Impact of “early intervention” parent workshops on outcomes for caregivers of children with neurodisabilities: a mixed-methods study

Miller, Laura; Imms, Christine; Cross, Andrea; Pozniak, Kinga; O’Connor, Bridget; Martens, Rachel; Cavalieros, Vicki; Babic, Rose; Novak‐Pavlic, Monika; Rodrigues, Myanca; Balram, A; Hughes, Debra; Ziviani, Jenny; Rosenbaum, Peter

doi:10.1080/09638288.2022.2143579

Cited by 13 publications

(11 citation statements)

References 34 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…This team discussion provided another opportunity to reflect on and discuss individual and shared experiences. KP revisited the transcripts and the codes from the interviews and surveys, comparing them with the comments from the GRIPP‐2 discussion (Miller et al, n.d. ).…”

Section: Methodsmentioning

confidence: 99%

“…ENVISAGE‐Families empowered parents' strengths‐based approaches to their child, family, disability, and parenting; provided tools to support connection, collaboration, and well‐being into the future; affirmed parents' expertise; and increased their confidence. The complete results of are reported elsewhere (Miller et al, n.d. ).…”

Section: Findings: Parent Engagement In Envisage‐familiesmentioning

confidence: 98%

See 1 more Smart Citation

Co‐development of the ENVISAGE‐Families programme for parents of children with disabilities: Reflections on a parent–researcher partnership

Pozniak

Cross

Babic

et al. 2022

Aus Occup Therapy J

View full text Add to dashboard Cite

Introduction:In childhood disability research, the involvement of families is essential for optimal outcomes for all participants. ENVISAGE (ENabling VISions And Growing Expectations)-Families is a programme comprising five online workshops for parents of children with neurodevelopmental disorders.The workshops aim to introduce parents to strengths-based perspectives on health and development. The research is based on an integrated Knowledge Translation (iKT) approach, in which knowledge users are involved throughout the research process. This article is co-authored by the ENVISAGE health service researchers (N = 9) and parent partners (N = 3) to describe the process through which we co-developed and implemented the workshops.Methods: Collaborative auto-ethnography methods, based on a combination of interviews, qualitative surveys, and discussions held to complete the Guidance for Reporting Involvement of Patients and Public-2 tool, were used to describe the co-design process, the benefits gained, and lessons learned. Findings: Parents (n = 118) were involved in developing and implementing the ENVISAGE workshops across the different phases, as partners, collaborators, or participants. Three parents were involved as investigators throughout. We identify seven key ingredients that we believe are necessary for a successful parent-researcher working relationship: (i) consistent communication; (ii) clear roles and expectations; (iii) onboarding and feedback; (iv) flexibility; (v) understanding; (vi) self-reflection; and (vii) funding. Conclusion: Patient and family engagement in research is a rapidly growing area of scholarship with new knowledge and tools added every year. As our team embarks on new collaborative studies, we incorporate this knowledge as well as the practical experience we gain from working together. K E Y W O R D S childhood disability, co-creation, co-development, family engagement in research, parents, participatory research

show abstract

Section: Methodsmentioning

confidence: 99%

Section: Findings: Parent Engagement In Envisage‐familiesmentioning

confidence: 98%

Co‐development of the ENVISAGE‐Families programme for parents of children with disabilities: Reflections on a parent–researcher partnership

Pozniak

Cross

Babic

et al. 2022

Aus Occup Therapy J

View full text Add to dashboard Cite

show abstract

“…Similar score in parental response could be because of the trainees teaching responsive care to caregivers [ 19 ]. Parents feel supported and confident when support is provided to them by professionals [ 29 ]. In responsive caregiving, parents talk to the staff about stress which then helps in reducing the stress [ 30 ].…”

Section: Discussionmentioning

confidence: 99%

Effect of play-based intervention on children’s mental status and caregiver involvement during hospitalization: findings from Pakistan

Bharuchi,

Rasheed

2024

BMC Pediatr

View full text Add to dashboard Cite

Background The nurturing care framework (NCF) encompasses responsive caregiving, health, nutrition, safety and security by parents and other caregivers. It improves health, development and wellbeing of children. A hospital environment can be detrimental to the developmental and emotional needs of children hence NCF can be applied to hospitalized children. Objective The objective was to determine if (i) play stimulation intervention mediated by non-specialist providers (caregivers) improves mental status of children who are hospitalized; (ii) to examine if difference varies between different providers and iii) if there is variation based on child age and criticalness of illness. Method A one-group pretest-posttest research was carried out using purposive sampling in a pediatric unit in Karachi, Pakistan, from November 2017 to December 2019. Children aged 3 months to 6 years were offered play stimulation by trainee psychologists. The outcome was measured through an observation tool, the Mental Status Examination Scale (MSE-S) developed for the study. Results A total of 524 sessions were delivered to 351 children. Significant mean difference was observed on MSE-S before and after the intervention when it was provided by trainees (9.95, CI = 8.11, 11.7), mothers (mean difference = 5.86, CI = 5.30, 6.42), fathers (mean difference = 5.86, CI = 4.48, 7.24) and non-specialist providers [caregivers (mean difference = 5.40, CI = 3.91, 6.89). Significant differences in mean was observed on MSE-S across different age groups and criticalness of illness. Conclusion It was concluded that play stimulation not only affects the behaviour of children but also varies when delivered by caregivers and trainees. Hence, interventions that involve parents are feasible.

show abstract

“…To address aspects of this implementation gap in providing appropriate family-centred care, there are a number of parent/carer group programmes being developed and tested in high-income countries globally which include 'Healthy Parent Carers' (17) (18), 'ENVISAGE (ENabling VISions and Growing Expectations)' (19) (20), 'Healthy Mothers, Healthy Families' (21), and 'Parenting Acceptance and Commitment Therapy (PACT)' (22). These programmes target families who have children with a variety of developmental disabilities, and each have slightly differing aims and objectives.…”

Section: Introductionmentioning

confidence: 99%

A co-adapted community-based participatory group programme for parents/carers of children with complex neurodisability (ENCOMPASS-2): A pilot and feasibility study protocol

Prest,

Harden,

Barnicot

et al. 2024

Preprint

View full text Add to dashboard Cite

Background Parents/carers of children with complex neurodisability continue to lack appropriate family-centred care. “Encompass” is a community-based group programme that was co-adapted from “Baby Ubuntu” in Uganda. It is an example of a ‘decolonised healthcare innovation’ as it is a low-cost solution from a low-income country for use in a resource-constrained UK National Health Service (NHS). Methods and analysis We will conduct a mixed methods pilot feasibility study to determine the feasibility and acceptability of delivering and evaluating “Encompass” with parents/carers of children under 5 years with complex neurodisability in the UK. We aim to recruit 20 parents/carers of children from two NHS trusts in England serving urban areas where there is high social deprivation and ethnic diversity. Recruited parents/carers will attend the 10-modular, participatory group programme over a 6-month period. Groups will be facilitated by a trained allied health professional and an ‘expert parent’ with lived experience. The primary outcomes of interest are the feasibility of delivering and evaluating the programme (recruitment, retention rates, acceptability as perceived by the parents/carers, facilitators and wider key stakeholders), intervention fidelity and participant adherence. Results will be collectively assessed against traffic light criteria. Pre-, post- and follow-up data collection questionnaires will include the Family Empowerment Scale (FES), the Power Ladder Question, the Parent Patient Activation Measure (P-PAM), Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS), EuroQoL-5D-5-level (EQ-5D-5L) and parent/carer greatest needs and goals questionnaire. Post-intervention semi-structured interviews will be conducted with parents/carers, facilitators and key stakeholders within the NHS. Discussion Providing family-centred support through a community-based participatory group programme is a potentially affordable and sustainable way for the NHS to improve a range of outcomes for parents/carers of children with complex neurodisability including knowledge, skills and confidence, wellbeing and quality of life of. The programme also provides opportunities for peer support and aims to empower parents/carers in navigating community health systems. Registration: The protocol is currently under PRS review on clinical trials.gov Ethical approval: Health Research Authority ref 23/EM/0213 Protocol V3.0, 6 March 2024

show abstract

Impact of “early intervention” parent workshops on outcomes for caregivers of children with neurodisabilities: a mixed-methods study

Cited by 13 publications

References 34 publications

Co‐development of the ENVISAGE‐Families programme for parents of children with disabilities: Reflections on a parent–researcher partnership

Co‐development of the ENVISAGE‐Families programme for parents of children with disabilities: Reflections on a parent–researcher partnership

Effect of play-based intervention on children’s mental status and caregiver involvement during hospitalization: findings from Pakistan

A co-adapted community-based participatory group programme for parents/carers of children with complex neurodisability (ENCOMPASS-2): A pilot and feasibility study protocol

Contact Info

Product

Resources

About