Pilot Testing of a Co-adapted Group Programme for Parents/Carers of Children With Complex Neurodisability

The goal of this pilot feasibility study is to test a co-adapted community-based group programme ("Encompass") with parents/carers of children with complex neurodisability under 5 years of age in East London in the UK.

The main questions it aims to answer are:

* Is it feasible and acceptable to carry out this newly co-adapted programme with two groups of parents/carers of children with complex neurodisability under the age of 5?
* Is it feasible to carry out an evaluation of the above programme, which could then inform a protocol for larger scale evaluation?

The main activities for the parent/carer participants will include:

* Attending ten "Encompass" parent/carer groups
* Filling in questionnaires at the start and end of the groups
* Attending an interview with the researcher to discuss their experiences

The groups will be facilitated by a healthcare professional and a parent with lived experience. They will also be interviewed about their experiences after the groups have been completed.

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

The investigators 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. The investigators 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. The programme also provides opportunities for peer support and aims to empower parents/carers in navigating community health systems.

Eligibility Criteria:
Parents and carers:

Inclusion Criteria:

* Care for a child (\<5 years) with a complex neurodisability\*
* Have received a diagnosis for their child, which has been disclosed to them, even this is a diagnosis such as SWAN (Syndrome Without A Name)
* Reside in the boroughs of Newham or Tower Hamlets, East London
* ≥18 years of age.

Exclusion Criteria:

* Have a child with a developmental disability where there are no functional physical impairments as part of their complex needs. For example, children diagnosed with Autism Spectrum Disorder, Attention Deficit Hyperactivity Disorder, intellectual impairments will be excluded unless they have a functional physical impairment with a neurological cause too.
* Have a child with a progressive neurological condition such as Duchenne's Muscular Dystrophy.
* Have a child with a structural physical impairment not caused by a neurological event or neurological difficulties. For example, children born with a limb difference or a child with hearing loss.
* Do not have capacity to consent
* Do not meet the inclusion criteria as specified above
* There are no exclusions based on language, as interpreting/translating services will be offered.

Parent Facilitator:

Inclusion Criteria:

* Parents/carer of children with complex neurodisability who are identified through other services as potentially being able to facilitate a group as an 'expert parent'
* Prior experience in training or using participatory approaches - not essential

Exclusion Criteria:

* Inability to read and speak English
* Inability to commit to a 6-month period of work to the best of their knowledge

Healthcare Professional Facilitator:

Inclusion Criteria:

* Therapists or healthcare professionals who work with children with disabilities and who are open to learning with families about their children.
* Need to be registered with the Health and Care Professionals Council and should ideally have \> 5 years post-graduate experience working with a paediatric population
* Confident in working with children with complex neurodisability, such as cerebral palsy

Exclusion Criteria:

* Inability to read and speak English
* Inability to commit to a 6-month period of work to the best of their knowledge

Key Stakeholders:

Inclusion Criteria:

* Staff from the NHS that are either involved in the delivery or commissioning of community child health care services in Newham or Tower Hamlets.
* Examples include clinical managers, service leads or commissioners.

Exclusion Criteria:

None