Family-centered Practice Research Articles

Barriers and Facilitators to Delivering Inpatient Cardiac Rehabilitation: A Scoping Review.

The purpose of this scoping review was to summarize the literature on barriers and facilitators that influence the provision and uptake of inpatient cardiac rehabilitation (ICR). A literature search was conducted using PsycINFO, MEDLINE, EMBASE, CINAHL and AgeLine. Studies were included if they were published in English after the year 2000 and focused on adults who were receiving some form of ICR (eg, exercise counselling and training, education for heart-healthy living). For studies meeting inclusion criteria, descriptive data on authors, year, study design, and intervention type were extracted. The literature search resulted in a total of 44,331 publications, of which 229 studies met inclusion criteria. ICR programs vary drastically and often focus on promoting physical exercises and patient education. Barriers and facilitators were categorized through patient, provider and system level factors. Individual characteristics and provider knowledge and efficacy were categorized as both barriers and facilitators to ICR delivery and uptake. Team functioning, lack of resources, program coordination, and inconsistencies in evaluation acted as key barriers to ICR delivery and uptake. Key facilitators that influence ICR implementation and engagement include accreditation and professional associations and patient and family-centred practices. ICR programs can be highly effective at improving health outcomes for those living with CVDs. Our review identified several patient, provider, and system-level considerations that act as barriers and facilitators to ICR delivery and uptake. Future research should explore how to encourage health promotion knowledge amongst ICR staff and patients.

Experiences of Family Collaboration in Early Intervention among Korean and Chinese Caregivers

Despite the importance of family-centered practice in the Individuals with Disabilities Education Act Part C, a federally funded program for birth to two-year-old children with disabilities, there is a lack of research on Asian families who participate in early intervention in the U.S. This study examined the experiences of two Korean families and one Chinese family in early intervention in the U.S. Interviews were conducted and analyzed by bilingual researchers using ecological systems theory. As a multiple-case design study, the caregiver roles, beliefs, practices, and experiences related to their participation in early intervention were reported through within-case and cross-case analysis.

Adapting an intervention to support young caregivers of cancer survivors: A study protocol.

Of the family members providing care, in the United States over 5.4 million are young people (<18 years of age) and they are the caregivers receiving the least support overall. Given the need to support cancer survivors through a family-centered practice approach, this lack of support and intervention for young caregivers represents a substantial gap in cancer care. In this study, we will adapt a young caregivers intervention, YCare, with young caregivers in families affected by cancer in order to advance support for families in cancer settings. YCare is an intervention that improves the support young caregivers provide through a peer-engaged, multidisciplinary model but has previously not been studied in the cancer care setting. Guided by the updated Consolidated Framework for Implementation Research (CFIR) we will engage stakeholders (i.e., young caregivers, cancer survivors, health care providers) using qualitative (i.e., one-on-one semi-structured interviews) and arts-based methods. Stakeholders will be recruited via cancer registries and community partners. Data will be analyzed descriptively using deductive (e.g., CFIR domains) and inductive (e.g., cancer practice settings) approaches. The results will indicate the critical components for adapting the YCare intervention to the cancer practice context including new intervention elements and key characteristics. Adapting YCare to a cancer context will address a critical cancer disparity issue.

A Comparison of Child-Reported and Parent-Reported Interoceptive Awareness in Typically Developing School-Aged Children

ABSTRACT Interoceptive awareness refers to the way in which we perceive and interpret our body signals. It has links to sensory processing and how we understand and respond to emotion. Current research lacks evidence as to whether gender influences interoceptive awareness in children. In occupational therapy practice, clinicians use a family-centered approach to understand both child and parent perspectives to support participation, yet there is a gap in the literature that speaks to any differences in child- and parent-reports of child interoceptive awareness. This exploratory study investigated comparisons of gender and child- and parent-reported child interoceptive awareness. Twenty-seven pairs of typically developing school-aged Australian children, and one of their parents participated in the study by completing the Multidimensional Assessment of Interoceptive Awareness – Youth (MAIA-y). Independent-samples t-tests revealed no statistically significant differences in child interoceptive awareness between boys and girls. Comparing child-report (M = 3.837, SD = 0.509) and parent-report (M = 3.326, SD = 0.785) of child interoceptive awareness elicited one statistically significant difference on the MAIA-y Emotional Awareness subscale (t(52) = −2.840, p = 0.006). This exploratory study provides preliminary evidence relating to gender differences regarding interoceptive awareness in children and for using both a child- and family-centered practice approach in pediatric occupational therapy practice.

Family-Centered Practices and Caregiver Mental Health in a Developmental Intervention for Young Children With Congenital Zika Syndrome

The goal of this study was to describe the provision of intervention services to children with congenital Zika syndrome (CZS) in a large health care institution located in Recife, Brazil, and family factors related to intervention involvement, through the lens of family-centered developmental–behavioral pediatric care principles. Caregivers (N = 50) of children with CZS who were receiving services at a public rehabilitation hospital participated a cross-sectional survey study. Among caregivers, 22% reported a low number of both child and caregiver intervention contacts, 26% reported a high number of child contacts but low caregiver contacts, and 52% reported both high child and caregiver contacts with intervention staff in the past 3 months. Caregiver stress scores were higher and coping strategies were lower in the low child and caregiver intervention contact group. Most caregivers reported high levels of family-centered practices. In regression models, low family resources was associated with higher depression and stress and low coping strategy use, whereas higher support was associated with higher coping. This study adds to the small literature exploring intervention services provided to children with CZS with a particular emphasis on family-centered care principles. It is recommended that intervention programs in Brazil evaluate the availability and accessibility of family resources and develop strategies to help connect families to resources that promote caregiver mental health and child outcomes.

How early interventionists support families experiencing vulnerable circumstances: A closer look at family-centered practice

Guidance from national professional organizations (e.g., the Division for Early Childhood) and professional standards characterize specific practices for the provision of birth through age 2 early intervention services for all families. However, research focused on the family-centered practices (FCPs) that providers use to support families experiencing vulnerability is limited. Therefore, this phenomenological study focused on how early interventionists across disciplines (EIs) described the implementation of services in a rural northeastern state. We conducted nine statewide focus groups with EIs (N = 67) to understand (a) how EIs defined the vulnerable circumstances of the families they serve, and (b) what FCPs EIs report using with families in these identified vulnerable circumstances. Thematic qualitative analysis was used. Results suggest that much of their services align with the key elements of FCP. Providers’ use of individualizing services more than any other family centered element is discussed as this may influence aspects of coaching and service delivery.

Using eCoaching to Support Mothers' Pretend Play Interactions at Home.

A unique component of early childhood involves understanding how caregivers and educators promote children's developmental outcomes, with play opportunities being a key avenue for enhancing these skills. Targeted coaching is one type of support that can tap into active family engagement during playful learning. This collective case study examined how remote-based eCoaching could support family-centered practices related to the facilitation of pretend play in caregivers of preschool children in the home setting. Four mother-child dyads of preschool children, with and without a disability, participated in eCoaching focusing on pretend play behaviors. During the implementation of eCoaching, three primary findings emerged related to knowledge acquisition, mothers' facilitation of play with their children, and changes in children's pretend play behaviors. In general, both mothers and children benefited from the eCoaching experience. In addition, mothers' perceptions of eCoaching as a means of family-based support were positive, and all deemed eCoaching easy to engage in and beneficial.

A Multiple-Path Model of Workforce Development for Improving the Fidelity of Family Team Conference in the Child Welfare System

ABSTRACT Family Team Conference (FTC) has been suggested as a promising practice model to improve child welfare outcomes. However, there is little understanding of developing an effective workforce to ensure FTC fidelity. Using data involving 891 caseworkers who implemented FTC in a Midwestern state, path analysis showed that both effective training and supervision that parallels the same principles of FTC are necessary conditions to enhance FTC fidelity either directly or indirectly by increasing caseworkers’ facilitation skills. This paper suggests that organizational readiness and ongoing support are essential for ensuring the high-quality implementation of family-centered practice in the public child welfare system.

What We Learn From Listening to Families in Early Childhood Tele-Intervention During the Pandemic

Purpose: Plena Inclusión is the National Federation of Organisations of People with Disabilities in Spain providing services, defending rights, and being an agent of social change. Families who have children with early childhood intervention (ECI) support needs have experienced a changing situation during confinement due to the pandemic. Some of these changes have critically affected some families, whereas others have been able to rely on professional support that has allowed them to develop strengths and improve their functioning as a family. This objective is, precisely, one of the keys to the Family-Centered Practice (FCP) model in ECI. This study aims to explore the narratives of families who have received support in ECI practices during the lockdown in the region of Castilla–La Mancha (Spain) within the frame of Plena Inclusión services. These practices have been directed, in many cases, toward tele-intervention. Method: Data have been collected through ethnographic interviews with families and have been processed through thematic analysis. Results: The results show the perception of families articulated in two thematic network focuses: the personal and family emotions regarding the past and present moment (fear, loneliness, despair, nervousness, uncertainty, anguish, and frustration) and the emotions experienced also in the present but projected toward future (feeling of competence, hope, adaptation, tranquility as they felt supported by professionals, relief for not being alone, trust in their process, or empowerment, among others). Conclusions: In parallel, focus groups with professionals who support these families were carried out, although the results of this analysis will be presented in future reports. The study opens new lines, which evidence the difficulty of the process of transformation toward actual FCPs.

Communicating With Intention: Therapist and Parent Perspectives on Family-Centered Care in Early Intervention.

Responsive communication is critical to ensuring family-centered care in early intervention (EI). The Intentional Relationship Model (IRM) offers a framework for examining therapist-parent communication and offers strategies for supporting therapist responsiveness. To explore family-centered care and therapists' communication in EI using the IRM. Prospective descriptive study. Illinois EI program. Convenience sample of 101 therapists and 19 parents enrolled in an EI program. Therapist disciplines included developmental (n = 24), occupational (n = 32), physical (n = 17), and speech (n = 28) therapy. Demographic questionnaire, Early Interventionist Self-Efficacy Scale, Early Intervention Parenting Self-Efficacy Scale, Measure of Processes of Care (MPOC)-Short Form, MPOC-Service Provider, Clinical Assessment of Modes (CAM), and Clinical Assessment of Suboptimal Interaction-Short Form (CASI-SF). Therapists used family-centered practices specific to relationship building more frequently than information sharing (especially sharing of general information). Therapists used the empathizing, encouraging, and instructing modes most frequently in their interactions with families. Participants' scores on the MPOC, CAM, and CASI-SF were significantly correlated. Therapist-parent interactions were aligned with family-centered care. Opportunities for practitioners were identified in (1) sharing specific and general information and (2) expanding the use of collaborating, problem-solving, and advocating modes. What This Article Adds: In this study, we explored how the IRM can inform family-centered practices in EI through examination of therapists' interpersonal competency and therapeutic mode use.

Comparison of Participants' Behaviors During Telepractice and In-Person Family-Centered Early Intervention

Family-centered early intervention (FCEI) is characterized by the collaborative relationships that exist within triads of practitioners, caregivers, and young children whereby practitioners use capacity-building practices to foster caregivers' involvement in supporting their children's early development. Traditionally, FCEI has been provided in-person with practitioners and families physically present in the same location but, for children who are deaf or hard of hearing, access to in-person early intervention is often limited by external factors. To address these challenges, practitioners are using telepractice more frequently to connect with families through synchronous, 2-way videoconferencing. This exploratory study examined whether participants' behaviors differed when FCEI was delivered in-person and through telepractice. The Triadic Intervention and Evaluation Rating Scale (TIERS) was used to compare 2 groups of triads (16 in-person and 12 telepractice) in terms of practitioner behaviors, caregiver behaviors, and the reciprocal influences of those behaviors. Results indicated that practitioners in telepractice used most family-centered practices more frequently than practitioners in-person. Correspondingly, caregivers in telepractice had more opportunities to participate in early intervention and more frequently demonstrated a variety of participation behaviors than caregivers in-person. Although further research is required to confirm these exploratory findings, these results suggest that FCEI provided through telepractice may enhance practitioners' use of family-centered practices, which, in turn, supports greater participation by caregivers.

Relationship between parental mental health and developmental disorders in early childhood.

Social intervention with children with disabilities and their families should be understood through the principles of family-centred practice. In Spain, early intervention is understood as interventions aimed at children from 0 to 6 years old and their families. Professionals carry out the reception, assessment and intervention. This study aims to analyse the relationship between mental and physical health, caregivers' levels of anxiety and depression and the child's development during the fostering and assessment phase. The sample is made up of 135 families using child development centres in the Balearic Islands. Four questionnaires were completed: Health-Related Quality of Life SF-12, Anxiety and Depression Scale, Child Behaviour Checklist (CBCL 1½-5) and socio-demographic questionnaire. The results show that parents of children with disabilities have higher levels of mental health impairment than physical health impairment. They also score higher on anxiety than on depression. It is worth noting that professional discipline is a variable to be taken into account in relation to parents' perception of their child's developmental improvement. In addition, the association between the developmental subscales, where the more the child is affected, the more the parents' mental health is affected. The same pattern occurs with caregivers' levels of anxiety and depression. In short, we propose a reflection on the application of family-centred practices during interventions, understanding the lack of professional training as a predictor of the quality of early intervention.

Involving Caregivers of Autistic Toddlers in Early Intervention: Common Practice or Exception to the Norm?

Family-centered practice (FCP) is a core component of early intervention (EI) associated with improved child and family outcomes, but little is known about community-based speech-language pathologists' (SLPs') inclusion of families in EI. Many caregivers of autistic children experience caregiving-related stress, making these intervention principles especially critical to the provision of optimal services. This study aimed to characterize EI SLPs' use of FCP coaching strategies and the quality of caregiver-SLP relationships. Participants included 25 families with an autistic toddler and their EI SLP. One intervention session for each SLP-family dyad was recorded and coded for the SLP's use of FCP coaching strategies. Caregivers and SLPs completed surveys about their working alliance, caregiver perceptions of family-centered care, and SLPs' approach to FCP. SLPs primarily use child-directed strategies without caregiver involvement. When involving caregivers, SLPs infrequently use coaching strategies that are important for caregiver learning and collaboration (e.g., joint planning and guided practice with feedback). However, caregivers perceived their child's services to be highly family-centered, and caregivers and SLPs rated their working alliance to be of high quality. The presence of strong caregiver-SLP working alliances alongside infrequent usage of effective coaching strategies indicates that SLPs may engage caregivers in ways that are perceived to be highly collaborative but are not optimal for caregiver involvement in all aspects of their child's services (goal setting and implementation of intervention). Consideration of family preferences and SLP beliefs about FCP will inform ways to disseminate FCPs needed to optimize families' capacities to support their child's development. https://doi.org/10.23641/asha.20113550.

A qualitative systematic review of the role of families in supporting communication in people with dementia.

Cognitive-communication difficulties are often associated with dementia and can impact a person's ability to participate in meaningful conversations. This can create challenges to families, reflecting the reality that people living with dementia rarely have just one regular conversation partner, but interact with multiple family members. To date, there is limited evidence of the impact of changes in communication patterns in families. A family systems approach, with foundations in psychology, can be used to explore the impact of communication difficulties on multiple different family members, including the person living with dementia and potential coping strategies used by individuals, together with the family as a whole. A systematic review of primary qualitative research was conducted to identify and examine research exploring communication and interaction within families living with dementia. Studies were identified through a comprehensive search of major databases and the full-text articles were subject to a quality appraisal. We conducted a thematic analysis on the literature identified to consider the role of families in supporting communication for people with dementia. The searches identified 814 possible articles for screening against the eligibility criteria. Nine articles were included in the final review. Three major themes emerged from the analysis of the included studies: (1) 'identities changing' reflected how interactions within the family systems impacted on identities; (2) 'loss' reflected the grief experienced by families due to changes in communication; and (3) 'developing communication strategies' highlighted strategies and approaches that families affected by dementia may use organically to engage in meaningful interactions and maintain connection. Only one study explicitly used a family systems approach to understand how families manage the changes in interaction resulting from dementia. The findings may usefully inform the clinical practice of speech and language therapists in terms of communication strategies and coping mechanisms that may be advised to facilitate connection in families living with dementia. Further research using a family systems approach to exploring communication in dementia may help to support the implementation of family-centred practice as recommended in policy. What is already known on the subject There is increasing recognition of the impact of dementia on whole families and the need for family-centred interventions to enhance quality of life. However, much of the research to date that explores communication within families affected by dementia examines interaction between dyads, largely overlooking the roles and skills of other familial communication partners. To the authors' knowledge, there has been no previous review of the literature using a family systems approach, which has the potential to inform clinical practice of those working in dementia care. What this paper adds to existing knowledge The review examines and understands what is known about the approaches used by families affected by communication changes resulting from dementia to preserve connection. It collates the evidence from qualitative studies examining approaches and strategies used by individual conversation partners, including people with dementia, as well as the family system as a whole, to facilitate meaningful interactions, and proposes recommendations for clinicians working in this field. Furthermore, we consider the potential benefits of using a family systems approach to understand the context of people living with dementia and how this could enhance communication, personhood and well-being. What are the potential or actual clinical implications of this work? This review highlights practical conversation strategies and interactional approaches that may serve to enhance communication and preserve relationships between people with dementia and their family members. Such techniques have the potential to be advised by Speech and Language Therapists working in dementia care as part of tailored, relationship-centred care and support that they provide.

The impact of parent involvement on improving participation of children born preterm: The story in the baseline

BackgroundPreterm birth continues to be a major public health challenge that has long term consequences on participation into adulthood. However, little is known about effective interventions to improve the participation of children born preterm. MethodsThis study gathered initial evidence on the usefulness of a goal-focused, environmental-based approach (Pathways and Resources for Engagement and Participation (PREP)) in improving the participation of children born preterm, and living in Ireland. Three school-age boys (6–7 years old) with a history of preterm birth participated in the 12-week PREP intervention. A 36-week single-subject AB design was employed and replicated across 3 different participation goals within each child and across 3 children. Activity performance was measured repeatedly, through parental involvement, using the Canadian Occupational Performance Measure (COPM), providing 9 individual outcome trajectories. Visual inspection and mixed-effects segmented regression were used. ResultsGoals were selected from various participation domains and settings. Throughout the baseline phase, once goals were set, significant improvements in activity performance were observed for all participants (t = 14.06, p < 0.001). Further clinically significant improvements (2.58 on the COPM) for all 9 participation goals were seen in overall performance during the intervention phase. These changes remained at follow-up. ConclusionsFindings support family-centered practice and draw attention to the power of goal setting in improving participation within this context. Challenges with single-subject design with this population were also highlighted. Results demonstrate the potential impact of parent involvement when using an environmental-based approach to improve the participation of this underserved population.

Patient participation in interprofessional learning and collaboration with undergraduate health professional students in clinical placements: A scoping review

Undergraduate students obtaining interprofessional education (IPE) in clinical placements are expected to develop patient- and family-centered competencies; however, the patients' role in IPE requires attention. We explored how patient participation was articulated in the IPE research and literature from 2010 to 2020. 73 articles were eligible for inclusion and were subjected to a two-folded analysis. Characteristics included publication year, country of origin, study design, and varied contexts. Studies were conducted in hospitals, primary care, or a variety of settings (one-third each) and 25 different education programs were represented; however, students from medicine, nursing, physiotherapy, and occupational therapy were on the healthcare teams most often. In 42% (n = 32) of the studies, patient participation was not articulated. Most studies articulating patient participation showed partial participation; for example, how interprofessional students recognized and informed patients. Few studies described extensive patient participation; however, some noted patients' active participation in care planning and treatment and the student–patient relationship. This review provides novel insight into how patients' participation in interprofessional clinical learning is articulated. We believe that acknowledging patients’ role in IPE is necessary to improve the provision of healthcare services and to promote IPE as a patient- and family-centered practice. Our results may contribute as an input into the academic discourse in IPE and have implications for future publications within the research field.

Parents’ and healthcare professionals’ experiences and perceptions of parental readiness for resuscitation in Iranian paediatric hospitals: a qualitative study

ObjectiveThe aim of this study was to examine parents’ and healthcare professionals’ experiences and perceptions of parental readiness for resuscitation of their child in a paediatric hospital.DesignThis exploratory descriptive qualitative...

Empowerment, anxiety and depression in families using early childhood intervention services

ABSTRACT Families of children with disabilities may experience mental health problems, feelings of emotional isolation or parental role incompetence. Early intervention (ECI) acts through Family-Centred Practices (FCP) to support child development and, at the same time, strengthen family capacities and inclusion. The aim of the study is to analyse the level of empowerment and the level of anxiety and depression of family members during the reception and assessment phase in ECI services in the Balearic Islands (Spain). The design is non-experimental cross-sectional with a mixed methodology. In the quantitative phase, information was collected from 135 relatives (78.5% women, 21.5% men) using three questionnaires. In the qualitative phase, information was collected through five focus groups with 30 participants (56.7% women, 43.3% men). The main results show that family members report higher levels of family empowerment compared to the service system or to community-policy empowerment. The findings showed greater levels of anxiety than depression, feelings of despair, uncertainty or exhaustion where also detected. Professional support contributes to improved socio-emotional well-being. Professionals are encouraged to identify the level of family empowerment and initial emotional well-being to enhance the quality of the intervention.

Families’ and professionals’ perspectives of building and maintaining engagement in telepractice early intervention for young children with communication disability

Purpose To explore and describe families’ and professionals’ perspectives about building and maintaining engagement in telepractice early intervention (EI). Methods Individual semi-structured reflexive interviews were conducted with Australian families of young children with communication disability receiving telepractice EI and their treating professionals. These interviews were conducted within one day of a telepractice EI session and analysed using thematic analysis. Results Thematic analysis of 72 interviews resulted in five themes that emphasised collaboration as an overarching enabler of engagement. The themes were: (1) the delivery of family-centred telepractice was essential for engaging children and families; (2) engagement in telepractice was variable and was affected by child, parent and professional factors; (3) engagement was an investment that required time, consistency and technology; (4) maximising communication interactions during telepractice sessions encouraged children and families to engage with professionals; and (5) joint planning and preparation facilitated child and family engagement in telepractice. Conclusions In the midst of the current COVID-19 pandemic, the present study shed light that in many ways, engagement in in-person and telepractice intervention is similar. However, the findings revealed the importance of families having an active role in telepractice EI sessions that occur in the family’s social and communication environment. Implications for Rehabilitation Family engagement and high levels of parent participation are recommended in family-centred early intervention (EI). In EI delivered via telepractice, families and professionals invest in engagement-building and collaboration in a similar manner to in-person EI and in line with the principles of family-centred practice. The distinctiveness of telepractice engagement includes professionals being conscious of their communication style, taking advantage of the home environment, communicating inside and outside appointments, and jointly planning with parents/primary carers. EI professionals and students who work with young children with communication disability via telepractice can benefit by considering the engagement-building strategies described in the present study.

Multidimensional Family-Centred Early Intervention in Children with Hearing Loss: A Conceptual Model.

At least two per thousand newborns are affected by hearing loss, with up to 40% with an additional disability. Early identification by universal newborn hearing screening and early intervention services are available in many countries around the world, with limited data on their effectiveness and a lack of knowledge about specific intervention-related determinants of child and family outcomes. This concept paper aimed to better understand the mechanisms by which multi-dimensional family-centred early intervention influences child outcomes, through parent behaviour, targeted by intervention by a review of the literature, primarily in the field of childhood hearing loss, supplemented by research findings on physiological and atypical child development. We present a conceptual model of influences of multi-disciplinary family-centred early intervention on family coping/functioning and parent–child interaction, with effects on child psycho-social and cognitive outcomes. Social communication and language skills are postulated as mediators between parent–child interaction and non-verbal child outcomes. Multi-disciplinary networks of professionals trained in family-centred practice and the evaluation of existing services, with respect to best practice guidelines for family-centred early intervention, are recommended. There is a need for longitudinal epidemiological studies, including specific intervention measures, family behaviours and multidimensional child outcomes.