Tasks performed by parents to enable telepractice for children with communication disorders: an interview study with clinicians and parents.

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.

[1]  S. Neuharth-Pritchett,et al.  Calculating “At-Risk” Rates and Service Utilization Disparities in Early Intervention and Early Childhood Special Education Services , 2022, Adversity and Resilience Science.

[2]  A. Majnemer,et al.  Telerehabilitation for Children and Youth with Developmental Disabilities and Their Families: A Systematic Review , 2022, Physical & occupational therapy in pediatrics.

[3]  E. Kwok,et al.  Factors influencing the success of telepractice during the COVID‐19 pandemic and preferences for post‐pandemic services: An interview study with clinicians and parents , 2022, International journal of language & communication disorders.

[4]  C. Camden,et al.  Acceptability of Pediatric Telerehabilitation Interventions Provided by Physical Therapists and Occupational Therapists—A Scoping Review , 2022, Physical & occupational therapy in pediatrics.

[5]  M. Phoenix,et al.  Qualitative health research in the fields of developmental medicine and child neurology , 2022, Developmental medicine and child neurology.

[6]  T. Theologis,et al.  Telehealth and Remote Interventions for Children With Cerebral Palsy: Scoping Review , 2022, JMIR rehabilitation and assistive technologies.

[7]  Asma Alonazi Effectiveness and Acceptability of Telerehabilitation in Physical Therapy during COVID-19 in Children: Findings of a Systematic Review , 2021, Children.

[8]  A. Bhat Analysis of the SPARK study COVID‐19 parent survey: Early impact of the pandemic on access to services, child/parent mental health, and benefits of online services , 2021, Autism research : official journal of the International Society for Autism Research.

[9]  L. Mazzone,et al.  Parental Stress and Disability in Offspring: A Snapshot during the COVID-19 Pandemic , 2021, Brain sciences.

[10]  R. Montirosso,et al.  Stress symptoms and resilience factors in children with neurodevelopmental disabilities and their parents during the COVID-19 pandemic. , 2021, Health psychology : official journal of the Division of Health Psychology, American Psychological Association.

[11]  C. Capio,et al.  Teletherapy for children with developmental disorders during the COVID-19 pandemic in the Philippines: a mixed-methods evaluation from the perspectives of parents and therapists , 2021, medRxiv.

[12]  M. Bean,et al.  Parents Are Stressed! Patterns of Parent Stress Across COVID-19 , 2021, Frontiers in Psychiatry.

[13]  R. Ramsden,et al.  Parent engagement and therapeutic alliance in allied health teletherapy programs. , 2021, Health and Social Care in the community.

[14]  A. Samuels,et al.  A scoping review of parental roles in rehabilitation interventions for children with developmental delay, disability, or long-term health condition. , 2021, Research in developmental disabilities.

[15]  J. Law,et al.  Tele-practice for children and young people with communication disabilities: Employing the COM-B model to review the intervention literature and inform guidance for practitioners. , 2021, International journal of language & communication disorders.

[16]  A. Mendoza Diaz,et al.  Impact of the COVID‐19 pandemic on the well‐being of children with neurodevelopmental disabilities and their parents , 2021, Journal of paediatrics and child health.

[17]  A. Murphy,et al.  The Impact of the Novel Coronavirus Disease 2019 on Therapy Service Delivery for Children with Disabilities , 2020, The Journal of Pediatrics.

[18]  OUP accepted manuscript , 2021, Journal Of Pediatric Psychology.

[19]  R. Hastings,et al.  Factors influencing access to early intervention for families of children with developmental disabilities: A narrative review , 2020, Journal of applied research in intellectual disabilities : JARID.

[20]  I. Roskam,et al.  Parental burnout: Moving the focus from children to parents. , 2020, New directions for child and adolescent development.

[21]  C. Camden,et al.  Pediatric Teleheath: Opportunities Created by the COVID-19 and Suggestions to Sustain Its Use to Support Families of Children with Disabilities , 2020, Physical & occupational therapy in pediatrics.

[22]  B. Russell,et al.  Initial Challenges of Caregiving During COVID-19: Caregiver Burden, Mental Health, and the Parent–Child Relationship , 2020, Child Psychiatry & Human Development.

[23]  G. Iannizzotto,et al.  Telerehabilitation for Improving Adaptive Skills of Children and Young Adults with Multiple Disabilities: a Systematic Review , 2020 .

[24]  I. Gélinas,et al.  Mediating a Fragmented System: Partnership Experiences of Parents of Children with Neurodevelopmental and Neuromuscular Disabilities , 2020 .

[25]  N. Scarinci,et al.  What does “engagement” mean in early speech pathology intervention? A qualitative systematised review , 2020, Disability and rehabilitation.

[26]  P. Rosenbaum,et al.  A grounded theory of parents’ attendance, participation and engagement in children’s developmental rehabilitation services: Part 2. The journey to child health and happiness , 2020, Disability and rehabilitation.

[27]  S. Guerin,et al.  Parents’ experiences of services for their child with a life-limiting neurodevelopmental disability , 2020, Children's Health Care.

[28]  Matthew J. W. McLarnon,et al.  The complexities and synergies of engagement: an ethnographic study of engagement in outpatient pediatric rehabilitation sessions , 2019, Disability and rehabilitation.

[29]  C. Dunst,et al.  Family-centered practices and the parental well-being of young children with disabilities and developmental delay. , 2019, Research in developmental disabilities.

[30]  Genevieve Currie,et al.  ‘It would be much easier if we were just quiet and disappeared’: Parents silenced in the experience of caring for children with rare diseases , 2019, Health expectations : an international journal of public participation in health care and health policy.

[31]  R. Smeets,et al.  Therapy-related stress in parents of children with a physical disability: a specific concept within the construct of parental stress , 2019, Disability and rehabilitation.

[32]  H. Roddam,et al.  What do parents think about their involvement in speech-language pathology intervention? A qualitative critically appraised topic , 2019, Evidence-Based Communication Assessment and Intervention.

[33]  C. Trivette,et al.  Parents’ Experiences of Completing Home Practice for Speech Sound Disorders , 2019, Journal of Early Intervention.

[34]  P. Rosenbaum,et al.  Presenting the model of risk, disability and hard-to-reach families to inform early intervention services , 2019, Disability and rehabilitation.

[35]  P. Rosenbaum,et al.  Parents' attendance, participation and engagement in children’s developmental rehabilitation services: Part 1. Contextualizing the journey to child health and happiness , 2019, Disability and rehabilitation.

[36]  J. Baumbusch,et al.  Alone in a Crowd? Parents of Children with Rare Diseases’ Experiences of Navigating the Healthcare System , 2018, Journal of Genetic Counseling.

[37]  E. Pellicano,et al.  ‘The dots just don’t join up’: Understanding the support needs of families of children on the autism spectrum , 2018, Autism : the international journal of research and practice.

[38]  E. Zech,et al.  Does Informal Caregiving Lead to Parental Burnout? Comparing Parents Having (or Not) Children With Mental and Physical Issues , 2018, Front. Psychol..

[39]  I. Roskam,et al.  Exhausted Parents: Sociodemographic, Child-Related, Parent-Related, Parenting and Family-Functioning Correlates of Parental Burnout , 2018 .

[40]  Carmel Bradshaw,et al.  Employing a Qualitative Description Approach in Health Care Research , 2017, Global qualitative nursing research.

[41]  Kristin N. Ray,et al.  Family Perspectives on Telemedicine for Pediatric Subspecialty Care. , 2017, Telemedicine journal and e-health : the official journal of the American Telemedicine Association.

[42]  Lorraine Sherr,et al.  Global services and support for children with developmental delays and disabilities: Bridging research and policy gaps , 2017, PLoS medicine.

[43]  Hoe C Lee,et al.  Parent-Mediated Intervention Training Delivered Remotely for Children With Autism Spectrum Disorder Living Outside of Urban Areas: Systematic Review , 2017, Journal of medical Internet research.

[44]  J. Marshall,et al.  Co-working: Parents’ conception of roles in supporting their children’s speech and language development , 2017 .

[45]  B. Elbaum,et al.  Parents’ Experiences Navigating Intervention Systems for Young Children With Mild Language Delays , 2017 .

[46]  G. King,et al.  Family‐oriented services in pediatric rehabilitation: a scoping review and framework to promote parent and family wellness , 2017, Child: care, health and development.

[47]  A. Bundy,et al.  Access to therapy services for people with disability in rural Australia: a carers’ perspective , 2017, Health & social care in the community.

[48]  R. Chafe The Value of Qualitative Description in Health Services and Policy Research , 2017, Healthcare policy = Politiques de sante.

[49]  S. Mcleod,et al.  Parental beliefs and experiences regarding involvement in intervention for their child with speech sound disorder , 2016 .

[50]  R. Ramsden,et al.  Speech-language pathology teletherapy in rural and remote educational settings: Decreasing service inequities , 2016, International journal of speech-language pathology.

[51]  Jill Ashburner,et al.  Remote versus face-to-face delivery of early intervention programs for children with autism spectrum disorders: Perceptions of rural families and service providers , 2016 .

[52]  Karen Colorafi,et al.  Qualitative Descriptive Methods in Health Science Research , 2016, HERD.

[53]  Sarah K Russell,et al.  Parent Perceptions of Care Received by Children With an Autism Spectrum Disorder. , 2016, Journal of pediatric nursing.

[54]  J. Ripat,et al.  Intense parenting: a qualitative study detailing the experiences of parenting children with complex care needs , 2015, BMC Pediatrics.

[55]  L. Zwaigenbaum,et al.  Parents' and professionals' perceptions of family-centered care for children with autism spectrum disorder across service sectors. , 2013, Social science & medicine.

[56]  I. Bakopoulou,et al.  Interventions for children with speech, language and communication needs: An exploration of current practice , 2012 .

[57]  C. Carroll “It's not everyday that parents get a chance to talk like this”: Exploring parents' perceptions and expectations of speech-language pathology services for children with intellectual disability , 2010, International journal of speech-language pathology.

[58]  L. Roggman,et al.  Parent Involvement in Early Childhood Home Visiting , 2008 .

[59]  P. Sainsbury,et al.  Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. , 2007, International journal for quality in health care : journal of the International Society for Quality in Health Care.

[60]  Hsiu-Fang Hsieh,et al.  Three Approaches to Qualitative Content Analysis , 2005, Qualitative health research.

[61]  M. Law,et al.  Factors affecting family-centred service delivery for children with disabilities. , 2003, Child: care, health and development.

[62]  L. Jansen,et al.  Parental experience of participation in physical therapy for children with physical disabilities , 2003 .

[63]  Gillian King,et al.  Family-centered caregiving and well-being of parents of children with disabilities:linking process with outcome , 1999 .