Feasibility of a home-based home videogaming intervention with a family-centered approach for children with cerebral palsy: a randomized multiple baseline single-case experimental design.

BACKGROUND: Worldwide, children with cerebral palsy (CP) living in underserved communities face barriers to accessing motor therapy services. This study assessed the implementation and effectiveness of an 8-week, upper limb (UL) home-based intervention with a movement-tracking videogame (Bootle Blast) in Costa Rican children with CP. METHODS: Children established a weekly playtime goal and two UL activities of daily living (ADLs) that they would like to improve on. A multiple-baseline, single-case experimental design, was used with the Performance Quality Rating Scale (PQRS) as the repeated measure to track changes in performance of the selected ADLs between the baseline (usual care) and intervention (Bootle Blast) phases. The Canadian Occupational Performance Measure (COPM), the Box and Blocks Test (BBT) and the Children's Hand-Use Experience Questionnaire (CHEQ) were collected before and after the intervention. Technical barriers were documented during weekly video calls with a monitoring therapist. Treatment effect size, slope changes and percentage of non-overlapping data were identified for the PQRS. Descriptive statistics summarized results for the BBT, CHEQ, videogame logs (e.g., playtime) and technical barriers. RESULTS: Fifteen children participated and 13 completed the intervention. Both participants who dropped out did so after completing baseline assessments, but before experiencing Bootle Blast. Children's mean active playtime (i.e., mini-games targeting the UL) across the 8-weeks was 377 min, while mean total time spent engaging with Bootle Blast (active + passive play time [e.g., time navigating menus, reviewing rewards]) was 728 min. In total, eight technical issues (from five children) were reported, and all but three were resolved within 48 h. Partial effectiveness was associated with the intervention. Specifically, 85% of participants improved on the PQRS and 69% achieved clinically important improvements ≥ 2 points in performance on the COPM. Children improved by 1.8 blocks on average on the BBT, while on the CHEQ, five children had a clinically important increase of 10% of the total number of UL activities performed with both hands. CONCLUSION: Bootle Blast is a feasible and effective option to facilitate access and engage children with cerebral palsy in UL home rehabilitation. Trial registration Trial registration number: NCT05403567.

Are expectations of labour and birth fulfilled? A qualitative investigation of first-time parents.

AIM: To describe if first-time parents' expectations of labour and birth, explored during the third trimester of pregnancy, were fulfilled or not when investigated 1 year following birth. DESIGN: Qualitative Husserlian phenomenological approach. METHODS: The sample comprises 10 parents (five couples), who participated in an online semi-structured audio-recorded individual interview conducted 1 year after birth, between September 2020 and October 2020. Parents' expectations of labour and birth, described throughout a focus group discussion on pregnancy, were compared with their experience explored 1 year after birth. A thematic analysis was adopted and member checking was used to validate participants' thoughts. RESULTS: Participants gave birth in a II level maternity unit and one-to-one midwifery care was provided. Although during the focus group conducted in pregnancy, women reported being aware of the unpredictable nature of childbirth, they expressed sadness and failure after experiencing some unexpected interventions. The midwife was a reassuring guide, as expected; however, sometimes, the communication was not effective, and women perceived lack of support. Some women partly blame themselves for not being prepared to manage labour pain, which hurt more than expected. Feeling of uncertainty about events were experienced in relation to seeking care at an early stage of labour, which confirmed the fears expressed during pregnancy. During the antenatal focus group discussion, fathers doubted they could be helpful for the labouring women. This negative emotion was confirmed after birth. However, they understood the importance to be present and to support their partner. CONCLUSIONS: One year after birth, participants had consistent memories of their birth experience. Professionals might identify fundamental components of quality maternity care that are meaningful for parents, with the potential to generate a long-term positive health impact on them. Respectful maternity care should be ensured through a family-centred approach, with the aim to promote satisfaction. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: The study highlights the importance of taking parents' expectations into account when providing antenatal care to tailor individualized support that addresses their distinct needs and preferences. Healthcare professionals might consider initiating a post-natal discussion with parents to assess whether their needs and perspectives have been addressed. This perspective may present valuable insights to achieve long-term positive outcomes, provide high-quality maternity care, address issues and make improvements. IMPACT: The study showed that 1 year after birth, parents can accurately recall their birth. They might also give significant insights into fundamental components of care that they value as crucial to shape a positive birthing experience. Professionals should use this information to build solutions, promoting long-term well-being for parents. Respectful interactions and trusting relationships emerged as key elements in parents' experience. A midwifery care focused on parents' needs may contribute to the achievement of positive birth memories. REPORTING METHOD: This study used the Standards for Reporting Qualitative Research checklist. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Collaborative practice with parents in occupational therapy for children: A scoping review.

INTRODUCTION: In childhood intervention, parent-therapist collaboration is central to the family-centred approach. Despite long-standing discussion in occupational therapy literature, the field faces challenges, including inconsistent terminology and difficulties in translating theory into practice. This paper represents the first part of a comprehensive scoping review study aimed at developing foundational concepts for collaborative practices with parents in occupational therapy for children. Therefore, this paper focusses on mapping existing practices, types, and approaches articulated in the literature. METHODS: We searched English-language sources published worldwide from 1998 to 2022 discussing collaborative practices with parents in occupational therapy for children aged 0-10 with any diagnosis, including multidisciplinary practices. Seven databases were searched. Data from peer-reviewed indexed literature, theses and dissertations, and book chapters were extracted and analysed through basic numerical and descriptive analyses before being synthesised into similar categories. The Joanna Briggs Institute Manual and the Preferred Reporting Items for Systematic reviews and Meta-Analysis-extension for Scoping Reviews were used. RESULTS: The scoping review yielded 299 papers. Parent-therapist collaboration was prominent in clinics, family homes, schools, and hospitals, particularly during therapy implementation, goal setting, and planning. Most reported practice types included 'interventions with parent engagement', 'parent-directed interventions', and 'parent education'. 'Family-centred', 'occupational-focussed', and 'client-therapist collaborative' approaches were frequently mentioned. There were inconsistencies in the terms used to describe collaborative practice characteristics. CONCLUSION: Over the past 24 years, the collaborative practice literature has expanded and evolved, with parent-therapist collaboration observed across various occupational therapy settings. Inconsistencies in this collaboration across different therapeutic stages were revealed, which could impact intervention success and sustainability. Further research is needed to explore parent-therapist collaboration mechanisms within and across stages. This scoping review also underscores the need for a common framework to guide practice and research. PLAIN LANGUAGE SUMMARY: This literature review explores how occupational therapists and parents work together in childhood intervention. Collaboration is essential for understanding and meeting children's needs within their family and community settings. However, occupational therapists and parents face challenges in applying family-centred practices and using a common language to bridge theory with practice. To address these challenges, we examined 299 papers published between 1998 and 2022 to understand how collaborative practices with parents have been described in the literature. Our review revealed that therapists and parents collaborate across various settings, such as clinics, schools, homes, and hospitals, mainly during therapy sessions, goal setting, and planning interventions. Collaborative practices take different forms. For instance, therapists often encourage parents to actively engage and take the lead in therapy, requiring therapists to recognise and respect parents' priorities and learning preferences. They often develop strategies together to support the child within family routines. While we found several studies on therapist-parent collaboration, the review outlined inconsistencies in how this practice was described and applied, which could affect its success. Therefore, more research is needed to understand the best ways in which collaboration can occur at each stage of therapy. The need for a core guideline for collaborative practice with parents in occupational therapy was also observed. While therapist-parent collaboration is used in occupational therapy for children, there is a clear need to minimise inconsistencies and gaps found in the literature, as well as to ensure a common language to promote intervention quality and success.

Foundational concepts of collaborative practice with parents in occupational therapy for children.

INTRODUCTION: In occupational therapy for children, collaborative practice with parents is crucial for meaningful family-centred interventions, yet it remains undefined and inconsistently addressed. This study aimed to establish foundational concepts for collaborative practice with parents in occupational therapy for children in progressing the field with a universal description. METHODS: This paper encompasses the second dataset of a larger scoping review and a preliminary validation of findings by an advisory panel. Data were gathered from indexed sources on collaborative practice with parents in occupational therapy for children (ages 0-10) using MedLine, PsychInfo, ERIC, Embase, OTSeeker, Scopus, and ProQuest Central. Data were extracted, charted, and descriptively analysed by paired independent reviewers. The Joanna Briggs Institute Manual and the Preferred Reporting Items for Systematic Reviews and Meta-Analysis-extension for Scoping Reviews were used. A draft definition of collaborative practices, developed based on preliminary review findings and an operational definition, was validated by an advisory panel of 13 experienced Australian occupational therapists, whose input was integrated into a final, comprehensive description of collaborative practice. RESULTS: The scoping review encompassed 299 sources, revealing three major components of collaborative practice: 'collaborative practice aims', 'parent-therapist partnership', and 'strategies for collaboration'. The advisory panel endorsed the draft definition, confirmed its professional relevance, and suggested some modifications. CONCLUSION: The major outcome of this study is an evidence-based and discipline-specific preliminary description of collaborative practice with parents in occupational therapy for children. This description provides a common language and foundational concepts for the future development of a collaborative practice framework to guide practice and research. Future studies can explore specific components, exploring their mechanisms and significance. Further expanded validation is required, incorporating the perspectives of a wider community of occupational therapists and families to enhance the description's applicability.

French neonatal society position paper stresses the importance of an early family-centred approach to discharging preterm infants from hospital.

AIM: The families of hospitalised preterm infants risk depression and post-traumatic stress and the preterm infants risk re-hospitalisation. The French neonatal society's aim was to review the literature on how the transition from hospital to home could limit these risks and to produce a position paper. METHODS: A systematic literature review was performed covering 1 January 2000 to 1 January 2018, and multidisciplinary experts examined the scientific evidence. RESULTS: We identified 939 English and French papers and 169 are quoted in the position paper. Most studies stressed the importance of early, personalised and progressive involvement of the family. Healthcare staff and families should assess discharge preparations jointly. This evaluation should assess the capacities of the newborn infant, with regard to its physiological maturity. It should also assess the family's ability to supply the medical, psychological and social assistance required before and after discharge. There should be a structured follow-up process that includes effective communication, various tools, interventions, networks, health and social professionals. CONCLUSION: Discharge preparations may improve the transition from hospital to home and the outcomes for the parents and newborn preterm infant. This early family-centred approach should be structured, coordinated and based on individual needs and circumstances.

Perceived barriers to healthcare utilization among Jordanian families: A family centered approach.

AIM: This study aimed to understand the barriers to health services utilization by Jordanian families. BACKGROUND: Access to quality healthcare services is a significant issue facing healthcare systems. Healthcare systems must identify and apply measures to overcome barriers that face utilizing health services and thus increase clients' satisfaction. METHODS: A cross-sectional qualitative research design was used in this study. Semi-structured interviews were conducted with twenty-five families to elicit the model of health services barriers. RESULTS: The analysis of the family interviews led to four main themes related to health services barriers: service system, structural/physical barriers, equipment and medication, and staff competency. This study would increase awareness about underserved populations that avoid seeking medical care. CONCLUSION: Public health efforts are required to increase awareness about the importance of contacting the healthcare system as early as possible. However, public health policy may require developing new initiatives that reduce these perceived barriers, such as enhancing communication skills among healthcare workers, increasing supervision and inspection of healthcare quality, and enhancing patient engagement by using phone calls and messages as appointment reminders and careful follow-up.

Protocol for digital intervention for effective health promotion of small children-A cluster randomized trial.

AIM: This article introduces the protocol of a study aiming to evaluate the effectiveness of digital WellWe intervention in supporting the participation of families with small children in the promotion of their health. BACKGROUND: Early childhood is a meaningful period for building a strong base for good health. Parents play a key role in affecting the health behaviour and psychosocial development of their children. A family-centred approach makes it possible to support families' individual health literacy needs and empower them to take actions towards promoting healthier behaviour. However, there are a lack of family-centred digital health interventions intended for parents and their small children. DESIGN: The study is designed as a two-arm cluster, randomized, controlled trial with a 4-month follow-up. METHODS: The data are being collected from 200 families with a 4-year-old child. Cluster randomization is being performed at the municipality level. Municipalities (N = 4) located in Southwest Finland, comprising child health clinics (N = 15) with their family clients, were randomly allocated to either an intervention (WellWe intervention) or a control group (usual care). The outcome measures include parental self-efficacy for healthy behaviours, mindfulness in parenting and the family-centred approach of the extensive health examination. Data collection is being performed at baseline, after the intervention and at a 4-month follow-up. DISCUSSION: The results from this study will make it possible to determine whether this new method can be recommended for implementation in child health clinic settings to support the participation of families with small children in promoting their health.

The Family Caregiving Environment Associates with Adolescent Patients' Severity of Eating Disorder and Interpersonal Problems: A Cross-Sectional Study.

The quality of family interactions may be a critical factor for restrictive eating disorders (REDs). Adolescent patients with RED have interpersonal problems that can be inferred by observing their behaviours during family interactions. To date, the assessment of the association among RED severity, interpersonal problems, and patients' interactive behaviours in the family is partially explored. This cross-sectional study aimed to explore how adolescent patients' interactive behaviours observed during the Lausanne Trilogue Play-clinical version (LTPc) were associated with both RED severity and interpersonal problems. Sixty adolescent patients completed the EDI-3 questionnaire to assess RED severity using the Eating Disorder Risk Composite (EDRC) and Interpersonal Problems Composite (IPC) subscales. Moreover, patients and their parents took part in the LTPc, and patients' interactive behaviours were coded as participation, organization, focal attention, and affective contact in all the LTPc four phases. A significant association emerged between patients' interactive behaviours during the LTPc triadic phase and both EDRC and IPC. Better patients' organization and affective contact significantly correlated with lower RED severity and fewer interpersonal problems. These findings suggest that investigating the quality of family relationships and patients' interactive behaviours may contribute to better identifying adolescent patients at risk for more severe conditions.

Leaner, Healthier, Happier Together--A Family-Centred Approach to Weight Loss with the Overweight Dog and Her Caregivers.

Obesity represents a one of the most significant healthcare issues facing human and companion animal populations worldwide. A complex relationship commonly exists between owners and their companion animal, particularly around feeding behaviour. Obese companion animals commonly live alongside caregivers who are also struggling with their own body weight. This case report highlights the importance of a family-centred approach to canine obesity as a way to engage with the pet's caregivers to help maximize their compliance towards the successful implementation of a tailored weight loss programme. Lara, an overweight dog weighing 35 kilos with a body condition score (BCS) of 7-7.5/9, was referred for a nutritional assessment. A comprehensive, pro-active and multidisciplinary protocol, tailored towards a family-centred approach, was established. After a 16-week programme, Lara reached the target body weight. The caregivers' compliance was assessed as being excellent; they also reassessed their individual lifestyle and were able to increase awareness towards their own nutritional issues and body weight perception, resulting in weight loss in all caregivers. Lara's case report represents how a family-centred approach can lead to successful patient weight loss and to a modification in the caregivers' way of thinking about nutrition and their own lifestyle, with the final goal of living a healthier and longer life together.

Addressing key issues in the consanguinity-related risk of autosomal recessive disorders in consanguineous communities: lessons from a qualitative study of British Pakistanis.

Currently, there is no consensus regarding services required to help families with consanguineous marriages manage their increased genetic reproductive risk. Genetic services for communities with a preference for consanguineous marriage in the UK remain patchy, often poor. Receiving two disparate explanations of the cause of recessive disorders (cousin marriage and recessive inheritance) leads to confusion among families. Further, the realisation that couples in non-consanguineous relationships have affected children leads to mistrust of professional advice. British Pakistani families at-risk for recessive disorders lack an understanding of recessive disorders and their inheritance. Such an understanding is empowering and can be shared within the extended family to enable informed choice. In a three-site qualitative study of British Pakistanis, we explored family and health professional perspectives on recessively inherited conditions. Our findings suggest, firstly, that family networks hold strong potential for cascading genetic information, making the adoption of a family-centred approach an efficient strategy for this community. However, this is dependent on provision of high-quality and timely information from health care providers. Secondly, families' experience was of ill-coordinated and time-starved services, with few having access to specialist provision from Regional Genetics Services; these perspectives were consistent with health professionals' views of services. Thirdly, we confirm previous findings that genetic information is difficult to communicate and comprehend, further complicated by the need to communicate the relationship between cousin marriage and recessive disorders. A communication tool we developed and piloted is described and offered as a useful resource for communicating complex genetic information.