Healthy Parent Carers: Acceptability and practicability of online delivery and learning through implementation by delivery partner organisations

Abstract Background Parent carers of disabled children are at increased risk of physical and mental health problems. The Healthy Parent Carers (HPC) programme is a manualised peer‐led group‐based programme that aims to promote parent carer health and wellbeing. Previously, the programme had been delivered in person, with recruitment and delivery managed in a research context. This study explored implementation by two delivery partner organisations in the United Kingdom. Facilitator Training and Delivery Manuals were modified for online delivery using Zoom due to COVID‐19. Methods The study methodology utilised the Replicating Effective Programs framework. A series of stakeholder workshops informed the development of the Implementation Logic Model and an Implementation Package. After delivering the programme, delivery partner organisations and facilitators participated in a workshop to discuss experiences of implementing the programme. A wider group of stakeholders, including commissioners, Parent Carer Forums and charity organisations representatives and researchers subsequently met to consider the sustainability and potential barriers to delivering the programme outside the research context. Results This study explored implementation by two delivery partner organisations in the United Kingdom that were able to recruit facilitators, who we trained, and they recruited participants and delivered the programme to parent carers in different localities using Zoom. The co‐created Implementation Logic Model and Implementation Package were subsequently refined to enable the further roll‐out of the programme with other delivery partner organisations. Conclusions This study provides insight and understanding of how the HPC programme can be implemented sustainably outside of the research context. Further research will evaluate the effectiveness of the programme and refine the implementation processes. Patient and Public Contribution Parent carers, delivery partner organisation staff and service commissioners were consulted on the design, delivery and reporting of the research.


| INTRODUCTION
Parent carers of disabled children are at increased risk of physical and mental health problems. [1][2][3][4][5][6][7][8][9][10][11][12][13] They often experience greater challenges in maintaining good personal health, which has implications for their own wellbeing and their ability to care for their children. 14 Individual, family and environmental factors affect parent carers' health. Social disadvantage, gender, ethnicity, sexual orientation and/ or other personal factors may intersect to increase the health impacts of being a parent carer. 15 Population-based studies suggest that parent carer health problems persist and may worsen over time. 3 The COVID-19 pandemic exacerbated this problem, disproportionately affecting parent carers, with lockdowns, school closures and limited services leaving many families feeling abandoned. 16,17 Our consultations with parent carers suggest existing public health interventions are perceived as insensitive to the challenges that parent carers experience. Interventions to promote health equity are urgently needed. 18 The Healthy Parent Carers (HPC) programme was developed specifically to promote the health and wellbeing of parent carers. It aims to improve health and wellbeing by engagement in behaviours associated with better health-Connect, Learn, be Active, take Notice, Give, Eat well, Relax, Sleep (CLANGERS).
Intervention development and programme components and delivery strategies were described comprehensively in our previous papers. 19,20 The updated intervention logic model of the HPC programme outlines that parent carer engagement with health-promoting activities (CLANGERS) will foster resilience and improve health and wellbeing ( Figure 1). The programme facilitates behaviour change by providing opportunities for and prompting, social (peer) support, development of a shared social identity, sharing of experiences and the practice of health-related behaviours. This is achieved through (i) facilitated group-based activities and discussions, and (ii) providing health-related information and resources.
The HPC programme is delivered to groups of 6-12 parent carers, led by pairs of trained peer Lead and Assistant Facilitators, following procedures in the Facilitator Delivery Manual. Participants also receive written materials (printed/online), mirroring the content discussed in groups, to refer to and use outside of the group sessions. These include information about CLANGERS, links to videos and useful resources and action planning and selfmonitoring sheets.
Previously, researchers recruited facilitators, set up delivery sites, advertised for and screened potential participants, prepared resources and supported facilitators during delivery. However, outside of the research context, these tasks need to be done by licensed delivery partner organisations. The transition from academic to real-world settings is a common challenge for many evidencebased interventions. 24,25 The present study was, therefore, designed to establish and test a strategy to enable successful implementation by delivery partner organisations, which includes charities, social enterprises and voluntary groups.
Although the HPC programme has not yet undergone a definitive effectiveness trial, we wanted to explore barriers to implementation in nonacademic community settings, to ensure as early as possible that the intervention (if proven effective) would GARROOD ET AL.  26 Thus, following intervention development and a feasibility study, 19,27 we considered it critical to explore potentially feasible and sustainable implementation strategies. This is particularly important as reaching vulnerable individuals and those facing health inequalities presents numerous unique issues which are not well documented. 28 This paper reports on the first steps towards translating the HPC programme to delivery in real-world settings, preceding a pragmatic evaluation of effectiveness.
The study was designed before the Covid-19 pandemic. Social distancing mitigations in the pandemic meant that HPC could not be delivered in person, as initially designed. It was necessary to first adapt the programme (before implementation) so that training of facilitators and delivery of the programme could be done remotely using Zoom™. Details of the adaptations to online delivery are reported in Supporting Information: File 1. Therefore, this study serendipitously enabled our first evaluation of the acceptability and practicability of online delivery.
This implementation study had the following aims: 1. To identify feasible and acceptable strategies for wider implementation of HPC with delivery partner organisations from the perspective of the organisations, facilitators and participants.
2. To explore barriers and enablers for implementation of the programme by two delivery partner organisations who work with families with disabled children.
3. To systematically develop and refine the implementation strategy, including the Implementation Logic Model, Implementation Package and the terms for future licensing, to optimise the programme for delivery with nonacademic organisations.
Additionally, due to the need to move the facilitator training and the HPC programme online, we explored the acceptability and practicability of online delivery.
F I G U R E 1 Intervention logic model for the Healthy Parent Carers programme (v.2). 1. Colour-filled boxes indicate the components, techniques and processes that are specific to a group-based delivery, whereas the white-filled boxes indicate those present in the self-directed delivery (i.e., when participants use the written and online resources). Pattern-filled boxes indicate change processes that can be present in both group and self-directed delivery but are likely to be reinforced in a group setting. 2. Include the key/core behaviour change techniques (BCTs) to facilitate intrapersonal change processes (based on the BCT taxonomy v1 21 and to facilitate interpersonal change processes (based on the MAGI framework). 22 3. Include the key/core intra-and interpersonal change processes in behavioural determinants. The determinants are drawn from the Theoretical Domains Framework 23 and interpersonal change processes are drawn from the MAGI framework. 22 4. Include strategies to facilitate a conducive group environment (e.g., ice-breakers), group activities and discussions, and change techniques in groups. CLANGERS, Connect, Learn, be Active, take Notice, Give, Eat well, Relax, Sleep; MAGI, Mechanisms of Action in Group-Based Interventions.

| METHODS
The Replicating Effective Programs (REP) framework was developed specifically to provide a systematic process for implementing health interventions outside academic settings by community-based organisations. 29 The framework aims to help maintain fidelity while maximising the transferability of interventions when they are translated from academic to community settings. As this was our aim of exploring the delivery of HPC by community-based delivery partner organisations, the REP was considered a particularly relevant framework. The REP framework consists of four phases: preconditions, preimplementation, implementation and maintenance and evolution. This study focused on the first two stages outlined by the framework (Table 1) services and consultancy to parent carers, health professionals, social workers, local authorities and service providers in the childhood disability sector. Therefore, they were perceived as having the right reach, infrastructure and connections to implement the HPC programme.
We also continued to work in partnership with parent carers in our Family Faculty Patient and Public Involvement group who advise on our research. A series of meetings were coordinated to support the adaption of the programme for delivery online and reflect on the findings from implementation.
We established a Community Working Group (CWG). Delivery partner organisations selected key personnel to attend based on their knowledge of who would be able to support the implementation of the programme within their organisations. Two parent carer coinvestigators attended the meetings. Both had been involved in the programme and its development since the start and therefore could share their knowledge and expertise about the programme. One parent carer who had been a facilitator in the feasibility trial also took part. They were invited as they had also been previously employed by both of the delivery partner organisations as a facilitator. All coinvestigators were invited to attend the group meetings. Partnership building between intervention developers and delivery organisations. Identified barriers and processes of implementation.

|
Developed Implementation Logic Model.
Identify need Funder workshop-determine local need and appetite for commissioning HPC.
Identified interest from commissioners and possible challenges to programme delivery.

Draft implementation
Draft implementation processes-in collaboration with delivery organisations and key stakeholders.
Co-created a draft Implementation Package and Logic Model.

Phase 2-preimplementation
Optimising implementation Workshop 2-further refinement of the Implementation Package and Logic Model, including costs and any data that will need to be collected.
Implementation package reviewed. Contents developed to include additional key processes.
Pilot test Train facilitators to deliver programme. Pilot test implementation and delivery. Parent carers take part in two pilot groups (6 or 12 weeks in length), implemented by delivery organisations.
Piloted the Implementation Package.
Evaluate and reflect Workshop 3-review experiences of staff from delivery organisations and strategies undertaken during pilot testing. Workshop 4-discuss with potential future funders around sustainability and roll-out of the programme.
Identified key roles, processes and knowledge required to implement the programme. Revised the Implementation Logic Model. Developed a greater understanding of possible challenges and appetite for delivering the programme in different organisations.

| RESULTS
Across the series of four workshops, a range of personnel attended (  The total mean score for participant's index child on the AMC was 53, with a range of 37. Participants' demographic characteristics at baseline are summarised in Supporting Information Materials: Table S1. Figure 2 illustrates the study design and the flow of participants.

| HPC programme participants' feedback
Fifteen participants who completed the end-of-programme questionnaire reported hearing about the study via Parent Carer Forums (n = 5), social media/word of mouth (n = 6) or via delivery organisations (n = 3). All reported that the initial pre-meeting with the facilitator was helpful in making them feel comfortable to attend.
Most participants, 14/15 (93%), were happy to access an online group, were satisfied with how the programme was delivered and reported that they found it useful in helping them to improve their health and wellbeing. Sixty percent (9/15) of participants stated that they would not have been able to attend an in-person group. All respondents stated that they would recommend this programme and felt included and part of the group.
Ninety-three percent (14/15) of participants did not experience any issues with their internet connection during the programme.  As a result of this workshop, the Implementation Logic Model and Implementation Package were further refined.

| Coordination of the programme
Stakeholders discussed the specific tasks required to implement the programme, these included choosing dates, creating an advert, contacting participants and printing resources. It became clear that there was a need to distinguish between coordination and administration tasks. One delivery partner coordinator stated that they recognised the importance of having specific administrative support to successfully deliver the programme: 'Admin is a separate role and is essential for the successful delivery of HPC'.
It was apparent that providing the organisations with the manuals and introduction to the programme through the initial workshops and premeeting was insufficient to manage concerns and expectations around the implementation of the programme, independent of the study team.
One workshop participant stated that, 'There was a lot of anxiety from the facilitators about the newness of the programme and the coordinators felt unsure about their roles and what was required'.
Delivery partner staff also reported that they did not always feel able to make autonomous decisions, and noted the importance of 'feeling empowered to make decisions around budgets, paperwork, date, etc'.

| Knowledge of the programme
Delivery partner staff noted that in-depth knowledge was required to ensure successful implementation. For example, one manager commented that it was important to be able to 'Identify appropriate facilitators with the necessary skills and competencies', which required a level of knowledge about the programme to find the appropriate people.

| Governance
The importance of maintaining fidelity to the model and quality assurance was discussed by delivery partner staff, who expressed that it needed to be, 'ensured that the knowledge of the programme stays "in house"'. Participants also noted the need for governance processes to be clear; for example, one member of the delivery partner organisation noted that organisationally there needed to be a consideration around the 'quality assurance of delivery and training'.

| Strategic direction
The cost of delivering the programme on an ongoing basis and how it aligned to the strategic aims of their organisation was discussed by senior management, who explained the need to 'prioritise the opportunity and cost [of running the programme] and how to situate it within its strategic aims'.
Consideration was given to the longer-term sustainability of the programme, with a senior manager commenting, that '[they needed to continue] monitoring whether the programme is self-sustaining'.
They also noted that they needed to ensure the programme was sustainable from a resource and cost perspective: '[we need to] secure funding to support delivery and ensure it's over and above the minimum needed'.
3.6 | Workshop 4: Sustainability strategies for a wider rollout  Table 2).  This study not only identified barriers and facilitators to implementation but also used that information to develop an implementation package that addresses these issues. Similar studies show that identifying and documenting effective strategies can help to improve uptake 33 and increase the chances that the intervention is sustainable, scalable and adaptable to local service provision. It also highlights any specific local resources which may need to be priortised, and further provides a foundation from which the effectiveness of a scalable version of the programme can be tested. 34,35 The HPC programme was originally designed to be delivered in person. COVID-19 presented both challenges but also a serendipitous opportunity to develop an online delivery version of the programme. Every aspect of the study was adapted to be delivered online, including facilitator training, workshops, meetings, recruitment, consent meetings and data collection. This provided invaluable learning around how to deliver the programme online and thus has changed our strategies around implementation moving forward.
An online format appears both an acceptable and practicable form indicate that an online delivery format may be beneficial to parent carers to help increase their ability to attend sessions more easily. Nevertheless, we were mindful of potential safeguarding issues as the world moved online in the pandemic and took account of published recommendations on digital safeguarding principles. 36 The online format also increases the sustainability and scalability of the programme by reducing the costs involved in face-to-face delivery, such as travel and venue hire, and may provide access to parent carers in remote areas or who cannot get to an in-person group on a regular basis. However, further research will compare face-to-face and online delivery in terms of acceptability, engagement, and effectiveness. We are also considering how personal and contextual factors might influence engagement with the HPC programme and how we can ensure acceptability and equity, especially as online interventions may worsen inequality. 37 In line with the findings from our previous study, participants reported that taking part in the programme helped to improve their health and wellbeing, and felt included and part of the group, suggesting that the specific strategies we adopted enabled the online groups to build positive connections. 38 We believe that completing the programme modification work in collaboration with our Family Faculty public involvement group and giving attention to the group processes in the training and delivery manuals were key to maintaining these benefits.

| Strengths and limitations
The strength of this research was that it followed systematically the REP framework, which provided an iterative, collaborative process with extensive stakeholder engagement to revise implementation and delivery strategies and processes in real-world contexts. 29 The current study has some limitations. The small number of delivery partners and participants involved is not necessarily representative of all potential delivery partners and eligible participants. In addition, research staff were more involved than initially intended. However, this is consistent with other studies during phases 1 and 2 of the REP framework. 39 Further work to incrementally hand over responsibilities for training and delivery to delivery partner organisations is needed. In addition, future research across a larger number of and more diverse organisations, for example, local authorities and smaller delivery partner organisations, would allow us to continue to refine the implementation model for scalable rollout both nationally and internationally.

| Implications and optimal implementation strategies
There is a growing field of parent-carer-focused interventions that either aim to teach parents about their child's condition, offer practical parental support, including advice and self-care for their child's needs or selfempowerment to interact with professionals. 40,41 However, none of these interventions specifically target the health and wellbeing of all parent carers. The HPC Programme was designed specifically in response to this need and gap in current provision.
Online recruitment seemed to work well and therefore similar strategies could be employed in the future to advertise and recruit to the programme. Other strategies that could be considered in future implementation included the use of Eventbrite™ and a template poster, which can be adapted by organisations. Specific consideration may be required in terms of the information provided in the advert, and the screening information collected via Eventbrite™, as this could help to ensure that people are adequately informed about the commitments involved and the aims and objectives of the programme. This may help to ensure higher retention rates. Advertising through online Parent Carer Forums provided a quick and effective means of recruitment; therefore, this method should be considered again when running future programmes. However, consideration should also be given around how to ensure parent carers who are not connected to these forums can be reached.
Despite organisations and facilitators having access to detailed manuals to support implementation, there was a lot of intrinsic knowledge required to run the programme. Facilitators and implementation staff preferred a dual approach, where information was provided both verbally, through in-person meetings and through reading the manuals. Other comparable, REP-based studies, similarly suggest that implementation with an independent, experienced facilitator, alongside standalone manuals could be a useful model to help community-based organisations feel more confident to deliver, while they build up knowledge and further confidence to deliver the programme independently. 32 Offering this approach potentially creates a more efficient implementation strategy and optimises early engagement, while allowing closer monitoring of the quality and fidelity of the programme. We will explore this as an option in the future evaluation of the programme.