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PURPOSE: To develop the Family Needs Questionnaire-Pediatric Rehabilitation (FNQ-PR) version and evaluate the reliability and concurrent validity of this self-report measure for caregivers of children with disabilities who receive pediatric rehabilitation services. MATERIALS/METHODS: The 39-item FNQ-PR was developed through a modified Delphi Technique. For test-retest evaluation, parents completed the FNQ-PR twice through an online REDCap survey, 1-3 weeks apart. Concurrent validity data (parent-report Impact on Family Scale [IFS-15] and Measure of Processes of Care [MPOC-20]) were collected at baseline. Reliability analyses included ICCs (95%CI) and internal consistency evaluation. RESULTS: Twenty-five caregivers of children ages 2-18 years (mean age 12.2 years) with a disability completed the FNQ-PR at baseline, and 21 completed the retest. FNQ-PR total score demonstrated excellent test-retest reliability (ICC = 0.84); internal consistency was high. The FNQ-PR total score was strongly negatively associated with IFS-15 total score (r = -0.62) and showed fair to strong association with MPOC subscale scores (0.45 ≤ r ≤ 0.70). Participants did not identify issues with the online format or FNQ-PR item rating. CONCLUSIONS: The FNQ-PR demonstrated excellent overall reliability and strong evidence of validity. It fills a gap in clinical care of families of children with disabilities, providing a systematic way for families to identify the extent to which their needs are perceived to have been met. Clinicians can use this tool to target unmet needs that are most important to families. FNQ-PR use in future research will support exploration of the impact of specific child and family factors on family needs.
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Servicios de Salud del Niño , Niño , Humanos , Reproducibilidad de los Resultados , Evaluación de Procesos, Atención de Salud/métodos , Encuestas y Cuestionarios , PadresRESUMEN
PURPOSE: Current service models in childhood rehabilitation promote the active participation of parents/caregivers in their children's therapies. The existing literature provides a limited understanding of the tasks and responsibilities parents undertake in their children's therapies, especially over telepractice. This study describes the tasks undertaken by parents in their children's speech therapy delivered virtually during the COVID-19 pandemic. METHODS: A qualitative descriptive study was conducted with parents and speech-language pathologists, using open-ended interviews. Interviews were analyzed using a combination qualitative content analysis and thematic analysis. RESULTS: Parents performed many tasks to enable telepractice. These tasks happened before (e.g., setting up both physical and virtual space for therapy), during (e.g., managing child's behavior), and after the virtual therapy session (e.g., carrying out home practice). While parents were willing to perform these tasks in order to help their children, some expressed the toll that it can take on them. CONCLUSIONS: Compared to what is known from in-person visits, some of these tasks were novel and unique to telepractice. We recommend that clinicians and parents collaboratively decide on tasks and responsibilities to avoid burdening parents, and that they weigh the costs associated with performing these tasks against the benefits of teletherapy.IMPLICATIONS FOR REHABILITATIONParents perform many tasks to support their children's therapies, both during and outside of therapy sessionsTherapies delivered virtually require parents to assume additional tasks to support their childrenFor services to be Family-Centered, tasks and responsibilities need to be decided collaboratively between parents and clinicians.
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COVID-19 , Trastornos de la Comunicación , Niño , Humanos , Pandemias , Padres , Investigación CualitativaRESUMEN
PURPOSE: Family-centred service (FCS) is an established approach for delivering services in children's rehabilitation and healthcare. This article describes that parents continue to report mixed experiences with healthcare services for their children, as well as their ideas about what they need and want from these services. These findings will inform the development of an up-to-date measure of Family-Centred Service called Measure of Processes of Care (MPOC 2.0). METHODS: A qualitative descriptive study was conducted with parents, using focus groups and open-ended interviews. Data were analyzed using inductive content analysis. RESULTS: Parents want care that is individualized, co-ordinated, easily accessible, and takes into account the entire family dynamic. They want service providers (SPs) to be informed and invested in their child's care, and to provide parents with practical assistance. They also want to be treated with respect, caring and empathy, and to work together with SPs on the care plan. Novel components of care not identified in the original FCS guiding principles include: responsiveness to needs and mental health; effective communication (vs information giving); practical support (in addition to emotional and informational support); and availability and scheduling. CONCLUSIONS: This article identifies components of healthcare that families find helpful and desirable.Implications for RehabilitationFamily-centred service (FCS) is an established approach for delivering services in children's rehabilitation and healthcare.However, parents continue to experiences aspects of care that are not family-centred.Parents of children with disabilities identified components of care that they want from healthcare services.New components of care that go beyond what was identified in the original measure of FCS (MPOC) include: effective communication (vs information giving); practical support (in addition to emotional and informational support); and availability and scheduling.
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PURPOSE: This study explored the feasibility, impact and parent experiences of ENVISAGE (ENabling VISions And Growing Expectations)-Families, a parent-researcher co-designed and co-led program for parents/caregivers raising children with early-onset neurodisabilities. METHODS: Parents/caregivers of a child with a neurodisability aged ≤6 years, recruited in Australia and Canada, participated in five weekly online workshops with other parents. Self-report measures were collected at baseline, immediately after, and 3 months post-ENVISAGE-Families; interviews were done following program completion. Quantitative data were analyzed with generalized estimating equations and qualitative data using interpretive description methodology. RESULTS: Sixty-five parents (86% mothers) were recruited and 60 (92%) completed the program. Strong evidence was found of effects on family empowerment and parent confidence (all p ≤ 0.05 after the program and maintained at 3-month follow-up). The ENVISAGE-Families program was relevant to parents' needs for: information, connection, support, wellbeing, and preparing for the future. Participants experienced opportunities to reflect on and/or validate their perspectives of disability and development, and how these perspectives related to themselves, their children and family, and their service providers. CONCLUSIONS: ENVISAGE was feasible and acceptable for parent/caregivers. The program inspired parents to think, feel and do things differently with their child, family and the people who work with them.Implications for rehabilitationENVISAGE (ENabling VISions And Growing Expectations)-Families is a co-designed, validated parent/researcher "early intervention and orientation" program for caregivers raising a child with neurodevelopmental disabilities (NDDs).ENVISAGE-Families empowered parents' strengths-based approaches to their child, family, disability, and parenting.ENVISAGE-Families increased caregivers' confidence in parenting children with NDD's and provided them tools to support connection, collaboration, and wellbeing.Raising children with NDD can have a profound impact on caregivers, who can benefit from strengths-based, future focused supports early in their parenting experience.
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Cuidadores , Padres , Femenino , Niño , Humanos , Madres , Responsabilidad Parental , Intervención Educativa PrecozRESUMEN
PURPOSE: Family-centred service is considered best practice in paediatric acquired brain injury (ABI) rehabilitation. However, there is no universal model to guide clinicians and services in implementing this approach with a lack of research evidence informed by the lived experience of families. This study explored experiences of family-centred service during rehabilitation from the perspectives of parents/caregivers, siblings, and children/adolescents with ABI. MATERIALS AND METHODS: Semi-structured interviews were conducted with participants from eight families, and included 10 parents/caregivers, five siblings, and four children/adolescents with moderate to severe ABI. Interview transcripts and additional data were analysed using constructivist grounded theory methods. RESULTS: Two themes and five sub-themes were developed: (1) Working together as a team: Valuing clinicians' expert knowledge; Doing rehabilitation together; and Sharing family knowledge; and (2) Navigating rehabilitation as a family: Recognising family needs; Juggling family life; and Making rehabilitation work for the family. Participants reflected on the centrality of the child/adolescent with ABI during rehabilitation, and the ways that family needs, life, and involvement in rehabilitation change over time. CONCLUSIONS: These findings highlight the importance of clinicians actively seeking to understand families' unique contexts, needs, and priorities during rehabilitation through two-way information sharing with families. Through developing a greater understanding of families' unique contexts, clinicians can be better placed to tailor rehabilitation according to their unique circumstances and needs.Implications for rehabilitationRehabilitation involves active collaboration between families and clinicians that is responsive to changing needs over time.Family involvement in rehabilitation is shaped by family life, and families have unique needs following paediatric acquired brain injury.It is important that clinicians strive to develop an understanding of families' unique needs, values, preferences, and lives to determine how to best support and involve them in rehabilitation.
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Lesiones Encefálicas , Familia , Niño , Humanos , Adolescente , Padres , Relaciones Familiares , Cuidadores , Lesiones Encefálicas/rehabilitación , Investigación CualitativaRESUMEN
Background: Children and adolescents who sustain an acquired brain injury (ABI) can experience acute and ongoing difficulties in a range of cognitive and functional domains, and their families often experience significant life changes and challenges. Family-centred service is therefore considered best practice in paediatric ABI rehabilitation. Despite widespread acceptance of family-centred service in this context, recent literature indicates that family needs are often unrecognised and unmet following paediatric ABI. Although family-centred service was introduced in the field of developmental disability over five decades ago, there remains a lack of clarity about how this approach is implemented in practice. Additionally, limited literature has discussed the implementation of family-centred service in paediatric ABI rehabilitation despite key differences between ABI and developmental disability, including nature and timing of onset, rehabilitation foci, and impacts on families. Aims: In this review, we aim to: (i) outline common sequelae of paediatric ABI with a focus on family outcomes; (ii) summarise paediatric rehabilitation and highlight opportunities for family support and involvement; (iii) discuss and synthesise literature across paediatric ABI rehabilitation and family-centred service to highlight gaps in knowledge and practice; and (v) identify clinical implications and future research directions. Conclusions: There is a clear need for greater clarity and consensus regarding the implementation of family-centred service in paediatric ABI rehabilitation. This review highlights the importance of providing professional development opportunities for clinicians to increase competency in practising in a family-centred manner, and opportunities to actively involve, empower and support families within rehabilitation. This review also emphasises the importance of services implementing relevant supports to address family needs where possible and developing clear referral pathways so that families can access further support elsewhere when needed.
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BACKGROUND: The American Academy of Pediatrics (AAP) has called for a universal system of developmental screening and surveillance to enhance early detection and intervention for children. While the need and potential impact of universal screening is well documented, recent reports show that screening rates have not reached expected goals and gaps remain in terms of effective follow-up and referral to early intervention (EI) services. Few studies have explored parent and child experiences of developmental screening, which would aid researchers, practitioners and policymakers in improving early detection and referral to EI. The purpose of this qualitative study was to understand the experiences of caregivers and children who received developmental screening across different service sectors, including the type of screening received, location of screening, experiences during the screening process and the follow-up interventions received following screening. METHODS: Individual interviews were conducted with 31 caregivers. A descriptive qualitative design allowed for the exploration of caregiver experiences with developmental screening. Thematic analysis was utilized to categorize caregiver reflections prior to, during and following developmental screening events. RESULTS: Analysis revealed five themes that described caregivers' experiences with screening and assessment for their child: (1) parent's goals of screening; (2) screening preparation and support; (3) parent/child response to screening; (4) result reporting and follow-up; (5) overall satisfaction with screening process. Each theme was composed of several subthemes. CONCLUSIONS: Caregivers see the importance of developmental screening, caregivers and children respond well to screening delivered by various providers in multiple settings and caregivers find the information gleaned from screening events important in planning for their child's developmental trajectory. Key places where improvements can be made to further bolster parental engagement and satisfaction include screening preparation and follow-up.
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Cuidadores , Padres , Niño , Intervención Educativa Precoz , Familia , Humanos , Satisfacción PersonalRESUMEN
BACKGROUND: Parents of children with congenital limb reduction deficiency have an essential role in making treatment decisions during their child's first years of life. Treatment options usually concern surgical and/or prosthetic treatment. To tailor treatment options to fit different family values and priorities, the family-centred approach indicates the importance of understanding the parental role in partnership with health care professionals. The aim of this study was to describe parents' experiences of their role in decision-making and treatment for children with congenital limb reduction deficiency. METHODS: A descriptive design with a qualitative approach was used. Semi-structured interviews were conducted with 17 parents (12 mothers and 5 fathers) of children with upper and/or lower limb deficiency (mean age 5.9 years). The interview data were analysed using qualitative content analysis with an inductive approach. RESULTS: Two major themes emerged from the data. The first theme, being a decision maker for someone else, was described as an ambivalent parental role, including collaboration within the family and with health care professionals. The second theme, becoming and being a treatment supporter in the child's everyday life, was made up of four categories: being a supporter of the child in everyday activities, mentoring the child to handle encounters with others, becoming a coordinator of information and being an 'extended arm' of the health care provision for the child. CONCLUSIONS: This study enhances our understanding of the parental role in decision-making and treatment for children with congenital limb reduction deficiency. The results may contribute to the continued development of the family-centred service approach by providing guidelines for treatment programmes, with the goal of improving decision support and broadening the support for parents during treatment for these children.
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Toma de Decisiones , Deformidades Congénitas de las Extremidades/terapia , Padres/psicología , Adulto , Niño , Preescolar , Femenino , Humanos , Masculino , Persona de Mediana Edad , Relaciones Profesional-Familia , Investigación Cualitativa , SueciaRESUMEN
OBJECTIVES: The concept of family-centred service (FCS), which is recognized as the standard of paediatric health care, emerged from Western countries, and integration of FCS can be challenging especially in non-Western countries. This study aims to explore family-centred behaviours of paediatric residents and their perspectives on FCS being trained in a non-Western country before and 6 months after an educational workshop. It was hypothesized that the workshop will increase the awareness of paediatric residents regarding FCS and improve their self-reported family-centred practices. STUDY DESIGN: Ninety-nine residents who are in a 4-year paediatric residency program were included. A 2-hr interactive workshop was conducted for all participants. The measure of processes of care for service providers was used to measure self-reported family-centred practices of paediatric residents, and a study specific questionnaire was utilized to understand their perspectives towards FCS prior to and 6 months after the workshop. RESULTS: There were statistically significant increases in the measure of processes of care for service providers scores suggesting improvements in self-reported family-centred practices of participants 6 months after the workshop. Moreover, the percentage of participants describing themselves as knowledgeable and competent increased. Viewpoints of paediatric residents on the implementation of FCS and several challenges perceived by participants were highlighted. CONCLUSION: This is the first study conducted in a non-Western country exploring perspectives of paediatric residents towards the implementation of FCS and measuring their self-reported family-centred practices before and after an educational workshop. The study revealed that although a 2-hr interactive workshop improved the self-reported family-centred practices of participants, they still found FCS challenging.
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Actitud del Personal de Salud , Servicios de Salud del Niño/organización & administración , Internado y Residencia , Atención Dirigida al Paciente/organización & administración , Pediatría/educación , Adulto , Niño , Femenino , Humanos , Masculino , Pautas de la Práctica en Medicina , Relaciones Profesional-Familia , Encuestas y Cuestionarios , TurquíaRESUMEN
PURPOSE: Collaborative, child- and family-centred goal setting is essential in paediatric, acquired brain injury (ABI) rehabilitation. This study aims to understand which goals children and families prioritize and how accurately therapists predict expected levels of achievement for these goals. METHODS: Routinely collected Goal Attainment Scale-Light data from 122 children with severe ABI receiving residential rehabilitation were retrospectively analysed. Goals were mapped onto the International Classification of Functioning, Disability and Health. Descriptive analysis of accuracy of therapists' prediction of goal achievement was conducted. RESULTS: Eight-hundred sixty goals were set: 82% in activities and participation domains, most commonly mobility, self-care, and communication chapters. Forty-six per cent of therapist-set expected levels of achievement for these goals were met at the expected level, and 24% were exceeded. Chapters with the highest prediction accuracy included two environmental chapters and one body structure and function. Accurate prediction of activity and participation goals varied (35% in general tasks and demands to 58.8% in major life areas). CONCLUSIONS: Children and families prioritize mobility, self-care, and communication during ABI residential rehabilitation. Setting expected outcomes for these goals is challenging, as demonstrated by the variety in accurate prediction rates between and within chapters. Families need to be aware of this uncertainty during goal-setting discussions.
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Lesiones Encefálicas/rehabilitación , Personas con Discapacidad/rehabilitación , Enfermería de la Familia , Logro , Actividades Cotidianas , Adolescente , Lesiones Encefálicas/fisiopatología , Lesiones Encefálicas/psicología , Niño , Preescolar , Personas con Discapacidad/psicología , Femenino , Objetivos , Humanos , Lactante , Masculino , Evaluación de Resultado en la Atención de Salud , Centros de Rehabilitación , Estudios RetrospectivosRESUMEN
Evaluation of the effectiveness of augmentative and alternative communication (AAC) interventions requires reliable measures that are responsive to change. The aim of this study was to explore the potential of the Family Impact of Assistive Technology Scale for AAC (FIATS-AAC) to detect functional change in children and youth with AAC needs, aged 3-17 years, and their families, 6 and 12 weeks after receiving a graphic-based, speech-generating device (SGD). Parents whose children were awaiting a SGD as part of their regular AAC service participated in the study. In all, 45 parents completed the FIATS-AAC during each of three phone interviews: at the time of device delivery, and then 6 weeks and 12 weeks after receiving the device. Children and youth were aged 3-16 years (M = 7.8, SD = 3.3) and were mostly context-dependent communicators. Paired t-tests indicated statistically significant gains in functioning from baseline to both 6 and 12 weeks after receiving the AAC device. Effect sizes were 0.41 and 0.38, respectively. This study provides initial support for the ability of the FIATS-AAC to detect functional changes in children and youth and their families after receiving a graphic-based SGD.
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Equipos de Comunicación para Personas con Discapacidad , Trastornos de la Comunicación/rehabilitación , Padres , Adolescente , Niño , Preescolar , Femenino , Humanos , Masculino , Diferencia Mínima Clínicamente Importante , Evaluación de Resultado en la Atención de Salud , Medio Social , Encuestas y CuestionariosRESUMEN
BACKGROUND: The measure of processes of care (MPOC) is a widely used instrument to assess parents' perception of the extent to which healthcare services they and their child receive are family centred. The purpose of this study was to examine the reliability and validity of the Korean translation of the MPOC (Korean MPOC). METHODS: The Korean MPOC was completed by 198 parents of children receiving rehabilitation services in five provinces in South Korea. According to the Canadian validation procedures, analyses for internal consistency, construct and concurrent validity, and test-retest reliability were performed. RESULTS: The Korean MPOC demonstrated adequate internal consistency, with Cronbach's alpha ranging from .85 to .98. Confirmative analyses of the scale structure support the construct validity of the Korean MPOC. The Pearson correlations r between the MPOC scale scores and Client Satisfaction Inventory score ranged from .60 to .83, supporting the concurrent validity of the Korean MPOC. The intraclass correlation coefficients were greater than .80 for all five scales, demonstrating good test-retest reliability. CONCLUSIONS: The Korean MPOC has good psychological properties and can be recommended for evaluation of processes of paediatric rehabilitation in Korea.
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Lesiones Encefálicas/rehabilitación , Servicios de Salud del Niño , Enfermedad Crónica/rehabilitación , Discapacidades del Desarrollo/rehabilitación , Salud de la Familia/normas , Padres/psicología , Atención Dirigida al Paciente/normas , Traducciones , Adulto , Niño , Servicios de Salud del Niño/normas , Preescolar , Femenino , Humanos , Masculino , Satisfacción del Paciente/estadística & datos numéricos , Evaluación de Procesos, Atención de Salud , Relaciones Profesional-Familia , Reproducibilidad de los Resultados , República de CoreaRESUMEN
BACKGROUND: The decision for families to proceed with botulinum toxin-A (BoNT-A) injections for managing childhood conditions involving hypertonia can be complex. Family-centred care is a service model that facilitates supporting families in this decision-making process. Understanding families' experiences of services is critical to developing family-centred care. The aim of this project was therefore to increase understanding of the experiences of families of children attending a BoNT-A service in order to improve the service and its family-centred approach to care. METHOD: Sixteen staff of a BoNT-A service participated in a patient journey mapping exercise. Nine families of the service participated in in-depth interviews. Interviews were audio-recorded and transcribed verbatim. Data from the staff session and interviews were analysed independently using grounded, hermeneutic thematic analysis. RESULTS: Staff sessions revealed 5 core themes that related to impacting on the family experience. Family interviews revealed 4 core themes, with 7 subthemes and 1 latent theme. CONCLUSIONS: Areas of importance identified by families relating to BoNT-A treatment included acknowledgement of individual needs, care coordination, empowerment of families and patients, consistency in service delivery, and the distressing nature of appointment and decision-making. Comparison of the data from the staff patient journey mapping and family interviews suggested that staff have a good but incomplete understanding of the factors important to families, highlighting the need for consumer engagement in establishing family-centred care. The themes identified can guide the provision of family-centred BoNT-A injection clinics.
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Toxinas Botulínicas Tipo A/uso terapéutico , Servicios de Salud del Niño/normas , Prestación Integrada de Atención de Salud/normas , Fármacos Neuromusculares/uso terapéutico , Relaciones Profesional-Familia , Mejoramiento de la Calidad , Adaptación Psicológica , Adolescente , Actitud del Personal de Salud , Actitud Frente a la Salud , Niño , Servicios de Salud del Niño/organización & administración , Preescolar , Femenino , Humanos , Masculino , Nueva Gales del Sur , Estrés Psicológico/etiologíaRESUMEN
BACKGROUND: With family-centred care widely recognized as a cornerstone for effective assistive technology service provision, the current study was undertaken to investigate to what extent such approaches were used by schools when assistive technology assessments and implementation occurred in the classroom. METHOD: In this cross-sectional study, we compare survey results from parents (n = 76), school staff (n = 33) and allied health professionals (n = 65) with experience in the use of high-tech assistive technology. Demographic characteristics and the stakeholders' perceived helpfulness and frequency attending assessment and set-up sessions were captured. To evaluate how family-centred the assistive technology services were perceived to be, the parents filled out the Measure of Processes of Care for Caregivers, and the professionals completed the Measure of Processes of Care for Service Providers. Descriptive statistics and one-way analysis of variance were used to conduct the data analysis. RESULTS: Findings show that parents are more involved during the assessment stage than during the implementation and that classroom teachers are often not involved in the initial stage. Speech pathologists in particular are seen to be to a great extent helpful when implementing assistive technology in the classroom. This study found that family-centred service is not yet fully achieved in schools despite being endorsed in early intervention and disability services for over 20 years. No statistically significant differences were found with respect to school staff and allied health professionals' roles, their years of experience working with students with cerebral palsy and the scales in the Measure of Processes of Care for Service Providers. CONCLUSION: To enhance the way technology is matched to the student and successfully implemented, classroom teachers need to be fully involved in the whole assistive technology process. The findings also point to the significance of parents' involvement, with the support of allied health professionals, in the process of selecting and implementing assistive technology in the classroom.
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Parálisis Cerebral , Niños con Discapacidad , Educación Especial/organización & administración , Atención Dirigida al Paciente/organización & administración , Instituciones Académicas , Dispositivos de Autoayuda/estadística & datos numéricos , Estudiantes , Adolescente , Australia , Parálisis Cerebral/economía , Parálisis Cerebral/rehabilitación , Niño , Estudios Transversales , Prestación Integrada de Atención de Salud/organización & administración , Niños con Discapacidad/psicología , Niños con Discapacidad/rehabilitación , Educación Especial/economía , Femenino , Investigación sobre Servicios de Salud , Humanos , Masculino , Padres/psicología , Satisfacción del Paciente/estadística & datos numéricos , Atención Dirigida al Paciente/economía , Evaluación de Procesos, Atención de Salud , Relaciones Profesional-Familia , Instituciones Académicas/economía , Dispositivos de Autoayuda/economía , Participación de los Interesados , Estudiantes/psicologíaRESUMEN
Background: Familycentred care (FCC) is recognized as the model of best practice for the provision of services for children who have physical disabilities and their families. Objective: To assess the overall perception of FCC provided in an Italian network of 17 rehabilitation services, as perceived by parents of children with cerebral palsy and professionals, and to explore whether children, families, service providers and servicerelated characteristics influence parent satisfaction regarding service provision in an FCC practice. Methods: The Measure of Processes of Care (MPOC20) for parents/caregivers and the Measure of Processes of Care for Service Providers (MPOCSP) for healthcare providers were used. For the purposes of the study, an ad hoc information form was developed to collect information concerning children, families, service providers and services. Results: A total of 382 parents/caregivers and 269 healthcare providers completed the MPOC questionnaires. Parents and service providers both identified the domains for enabling partnerships and interpersonal sensitivity as a strength, while the domain relating to general information was always scored the lowest. An advanced maternal age, being a single parent, being unemployed and having lower socioeconomic status were factors identified as individually predictive of lower FCC scores on the MPOC20. Higher intensity treatment, inpatient services, primary healthcare settings and settings identified with limited financial resources and reduced space/time for each family were other variables significantly associated with less favourable MPOC20 ratings. Conclusions: The perception of FCC provided was fairly positive, with some areas of improvement, such as the domain of provision of information. Professionals should, therefore, provide better communication and take more time in giving information and attention to parents. Potential sources of variation in parent perceptions of FCC based on family characteristics and the organization of services highlight the importance the need to support services through the provision of greater financial and human resources.
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Servicios de Salud del Adolescente , Parálisis Cerebral/rehabilitación , Servicios de Salud del Niño , Adolescente , Cuidadores , Niño , Preescolar , Prestación Integrada de Atención de Salud/organización & administración , Familia , Femenino , Personal de Salud/estadística & datos numéricos , Hospitalización/estadística & datos numéricos , Humanos , Lactante , Recién Nacido , Relaciones Interpersonales , Italia , Masculino , Atención Primaria de Salud/estadística & datos numéricos , Adulto JovenRESUMEN
BACKGROUND: A family-centred approach to services of children with disabilities is widely accepted as the foundational approach to service delivery in paediatric health care. The 56 items of the Measure of Processes of Care questionnaire (MPOC-56) all reflect elements of family-centred service. In this study, we investigated which elements of family-centred service are rated important by parents of children with cerebral palsy by adding a question on importance to each item of the MPOC-56 (MPOC-56-I). METHODS: In total, 175 parents of children with cerebral palsy completed the MPOC-56-I. For each MPOC item, parents were asked to rate the importance on a 5-point scale ranging from 0 (not important at all) up to and including 4 (very important). We used Spearman's rank correlation coefficient to further explore the variation in parents' importance ratings. RESULTS: Parents' importance ratings of the MPOC-56 items varied. The percentage of parents rating an item important (importance rating 3 or 4) varied between 43.8% and 96.8%. The percentage of parents rating an item unimportant (rating 0 or 1) varied between 0.0% and 20.3%, and the percentage of parents rating an item neutral (rating 2) varied between 3.0% and 36.0%. Most diverse importance ratings were found for five items concerning the provision of general information. Three correlations between these items and child and parent characteristics were found. Six items were rated important by almost all (≥95%) parents. These items concern elements of specific information about the child, co-ordinated and comprehensive care for child and family and enabling and partnership. CONCLUSIONS: Parents rate the importance of family-centred services for their situation in various ways. These findings endorse that family-centred services should recognize the uniqueness of families and should be tailored to what parents find important.
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Parálisis Cerebral , Servicios de Salud del Niño/normas , Prestación Integrada de Atención de Salud/normas , Niños con Discapacidad , Padres/psicología , Satisfacción del Paciente/estadística & datos numéricos , Atención Dirigida al Paciente/normas , Adulto , Parálisis Cerebral/rehabilitación , Niño , Servicios de Salud del Niño/organización & administración , Preescolar , Niños con Discapacidad/rehabilitación , Femenino , Humanos , Estudios Longitudinales , Masculino , Países Bajos , Evaluación de Procesos, Atención de Salud , Relaciones Profesional-Familia , Encuestas y CuestionariosRESUMEN
BACKGROUND: Parents have a vital influence on the participation of their child with a physical disability. The aim of this study is to gain insight into parents' own daily actions, challenges, and needs while supporting their child with a physical disability at home, at school, and in the community. An additional objective of this study is to refine the preliminary thematic framework previously identified in a scoping review. METHODS: A qualitative research inquiry was performed based on using a diary over a 7-day period to gather data. To systematically organise data into a structured format, content analysis has been applied using both inductive and deductive reasoning guided by the existing preliminary thematic framework. RESULTS: Analysis of the eligible diaries shows that the actions mentioned by the 47 parents describe several efforts to enhance participation of their children with a physical disability by using, enabling, or changing the social and physical environment, or by supporting their child to perform or engage in meaningful activities. Those parents' actions are primarily a result of challenges caused by restrictions in social and physical environments. Parental responses highlighted, above all, the need for environments designed for all people. Based on the findings a redefined thematic framework is presented. CONCLUSIONS: Parents' actions, challenges, and needs are mainly directed towards the social or/and physical environment. The presented thematic framework can offer practitioners knowledge to support parents. More work is necessary to provide tailored approaches. Paediatric rehabilitation may need to address the importance of the environment on the participation of a child with a physical disability.
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Niños con Discapacidad/rehabilitación , Relaciones Padres-Hijo , Responsabilidad Parental/psicología , Padres/psicología , Participación Social , Actividades Cotidianas , Niño , Preescolar , Ambiente , Femenino , Humanos , Masculino , Evaluación de Necesidades , Países Bajos , Investigación Cualitativa , Instituciones Académicas , Medio Social , Apoyo SocialRESUMEN
BACKGROUND: From the moment a child is diagnosed as having cerebral palsy, families have to cope on a daily basis with the multifaceted challenges of life-long disability management. Family-centred service is embraced as a 'best practice' model because of accumulating evidence supporting its positive influence on parents and children's outcomes. Nevertheless, research comparing parent and provider perspectives on family-centred practices of educational service providers in education settings is scarce. The aims of this study were to compare the extent to which parents and conductors experience the service delivery in Tsad Kadima, the Association for Conductive Education in Israel, as being family-centred, as well as comparing parents' perception of different educational settings as being family-centred. METHODS: Measurements of family-centeredness, the Israeli Measure of Processes of Care for families (MPOC-20) and for service providers (MPOC-SP), were administrated to 38 teacher conductors and 83 families of children with cerebral palsy (aged 1-14), from different conductive educational settings. RESULTS: Parents and conductors perceive Conductive Education service as being highly family centred in most domains, rating respectful and supportive care the highest and providing general information the lowest, thus indicating an area where improvements should be made. Parents perceived the service they receive to be more family-centred than conductor's perception about their own activities. In addition, educational setting (day care, pre-school and school) was found to be associated with parent's scores. CONCLUSIONS: The current study, which is the first to examine family-centred service provision in a conductive special education setting, from the perspectives of both parents and conductors, provides significant evidence for high-quality services in these settings.
Asunto(s)
Cuidadores/psicología , Parálisis Cerebral/rehabilitación , Servicios de Salud del Niño/organización & administración , Atención a la Salud/organización & administración , Educación Especial/organización & administración , Adolescente , Actitud Frente a la Salud , Niño , Preescolar , Niños con Discapacidad/rehabilitación , Humanos , Lactante , Israel , Padres/psicología , Atención Dirigida al Paciente/organización & administración , Relaciones Profesional-FamiliaRESUMEN
AIM: To describe the course of parents' perceptions of the family centredness of rehabilitation services provided to their children with cerebral palsy (CP) before and after the transition from preschool to school-based services. BACKGROUND: Parents of 59 children with CP aged 2.5 to 4.5 years filled in the 56-item Measure of Processes of Care (MPOC-56) on three occasions pre (2) and post (1) transition to school-based services. Friedman tests were used to describe changes in parents' perceptions over time. Mann-Whitney U tests were used to describe differences in course of parents' perceptions between regular school and special school or day care. RESULTS: Parents' perceptions of preschool services were stable between the ages of 2.5 and 3.5 years, with a decline after transition on four of the five domains of the MPOC (P < 0.05). The domain providing general information was scored lowest (median at baseline 3.56, IQR 2.39) compared with the four other MPOC domains, but remained stable over time. No differences in course of parental perceptions were found for school type. CONCLUSION: The transition from preschool to school-based services for children with CP is associated with a decrease in parents' perception of family centredness independent of the type of school. The transition in services has a negative impact on perceived family-centred practices.
Asunto(s)
Parálisis Cerebral/rehabilitación , Servicios de Salud del Niño/organización & administración , Prestación Integrada de Atención de Salud/organización & administración , Niños con Discapacidad/rehabilitación , Padres/psicología , Transferencia de Pacientes/organización & administración , Atención Dirigida al Paciente/normas , Servicios de Salud Escolar/normas , Parálisis Cerebral/psicología , Parálisis Cerebral/terapia , Servicios de Salud del Niño/normas , Preescolar , Niños con Discapacidad/psicología , Niños con Discapacidad/estadística & datos numéricos , Femenino , Humanos , Estudios Longitudinales , Masculino , Países Bajos , Evaluación de Procesos, Atención de Salud , Relaciones Profesional-Familia , Estudios Prospectivos , Encuestas y CuestionariosRESUMEN
BACKGROUND: Family-centred services (FCS) are best practice in paediatric rehabilitation and describe philosophies and approaches to medical care that emphasize the partnership and involvement of parents. While evidence supports FCS, there are complexities to its successful implementation. This mixed-methods study aimed to measure the extent to which parents and the healthcare provider (HCP) perceive service provision as being family centred, and to describe barriers and facilitators to the delivery of FCS. METHODS: Parents of children participating in a rehabilitation programme and HCPs providing services participated in this study. Parents completed the measure of processes of care-20 and participated in interviews, while HCPs completed the measure of processes of care-service providers and participated in a focus group. RESULTS: Quantitative analysis revealed that parents were mostly satisfied with features of FCS, which included communication and support between parents and HCPs, respect of diversity and parental collaboration and participation. Parents identified communication methods and psychosocial needs as areas that facilitated but sometimes detracted from FCS. Institutional barriers led to the identification of areas for improvement identified by multiple stakeholders. HCPs identified more areas for improvement than parents. CONCLUSION: When considering these barriers, it is evident that implementation is a complex process, impacted by institutional barriers. FCS needs to be investigated further, and systemic interventions should be used to facilitate its implementation.