Title: Optimising Parent Engagement with Early Intervention Physical Therapy for Their Infants with Emerging Cerebral Palsy
Funder: Health Education England

Abstract: Background Cerebral Palsy (CP) is a lifelong neurological sensorimotor disability that affects 2/1000 births and emerges in early infancy. Studies show that infants with emerging CP could benefit from early intervention therapy(9-11). Yet, clinical research and implementation of early intervention programmes is complex and findings are variable(12-14). Parental involvement is one key factor in explaining difficulties of early intervention implementation(15-17). There are multiple challenges facing parents with an infant with emerging CP that can interfere with their engagement in early intervention physical therapy(37-42). However, little is known about how parental involvement might be supported and optimised in early intervention(18-20); particularly within the NHS. Therefore deeper exploration is required. This study is designed in three phases to meet its overarching aim, which is: To develop a theory and practical guidelines on how best to engage parents of infants with emerging cerebral palsy in early intervention ( Objectives: To understand parental perceptions of what enables and constrains their engagement(Phase 1) To explore how parental engagement is enabled or constrained within therapy sessions(Phase 2) To identify strategies and collaborative approaches that parents and therapists use to optimise parental engagement(Phase 2) To explore how the parent-therapist partnership over time affects engagement(Phase 2) To disseminate findings and co-design, with parents and professionals, the outline of an early intervention therapeutic approach that is relevant and practical for NHS services(Phase 3) Methods This study will use participatory qualitative methods, specifically constructivist grounded theory, with emphasis for action(58-61). Grounded theory will provide a rigorous methodology to meet the aim. It is commonly used to explain complex social phenomena, whilst remaining true to original accounts, i.e. the parent voice, throughout the research process(59-62). The study will be multisite (three pre-identified sites) in order to provide a scope of parent perspectives from different service providers. The design has three phases. Sampling: will be theoretical, whereby the simultaneous data collection and analysis will inform participant selection as the study progresses to expand, refine and exhaust emergent concepts until data saturation(72). Participants: will be selected from the three sites for maximal variation of family characteristics (e.g. family make-up, parent age). Phase 1: will meet the first objective. In-depth, exploratory interviews will be performed with parents. Interviews will be audio-recorded, with field notes and recordings transcribed verbatim immediately afterwards(59). Data analysis will be cyclical and performed simultaneously with data collection to inform the development of the topic guide and further sampling. Phase 2: will involve three case studies of therapy sessions captured by video at two time points over six months, with follow-up parent and therapist interviews(66). These interviews will use fragments' of selected video, to elicit a deeper understanding of participant's perspectives on interactions. Telephone interviews will be performed with parents six months later for further insight into perceptions of their engagement in therapy over time. This phase aligns with objectives 2-4. Phase 3: previous and new participants (including expert therapists) will be invited to attend a co-design workshop where findings from phases 1 and 2 will be presented(77). This workshop will use participants' experience provide practical implementation of findings(61). Data analysis: will begin with data immersion, followed by initial open coding. An iterative cycle will follow whereby findings will be undergo constant comparative analysis, to drive formation of focused and axial codes for paradigm modelling. Trustworthiness: proposed strategies will manage bias including: member checking, reflective diary, supervision, triangulation with data collection methods and use of literature. Outcome and ImpactThe co-design phase will apply findings to outline recommendations on a family-centred approach for early intervention relevant to NHS paediatric physical therapy services.

Lay abstract: Background: Being born early (pre-term) or having other problems at birth can cause injury to a baby's brain and lead to development of a disability, called cerebral palsy. Cerebral palsy is a life-long condition that affects movement, sensation and learning. It can initially be difficult to diagnose cerebral palsy because symptoms can take some time to become obvious. However, there are tests that health professionals can carry out to help identify those babies most at risk of developing cerebral palsy. For these babies, starting physical therapy as early as possible can provide the best conditions for their brain's ability to adapt to the injury and help them to fulfil their potential. Need for research: Early physical therapy relies on therapists and parents working closely together. The best outcomes are achieved when parents are able to incorporate therapy' into everyday routine and create stimulating environments for their babies. However, this can be a stressful and difficult time for parents for multiple reasons. For example, they are often adjusting to their baby having a potential life-long disability. Finding the best approach in these circumstances is challenging. Unfortunately some therapy approaches may cause parents more stress, which could result in disengagement with therapy. Therapists need to understand the challenges and opportunities faced by parents and take these into account when delivering therapy. Traditional approaches may see the therapist as teacher' and the parent as student'. This is in contrast to coaching methods where parents are seen as equal partners and bring their understanding of their baby and home life to help develop solutions. There is little research specifically asking parents what they feel encourages or discourages their involvement with physical therapy for their baby soon after birth. With limited NHS resources it is essential to maximise the benefit of early therapy for high-risk babies and their families. Finding the best ways to empower parents to be equal partners in therapy will help achieve this. Study aims This study aims to understand issues around, and provide practical recommendations on how best to engage parents in early physical therapy for babies at high risk of developing cerebral palsy. This will be achieved by: Exploring through detailed interviews (up to 20), what parents think helps or hinders their involvement in their baby's physical therapy. Reviewing how parents take part in therapy sessions and how therapists can work with parents to support this over time. Three parent and therapist pairs will be followed over a 6 month period, with video recording of therapy sessions at two time points. After each recorded session, interviews with parents and therapists will be undertaken, using video clips to prompt discussion. Telephone interviews will be conducted 6 months after the final session. Using the findings to design, with parents and therapists, recommendations of an approach that offers the best level of involvement from families in early physical therapy.Public Patient Involvement: Parent participation is central to this project. The project will be further supported by a local established Public and Patient Involvement (PPI) advisory group, which will consist of parents with experience of early intervention NHS services. They will guide the project development in a number of ways, advising on; project design, participant information and interpretation of findings. Regular communication will be maintained with this group both remotely (using email and Skype) and with additional group meetings at important points in the project. Dissemination: Sharing of findings: Regular updates on project progress will be shared with specific audiences for information and feedback. These will include project participants, the PPI group and the charities, Action CP and Bliss. In addition, a dissemination strategy has been created to enable effective sharing of project findings. This will include doing joint presentations with parent participants at key conferences. Parent participants will also be asked to help co-design content for relevant social media channels. Supporting charities will be invited to share findings with their specific audiences. Finally, findings will be circulated within specialist clinical networks, which will involve publication in various journals. Overall, this study could shape the development and delivery of early physical therapy for babies at high risk of cerebral palsy within the NHS.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: NEUROLOGICAL