How do parents frame their engagement experience in early intervention? A grounded theory study.

PURPOSE: Parent and therapist engagement and partnership are critical in early intervention physiotherapy and occupational therapy for infants with cerebral palsy to improve outcomes. The main aim of this study was to understand how parents perceive their engagement experience in early intervention over time. METHODS: Grounded theory methodology was used. Twenty parents of diverse backgrounds participated in 22 interviews (including some repeated longitudinally) to reflect on their engagement experience within the context of early intervention community services provided in the UK NHS. RESULTS: The findings highlight how parents' perspectives of their engagement in EI change according to critical circumstances, including their preceding neonatal trauma, the at-risk CP label, firmer diagnosis of CP and their child's response to intervention. We theorise that this disrupted transition experience to parenthood becomes part of parental framing (or sense-making) of their engagement in EI. Overlapping frames of uncertainty, pursuit and transformation capture and explain nuances in parents' engagement patterns within EI over time. CONCLUSION: This theorising has implications for early intervention therapists in how they engage in the lives of families and partner with parents to support healthier parental transition, wellbeing and subsequent improved infant outcomes.

New insights are provided into how recent advances to prognostic practices for infants with cerebral palsy affect parental perspectives and their engagement experience in early interventionThe paper's organising concepts support a clearer understanding for early intervention practitioners of this complex parent experienceEarly intervention practitioners are encouraged to reflect upon their practice as they engage in families' lives and partner with parents during this challenging period to optimise outcomes.

Understanding Parents' Experiences With Mainstream Schooling for Their Children With Autism Spectrum Disorder: A Meta-Analysis.

IMPORTANCE: Children with autism spectrum disorder (ASD) face school-related occupational challenges. Attending a mainstream school offers benefits for children's learning and their development of social skills; however, parents express frustration with ensuring their child's unique needs and preferences are met. OBJECTIVE: To gain insight into parents' experiences with the mainstream preschool and primary educational system for their children with ASD. DATA SOURCES: Eleven electronic databases were systematically searched, and processes were followed according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. STUDY SELECTION AND DATA COLLECTION: Study eligibility was determined through the use of selection criteria and paired independent reviewers. Critical appraisal was conducted using a qualitative research hierarchy and a modified version of the Critical Appraisal Skills Programme tool. Two reviewers synthesized the data into themes, following the Joanna Briggs Institute meta-aggregation process. Twenty-six qualitative studies, representing the voices of 397 parents, are presented in this review (spanning 2013-2021). Articles were set in Westernized and non-Westernized settings and represented culturally and linguistically diverse population groups. FINDINGS: Parents of children with ASD reported a lack of awareness and understanding of their children's unique learning needs in the mainstream school system at all levels. CONCLUSIONS AND RELEVANCE: This review has various occupational therapy practice implications for supporting school-age children with ASD, their parents, and school staff. These include adopting family-centered and ecological approaches, raising awareness, influencing policy, and facilitating collaboration. What This Article Adds: This review provides guidance for occupational therapists working in schools about their practice in working at the individual, targeted, and whole-school levels to address occupational barriers faced by children with ASD.

Implementing infant and family-centred developmental care: Exploring the impact of an innovative educational initiative.

AIM: Evidence-based standards for infant and family-centred developmental care are shaping neonatal care. However, the translation of theory and evidence into practice is challenging. This study aimed at exploring the mechanisms by which a structured learning and mentoring model influences the implementation of infant and family-centred developmental care within neonatal practitioners' own clinical practice. METHODS: The study used a descriptive qualitative design. Five neonatal practitioners participated in semistructured interviews. Interviews were audio-recorded and transcribed for thematic analysis. RESULTS: The qualitative analysis gave rise to four themes and nine subthemes. The four primary themes were motivation and preparedness for FINE 2; learning experiences during FINE 2; post-training reflections and experiences; and anticipating the future. CONCLUSION: Neonatal practitioners reported positive outcomes from their participation in relation to the development of their knowledge and skills, their performance of their clinical role and the influence on their relationships with other neonatal staff. Being adequately prepared for the programme in terms of managing the time demands, enabling peer support, the role of additional reading and ensuring realistic line management support were identified as important mechanisms for successful engagement and are being used to support further enhancements of the FINE 2 programme.

Understanding the Experiences of Living With an Artificial Eye in Children With Retinoblastoma-Perspectives of Children and Their Parents.

Background: Retinoblastoma is a rare form of pediatric eye cancer for which enucleation is a common treatment modality. There is an increasing focus upon the impact of enucleation on children and families. This study aimed to explore the experiences of children and their families following enucleation to consider the barriers that may be encountered when adjusting to living with an artificial eye and identifying the support services and strategies used to address these barriers. Methods: Using a descriptive qualitative approach, interviews were conducted with 12 parents and seven children and thematic analysis was used to identify four themes representing the perspective of parents and children. Results: Parent themes identified were (a) entry into the world of retinoblastoma; (b) the importance of specialist support; (c) a family learning to cope; and (d) navigating school. The perspectives of children were (a) the importance of preparation and play; (b) positive reinforcement and hospital support; (c) support and openness at home; and (d) the importance of good school planning. Two overarching themes related to parent and child adaptation were also identified. Discussion: The study findings reveal that the process of adapting to living with an artificial eye extended to influencing decisions around parenting, learning to advocate for their child, and supporting children through school and peer relationships. For children, the importance of ongoing support and information was vital to enhance understanding, adaptation, and development of independence. Overall, the study suggests that children and families undergoing enucleation need continuing, individualized, and specialist support.

Parental engagement in early intervention for infants with cerebral palsy-A realist synthesis.

BACKGROUND: Emphasis on parental engagement strategies within occupational therapy and physiotherapy early intervention (EI) programmes for infants at high risk of cerebral palsy (CP) has increased. This reflects consensus that increasing parent participation enhances treatment efficacy, potentially improving infant and parent outcomes. However, evaluation of parental engagement in EI is complex. Despite the growing application of parental engagement strategies, aligned with family-centred care practice, theoretical evaluation is currently lacking within the literature. This realist synthesis aimed to identify component theories underlying EI strategies to support parental engagement and to use empirical findings to evaluate how these work in practice. METHODS: Realist synthesis: Databases Medline, Embase, Amed, CINAHL and PsychInfo were searched (from February 1985 - February 2020); further articles were sourced from reference lists. A data extraction form was used, and a Critical Appraisal Skills Programme tool was used to assess study rigour. RESULTS: Twenty-six articles were included. Quality of relationships, parent education and intervention co-design were the key themes related to parental engagement strategies. Findings indicate that constructive parent reasoning mechanisms of trust, belief, sense of control, perceived feasibility of home programme delivery and ultimately motivation are linked to the underlying intervention resources afforded by specific strategies (e.g., coaching pedagogy). These responses are precursors to engagement outcomes that include increased parental self-efficacy and adherence. Importantly, parental self-efficacy can initiate a process of change leading to improved parental confidence and anxiety. CONCLUSIONS: Sensitively designed programme strategies, centred on relational quality between parent, infant and therapist, are fundamental for effective parent connection, involvement and investment within EI for infants with CP.

Cuddling very and extremely preterm babies in the delivery room is a positive and normal experience for mothers after the birth.

AIM: Extremely preterm infants are separated from their mothers immediately after birth and not placed skin-to-skin in routine neonatal intensive care unit settings. Visual and physical contact in the delivery room as a first cuddle potentially can facilitate early parent-infant interaction and reduce the trauma of separation. Our aim in this study was to explore mothers' experience of delivery room cuddle by collecting qualitative feedback via emotional mapping. METHODS: Six mothers experiencing delivery room cuddle had been recruited (GA of their babies 24 + 5-29 + 0 weeks, birth weight 540-1019 g). Using a descriptive qualitative approach, semi-structured interviews were performed with six mothers following consent via Zoom or phone between September 2020 and March 2021. Interviews were transcribed using AI Otter and then analysed using thematic analysis. RESULTS: Analysis of the participants' experiences revealed five themes: fears and hopes around delivery; the moment of delivery-recognising uncertainty; reclaiming normalcy; forming connections; and the journey ahead as an empowered parent. CONCLUSION: All mothers reported positive emotions about the cuddle with their baby. They highlighted that this physical contact was often the only positive and 'normal' birth experience they had from the time of delivery.

A meta-synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children.

In order to present a greater understanding to parental experiences of supporting their child with autism to access healthcare services, a systematic review of qualitative research was undertaken, addressing the review question: 'How do parents of children with autism describe their experiences of utilising routine healthcare services?'. After a systematic search and selection process, 12 studies were identified and appraised independently by paired reviewers using an adapted version of the Critical Appraisal Skills Programme (CASP) tool. Data were synthesised by two reviewers in line with the Joanna Briggs Approach for meta-aggregation. The 12 studies included in this review (spanning 2012-2020), represented the voices of 240 parents. The synthesis resulted in the following synthesised finding (based on four categories that emerged from the original studies' themes): parents report challenges in accessing and use of mainstream health services, for their child with autism, due to not having a voice, inadequate communication and lack of understanding from health service providers. This review raises our awareness of parents' experiences of healthcare services and will assist healthcare practitioners to reconsider their own communication style, understanding and approach with children with autism and their families. From these findings, we recommend that healthcare practitioners more readily incorporate parents' contributory expertise into healthcare visits. These recommendations will help facilitate effective, supportive and positive healthcare experiences for all involved.

Clinician Perceptions of the Impact of a Shock Team Approach in the Management of Cardiogenic Shock: A Qualitative Study.

INTRODUCTION: Designated cross-specialty shock teams have been proposed as a mechanism to manage the complexity of decision-making and facilitate collaborative, patient-centred care-planning in cardiogenic shock. Observational data support the notion that shock protocols and teams may improve survival, but there is an absence of data interrogating how clinicians engage with and value the shock team paradigm. This study sought to explore clinician perceptions of the value of the shock call system on decision making and the management of CGS. MATERIALS & METHODS: A descriptive qualitative approach was used. A focus group, semi-structured interview was conducted with twelve cross-specialty members of a shock team at a single tertiary cardiac centre in the UK. The focus group was audio-recorded, transcribed, and thematically analysed to capture and describe the clinicians' experience and perceptions of shock team discussions. RESULTS: Eight cardiac intensivists, two heart failure cardiologists, one cardiothoracic surgeon and one interventional cardiologist participated in the focus group. Four key themes were identified from the discussions: supportive decision making; team communication; governance and learning; and future directions. CONCLUSION: This study supports the notion that cross-specialty, real-time patient discussion may provide added value beyond protocolised decision making and account for the complexities of managing patients in a field where definitive, high-quality evidence to guide practice is currently limited.

Tool to Enhance Relationships Between Staff and Parents in the Neonatal Unit.

OBJECTIVE: To explore the experiences of neonatal nurses in the implementation of a tool to enhance relationships between staff and parents in the neonatal unit: the You and Your Baby Nursery Guide. DESIGN: Qualitative descriptive design with focus groups. SETTING: The study took place in a Level 4, 20-bed neonatal unit in Melbourne, Victoria, Australia. PARTICIPANTS: Purposive sample of seven registered nurses who worked day or afternoon shifts. METHODS: We conducted two semistructured focus groups after a 4-week implementation period of the You and Your Baby Nursery Guide. Participants completed a weekly reflective journal throughout the implementation period. We audiotaped and transcribed the focus groups and qualitatively analyzed the interview data with the use of thematic analysis. RESULTS: Use of the guide helped transform the relationships between parents and staff. The use of the guide enhanced communication, promoted participants' personal reflection on their clinical skills and style/approach to parent engagement, and directly affected the care participants provided to infants and families. CONCLUSION: The You and Your Baby Nursery Guide was a useful resource to facilitate the delivery of family-centered, developmentally supportive care.

Early intervention programmes for infants at high risk of atypical neurodevelopmental outcome.

The purpose of this review is to present a new framework, EI SMART (early intervention: sensorimotor development, attention and regulation, relationships, and therapist support) for identifying key components that could contribute to more effective interventions for infants at high risk of atypical neurodevelopmental outcome. We present a clinical consensus of current challenges and themes in early intervention, based on multidisciplinary group discussions, including parents of high-risk infants, supported by a literature review. Components to include in early intervention programmes are: (1) promotion of self-initiated, developmentally appropriate motor activity; (2) supporting infant self-regulation and the development of positive parent-infant relationships; and (3) promotion of early communication skills, parent coaching, responsive parenting, and supporting parental mental well-being. Such multimodal programmes may need to be evaluated as a package. WHAT THIS PAPER ADDS: Early intervention programmes should address sensorimotor development, attention, self-regulation, and early communication skills. Therapist input to the programme should include parent coaching and support for parental mental well-being.

PROGRAMAS DE INTERVENCIÓN TEMPRANA PARA LACTANTES CON ALTO RIESGO DE TRATARNOS DEL DESARROLLO NEUROLÓGICO: El propósito de esta revisión es presentar un nuevo marco, EI SMART (intervención temprana: desarrollo sensoriomotor, atención y regulación, relaciones y apoyo del terapeuta) para identificar componentes clave que podrían contribuir a intervenciones más efectivas para los bebés con alto riesgo de desarrollar un trastorno del neurodesarrollo. Presentamos un consenso clínico de los desafíos y temas actuales en la intervención temprana, basados ​​en discusiones grupales multidisciplinares, incluidos los padres de bebés con alto riesgo, respaldados por una revisión de la literatura. Los componentes para incluir en los programas de intervención temprana son (1) la promoción de actividades motoras autoiniciadas y apropiadas para el desarrollo; (2) apoyar la autorregulación infantil y el desarrollo de relaciones positivas entre padres e infantes; (3) promoción de las habilidades de comunicación temprana, entrenamiento de padres, crianza responsable y apoyo al bienestar mental de los padres. Es posible que dichos programas multimodales deban evaluarse como un paquete terapéutico.

PROGRAMAS DE INTERVENÇÃO PRECOCE PARA CRIANÇAS EM ALTO RISCO DE RESULTADO ANORMAL DO DESENVOLVIMENTO: O propósito desta revisão é apresentar um novo formato: EI SMART (intervenção precoce: desenvolvimento sensóriomotor, atenção e regulação, relacionamentos, e apoio do terapeuta) para identificar componentes centrais que podem contribuir para intervenções mais efetivas em lactentes de alto risco. Apresentamos um consenso clínico dos desafios correntes e temas em intervenção precoce, com base em discussões interdisciplinares, incluindo pais de lactentes de alto risco, com apoio de uma revisão de literatura. Os componentes a serem incluídos em programas de intervenção precoce são 1) promoção de atividade motora auto-iniciada apropriada para o desenvolvimento; 2) suporte para a auto-regulação do lactente e desenvolvimento de relações pais-filhos positivas; 3) promoção de habilidades precoces de comunicação, suporte aos pais, parentalidade responsável, e suporte ao bem estar mental dos pais. Tais programas multimodais podem precisar ser avaliados em forma de um pacote.

A meta-synthesis of how parents of children with autism describe their experience of advocating for their children during the process of diagnosis.

The diagnostic process for children with autism can be complex for parents to navigate as they advocate for their child in order to obtain answers to their concerns, and receive the subsequent support they need. Gaining an understanding of parents' experiences during this process, will assist service providers in supporting families adequately. This systematic review was undertaken to consolidate in-depth qualitative data from parents of their experience of advocating for their child with autism, during the process of diagnosis. A qualitative meta-synthesis was conducted, whereby fifteen databases were systematically searched. Twenty-two studies were identified and appraised using an adapted version of the Critical Appraisal Skills Programme tool. Data were synthesised into themes through the steps of review, meta-aggregation, integration, and interpretation. The date range of the included studies spans 1999-2016. The voices of 1,178 parents are presented in this review describing their experiences in two overarching themes: "Pathway to diagnosis-Confusion and not feeling heard"; and "Pursuing diagnosis-Resilience and commitment." Each one of these main themes had sub-themes. Our findings highlight the intense emotional journey for parents during identification of their initial concerns and the formal process of diagnosis, and their perceptions of not being supported by others on this journey. This review illustrates the significant impact that positive experiences with first-line professionals have during the process of diagnosis, and how these experiences lay the foundation for all future relationships with other service providers. As a result, awareness of parents' experiences will assist service providers to reconsider their communication style, information sharing, provision of support and to incorporate parents' contributions in facilitating a more streamlined and more supportive process of diagnosis.

Maternal mental health during the neonatal period: Relationships to the occupation of parenting.

PURPOSE: To (1) examine the extent of a range of early mental health challenges in mothers with a very preterm infant hospitalized in the NICU and mothers of full-term infants, (2) identify family social background and infant medical factors associated with higher levels of maternal psychological distress, and (3) assess the relationship between maternal psychological distress and maternal perceptions of the parenting role, parenting confidence and NICU engagement. METHODS: At hospital discharge 37 mothers of very preterm infants (≤32 weeks gestation) and 47 mothers of full-term infants (≥37 weeks gestation) completed structured assessments of their psychological wellbeing and transition to parenting. Mothers of very preterm infants were also questioned about their NICU visitation and involvement in infant care. RESULTS: Sixty-four percent (n = 54) of mothers experienced psychological distress (n = 26, 70% of preterm; n = 28, 60% of full-term). Lower infant birthweight was associated with maternal psychological distress (p = .03). Mothers of very preterm infants had significantly more psychological distress related to having a Cesarean section delivery (p = .02). Higher levels of psychological distress were associated with lower levels of parenting confidence in mothers of both very preterm and full-term infants (p < .02). CONCLUSION: Although parents of very preterm infants have higher rates of maternal mental health challenges, mothers of full-term infants at high social risk are also impacted.

The acquisition of parenting occupations in neonatal intensive care: A preliminary perspective.

BACKGROUND: The birth of a preterm infant represents a major crisis for parents that may impact their performance of parenting occupations. PURPOSE: The purpose of the study was to explore the experiences that enable parents to participate in occupations associated with the role of parenting in a neonatal intensive care unit (NICU). METHOD: A paradigmatic analysis of narratives was completed based on interviews conducted with six parents of preterm infants. FINDINGS: Six themes were identified: anticipating occupations versus reality, needing emotional resilience, working to reclaim the parental role, navigating the NICU occupation-environment transactions, building and maintaining relationships with staff, and revisioning the future. IMPLICATIONS: The use of an occupation-based approach moves parents' involvement in the NICU beyond basic caregiving occupations. It highlights the importance of providing opportunities for nurturing and caring for their infants in ways that are meaningful to their identity as a parent.