Ali, S

Allaham, S

Batura, N

Bou Karim, Y

Demel, I-C

Edwards, C

Gilmour, J

Hayward, A

Heys, M

Irish, C

Kuper, H

Lakhanpaul, M

Llewellyn, C

Manikam, L

Morris, C

Oulton, K

Tann, C

Webb Martin, K

Wilson, E

Zakieh, O

English

UCL Discovery

Health Expectations. 2021;00:1–3.    |  1wileyonlinelibrary.com/journal/hex Received: 3 October 2020  |  Revised: 16 December 2020  |  Accepted: 26 December 2020DOI: 10.1111/hex.13194  L E T T E R  T O  T H E  E D I T O ROnline community engagement in response to COVID-19 pandemicCommunity participatory research is a method of active engage-ment between community members to develop interventions that catalyse social change and improve health outcomes.1 Increasingly, particularly in low-middle-income countries (LMICs), participatory research is used to co-develop low-cost community interventions. UK health policy and providers are also placing increasing emphasis on strengthening community services to equitably optimize health outcomes. South-to-north translation of community-based partici-patory interventions provides enormous potential to address these aims. In this article, we provide two examples of interventions which have been successfully implemented in LMICs2-4 and are currently undergoing adaptation and testing in the UK, driven by the emphasis of NHS policy shifting towards community strengthening.5 The first is community mobilization through participatory learning and action (PLA) cycles with women's groups and the second community-based parent group programme for children with complex neurodisability (Ubuntu).6,7 Here we describe how these programmes are being fur-ther adapted to run partially or fully online in response to COVID-19, and lessons can be learnt from these two examples, which have accelerated digital innovation in the delivery of health services to enable non-contact approaches.Women's groups PLA cycle is a WHO-recommended interven-tion to produce sustained improvements in maternal and newborn outcomes in rural LMICs. PLA cycles are iterative processes led by community facilitators (CFs) guiding participants through four-stage cycles of identifying and prioritizing contextual health issues, design-ing strategies to address these issues and evaluating post-implemen-tation. The Nurture Early for Optimal Nutrition (NEON) programme9 aims to co-adapt PLA from LMIC to theUK to improve infant feeding, care and dental hygiene practices for South Asian infants <2 years in East London.Ubuntu family of programmes provides community-based par-ent/carer programmes using participatory approaches. These pro-grammes were developed in LMIC to support carers of children at risk or with a diagnosis of complex neurodisability. These are, for cerebral palsy: the Getting to Know Cerebral Palsy (G2KCP) pro-gramme, for young children with developmental disability: the ABAaNA Early Intervention Programme (ABaANA: Uganda/Rwanda) and for children with congenital Zika syndrome (Juntos: Brazil).10 This approach is being adapted in the UK for families of children with complex neurodisability, such as cerebral palsy to address an ex-pressed, unmet need by parents for such an intervention.2Due to COVID-19, the UK government enforced isolation mea-sures, including social distancing.11 This affected community en-gagement studies that relied on face-to-face meetings such as NEON and community groups for complex neurodisability. Despite evi-dence of increasing health uptake and engagement, little is known about the feasibility of undertaking online community engagement and research, especially during a pandemic.12Salmons (2016) introduced an e-research framework that fa-cilitates a holistic approach to undertake community engagement and qualitative research online.13 Furthermore, social media plat-forms have been found to be valid tools to engage with commu-nities during times of crises.13-15 Consequently, the NEON team decided to adapt the intervention such that community engage-ment, delivery and evaluation occurred virtually, utilizing the soft-ware Zoom. CFs received a robust group and 1:1 training from the NEON team on how to use Zoom, to facilitate the NEON interven-tion meetings. Despite the varying digital literacy, all the CFs suc-cessfully used the online platform for the meetings. Similarly, the community parent/carer group intervention team have adapted their qualitative research methodology and workshops to online platforms.Reflecting on our experiences, online engagement has sev-eral benefits over face-to-face; (a) CFs do not have to commute to meetings nor bear travel costs, and (b) participants have flexibility in terms of meeting dates and times. These factors helped in the con-duct of meetings during holiday times and encouraged participation by reducing mobility barriers for physically disabled individuals and carers of infants. Meetings could also be recorded with the partic-ipants’ permission and accessed later to reflect on specific points and/or for those who missed meetings.Since COVID-19, there has been an increase in anxiety, de-pression and other mental health morbidity, which may have im-pacted on CF’s proactiveness to participate online. Participation promotion techniques, for example inviting participants by name to speak in turn, splitting the group into smaller discussion groups, This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.© 2021 The Authors. Health Expectations published by John Wiley & Sons Ltd.Dr Logan Manikam and Shereen Allaham are joint first authors Prof Monica Lakhanpaul and Dr Michelle Heys are joint senior authors 2  |     LETTER TO THE EDITORwere used to mitigate these issues. We recognize that community engagement is difficult during crises due to changing lifestyles and commitments with some CFs volunteering to deliver necessi-ties in their community. Whilst not observed, participants may be reluctant to attend online meetings if they feel they lack privacy in their home setting. Whilst not always practically possible, we encouraged CFs to undertake meetings in a private room in their house. Other limitations and/or risks of virtual meetings include: (a) loss of body language and non-verbal cues, particularly if in-dividuals switch off their cameras and (b) risk worsening health inequities by reliance on digital methods as the highest risk, hard-est to reach populations are likely those who experience greater digital poverty.16After conducting online parent/carer workshops to gather feedback around the COVID-19 experience, the G2KCP project team is undertaking qualitative focus group discussions (FGD) and semi-structured interviews online. The team have incorporated solutions on how to conduct online qualitative research from Tuttas et al (2014) such as reducing FGDs sizes so that they are more manageable online.17 In addition, they are exploring the fea-sibility of digital implementation of the programme. Collaborators in Rwanda and Uganda are similarly currently exploring the dig-ital adaptation of the ABaANA programme. To advance patient and public involvement and community engagement, an online Facebook group is being set up as a virtual support group for East London parents during the pandemic. Furthermore, this virtual community can act as a space to disseminate information and pro-mote shared learning.NEON and community parent groups for neurodisability rep-resent two exemplar community participatory research projects adapting to COVID-19 by implementing online research, meetings and intervention implementation as a successful alternative to face-to-face meetings. There may still be inevitable digital divide in the community, and evaluation of these is planned and required to as-certain impact on equity and efficacy. We hope that many gener-alizable lessons will be learned from our experiences that may be applied to the conduct of participatory and qualitative research and to the implementation of community-based interventions in the UK and beyond.KE Y WORDSchildren, community engagement, community-based intervention, infant, online interventionsCONFLIC T OF INTERE S TSNo conflict of interests to declare.FUNDING INFORMATIONDr Oulton is a National Institute for Health Research (NIHR) Senior Nurse and Midwife Research Leader. The views expressed in this article are those of the author(s) and not necessarily those of the NIHR, or the Department of Health and Social CareDATA SHARING AND AVAIL ABILIT Y S TATEMENTThe data of this study are available from the corresponding author upon reasonable request.AUTHOR CONTRIBUTIONSML, LM, MH, NB, CL, AH and SA conceived the original concept of the study and designed the research methodology. SA carried out the ID meetings, workshops, co-development of the intervention toolkit and wrote the paper. LM, ML, SA, NB, CL, AH, KO, CM, CT, HK, YBK, EW, JG, KWM, CI and CE validated the study and revised the manuscript critically for important intellectual content. OZ and ICD were involved in drafting materials for the NEON meetings and workshops of the Intervention Development Phase. OZ, ICD and SaA contributed to the manuscript writing, edited the final manu-script and prepared it for submission. LM and SA had primary re-sponsibility for the final content. All authors read and contributed to reviewing the study data, the designing of the manuscript and the approval of the final manuscript.Logan Manikam1,2Shereen Allaham1,2Omar Zakieh2,3Yasmin Bou Karim2,5Isabel-Cathérine Demel2,4Sayeeda Ali5Emma Wilson5Kate Oulton6Christopher Morris7Cally Tann8Hannah Kuper9Neha Batura10Clare Llewellyn11Andrew Hayward1Jenny Gilmour12Kelley Webb Martin13Carol Irish13Chanel Edwards13Monica Lakhanpaul5,14Michelle Heys5,151Department of Epidemiology and Public Health, University College London Institute of Epidemiology and Health Care, London, UK2Aceso Global Health Consultants Limited, London, UK3Department of Medicine, Imperial College London, London, UK4Department of Life Sciences & Medicine, King’s College London GKT School of Medical Education, London, UK5Population, Policy and Practice, UCL Great Ormond Street Institute of Child Health, London, UK6Great Ormond Street Hospital, London, UK7University of Exeter Medical School, University of Exeter, Exeter, UK     |  3LETTER TO THE EDITOR8Department of Infectious Disease Epidemiology, London School of Hygiene & Tropical Medicine, London, UKEmail: cally.tann@lshtm.ac.uk9International Centre for Evidence in Disability, London School of Hygiene & Tropical Medicine, London, UK10Institute for Global Health, University College London, London, UK11Department of Behavioural Sciences & Health, UCL IEHC, London, UK12Tower Hamlets GP Care Group, Mile End Hospital, London, UK13Children’s Health 0-19 Service, London Borough of Newham, London, UK14Whittington Health NHS Trust, London, UK15Specialist Children and Young People’s Services, East London NHS Foundation Trust, London, UKCorrespondenceLogan Manikam, Department of Epidemiology and Public Health, University College London Institute of Epidemiology and Health Care, 1-19 Torrington Place, London WC1E 7HB, UK.Email: Logan.manikam.10@ucl.ac.ukORCIDLogan Manikam  https://orcid.org/0000-0001-5288-3325 Shereen Allaham  https://orcid.org/0000-0003-0275-3228 Kate Oulton  https://orcid.org/0000-0002-5778-3849 Christopher Morris  https://orcid.org/0000-0002-9916-507X Cally Tann  https://orcid.org/0000-0003-0131-4952 Hannah Kuper  https://orcid.org/0000-0002-8952-0023 Neha Batura  https://orcid.org/0000-0002-8175-8125 Clare Llewellyn  https://orcid.org/0000-0002-0066-2827 Andrew Hayward  https://orcid.org/0000-0002-3549-6232 Monica Lakhanpaul  https://orcid.org/0000-0002-9855-2043 Michelle Heys  https://orcid.org/0000-0002-1458-505X R E FE R E N C E S 1. 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Evaluating the impact of a community-based parent training programme for children with cerebral palsy in Ghana. PLoS One. 2018;13(9):e0202096 7. Heys M, Gram L, Wade A, et al. Long-term impact of communi-ty-based participatory women's groups on child and maternal mor-tality and child disability: follow-up of a cluster randomised trial in rural Nepal. BMJ Glob Health. 2018;3(6):e001024. 8. WHO. WHO recommendation on facilitated participatory learn-ing and action cycles with women's groups during pregnancy: The WHO Reproductive Health Library 2018. Available from: https://extra net.who.int/rhl/topic s/impro ving-healt h-syste m-perfo rmanc e/imple menta tion-strat egies/ who-recom menda tion-facil itate d-parti cipat ory-learn ing-and-actio n-cycle s-women s-group s-during 9. Nurture Early for Optimal Nutrition (NEON) study: Aceso Global Health Consultants Ltd 2019. Available at: https://www.aceso ghc.com/neon 10. Nampijja M, Webb E, Nanyunja C, et al. Randomised controlled pilot feasibility trial of an early intervention programme for young infants with neurodevelopmental impairment in Uganda: a study protocol. BMJ open. 2019;9(10):e032705. 11. UK Government. Department of Health and Social Care, Coronavirus action plan. [Available at: https://www.gov.uk/gover nment/ publi catio ns/coron aviru s-actio n-plan] 12. Lupton D (ed). Doing fieldwork in a pandemic (crowd-sourced document); 2020. [Available at: https://docs.google.com/docu-ment/d/1clGjGABB2h2qbduTgfqribHmog9B6P0NvMgVuiHZCl8/edit?ts=5e88ae0a#] 13. Salmons J. Doing qualitative research online. London, England: SAGE; 2016. 14. Marcolino M, Oliveira J, D'Agostino M, Ribeiro A, Alkmim M, Novillo-Ortiz D. The impact of mHealth interventions: systematic review of systematic reviews. JMIR mHealth uHealth. 2018;6(1):23. 15. Marston HR, Musselwhite C, Hadley RA. COVID-19 vs Social isola-tion: The impact technology can have on communities, social con-nections and citizens. The British Society of Gerontology; 2020. 16. Timmermans S, Kaufman R. Technologies and health inequities. Ann Rev Sociol. 2020;46(1):583-602. 17. Tuttas CA. Lessons learned using web conference technology for online focus group interviews. Qual Health Res. 2014;25(1):122-133.How to cite this article: Manikam L, Allaham S, Zakieh O, et al. Online community engagement in response to COVID-19 pandemic. Health Expect. 2021;00:1–3.  https://doi.org/10.1111/hex.13194

Online community engagement in response to COVID-19 pandemic

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