the efficacy of PCIT can be found in many reviews of randomized clinical trials and other rigorous studies. To add to those reviews, our aim was to provide practical guidance on how PCIT can be part of an evidence-based program for families that depends on practitioner expertise, as well as attention to families' diverse needs. To do this, we describe the evolution of PCIT as practiced in a university-community partnership that has continued for over 20 years, alongside a narrative description of selected and recent findings on PCIT and its use in specific client presentations across four themes. These themes include studies of 1) whether the standard manualized form of PCIT is efficacious across a selection of diverse family situations and child diagnoses, 2) the mechanisms of change that explain why some parents and some children might benefit more or less from PCIT, 3) whether treatment content modifications make PCIT more feasible to implement or acceptable to some families, at the same time as achieving the same or better outcomes, and 4) whether PCIT with structural modifications to the delivery, such as online or intensive delivery, yields similar outcomes as standard PCIT. Finally, we discuss how these directions in research have influenced research and practice, and end with a summary of how the growing attention on parent and child emotion regulation and parents' responses to (and coaching of) their children's emotions has become important to PCIT theory and our practice.