Investigating the effect of providing monetary incentives to participants on completion rates of referred co-respondents: An embedded randomized controlled trial.

Background: The use of a second informant (co-respondent) is a common method of identifying potential bias in outcome data (e.g., parent-report child outcomes). There is, however, limited evidence regarding methods of increasing response rates from co-respondents. The use of financial incentives is associated with higher levels of engagement and follow-up data collection in online surveys. This study investigated whether financial incentives paid to index participants in an online trial of a parenting-focused intervention, would lead to higher levels of co-respondent data collection. Methods: A study within a trial (SWAT) using a parallel group RCT design. Participants in the host study (an RCT of an online intervention) were randomised into one of two SWAT arms: received/did not receive a £15 voucher when referred co-respondent completed baseline measures. Primary outcome was completion (No/Yes) of Spence Children's Anxiety Scale (SCAS or SCAS-Pre) at baseline. Additional analysis explored impact of incentives on data quality. Results: Intention to treat analysis of 899 parents (183 co-respondents) in the no-incentive arm, and 911 parents (199 co-respondents) in incentive arm. Nomination of co-respondents was similar between incentive arms. The RR for the incentive arm compared to the no incentive arm was 1.13 (95% CI: 0.91 to 1.41, p = 0.264) indicating that incentives did not impact completion of outcomes by consented co-respondents. There were no indications of different data quality between arms. Discussion: The finding that payment of financial incentives to index participant does not lead to greater levels of co-respondent outcome completion suggests that careful consideration should be made before allocating resources in this way in future trials. Trial registration: The host study was registered at Study Record | ClinicalTrials.gov and the SWAT study was registered in the SWAT Store | The Northern Ireland Network for Trials Methodology Research (qub.ac.uk): SWAT number 143: Filetoupload,1099612,en.pdf (qub.ac.uk).

Co-producing principles to guide health research: an illustrative case study from an eating disorder research clinic.

BACKGROUND: There is significant value in co-produced health research, however power-imbalances within research teams can pose a barrier to people with lived experience of an illness determining the direction of research in that area. This is especially true in eating disorder research, where the inclusion of co-production approaches lags other research areas. Appealing to principles or values can serve to ground collaborative working. Despite this, there has not been any prior attempt to co-produce principles to guide the work of a research group and serve as a basis for developing future projects. METHODS: The aim of this piece of work was to co-produce a set of principles to guide the conduct of research within our lived experience led research clinic, and to offer an illustrative case for the value of this as a novel co-production methodology. A lived experience panel were recruited to our eating disorder research group. Through an iterative series of workshops with the members of our research clinic (composed of a lived experience panel, clinicians, and researchers) we developed a set of principles which we agreed were important in ensuring both the direction of our research, and the way in which we wanted to work together. RESULTS: Six key principles were developed using this process. They were that research should aim to be: 1) real world-offering a clear and concrete benefit to people with eating disorders, 2) tailored-suitable for marginalised groups and people with atypical diagnoses, 3) hopeful-ensuring that hope for recovery was centred in treatment, 4) experiential-privileging the 'voice' of people with eating disorders, 5) broad-encompassing non-standard therapeutic treatments and 6) democratic-co-produced by people with lived experience of eating disorders. CONCLUSIONS: We reflect on some of the positives as well as limitations of the process, highlighting the importance of adequate funding for longer-term co-production approaches to be taken, and issues around ensuring representation of minority groups. We hope that other health research groups will see the value in co-producing principles to guide research in their own fields, and will adapt, develop, and refine this novel methodology.

It important that when researchers are trying to understand illnesses they do this together with people who have experienced them. This can be difficult, because researchers often take over­even if everyone is meant to be working as a team. We are a group of people trying to understand eating disorders and help people who have them get better. In our group there are some people that have experienced an eating disorder, health workers and researchers.We thought it might be helpful if we could start by working out what things were most important to us as a group, and then try to stick by them. We talked a lot together to come up with a list of principles.The six principles we thought were the most important were that research should make a difference to people's lives, see people as individuals, be hopeful, make sure that people have a voice, look at things that aren't traditional therapies, and always work together as equals.There are some issues with what we did; we found it hard to get a good mix of people in our group, and we were lucky in having enough money to pay people to do what we wanted to do, which is not always true. Despite this, we still hope that other teams might look at what we have done, and see if they could build on it, or change it, so it would work for them.

Psychiatric in-patients who are parents: what interventions are tailored to their needs and how do they experience care? A systematic review and data synthesis.

BACKGROUND: Little is known about the experiences of parents who are in receipt of in-patient psychiatric care or about what interventions are employed to support them in their parenting role. AIMS: The objective of the current study is to review two complementary areas of research: (a) research examining interventions developed to support the parent-child relationship within these settings; and (b) research focused on the experience of parents in in-patient settings. METHOD: For studies reporting on parents' experience, qualitative accounts of past or present psychiatric in-patients (child aged 1-18 years) were included. For intervention studies, the intervention had to focus on supporting the parenting role and/or the parent-child dyad of parents (child aged 1-18 years) in current receipt of in-patient care. Four bibliographic databases (PubMed, SCOPOS, Web of Science and PsychINFO) were searched for relevant published and unpublished literature from 1 January 1980 to 26 July 2022. Intervention studies were appraised using the Mixed Methods Appraisal Tool. Qualitative papers were assessed using the Critical Appraisal Skills Programme tool. Data were extracted using tools designed for the study. Qualitative data were synthesised using thematic analysis. The protocol was registered with the International Prospective Register of Systematic Reviews (reference CRD42022309065). RESULTS: Twenty-four papers (eight intervention studies and 16 studies examining parent experience) were included in the review. In-patient parents commonly reported hospital admission as having a negative impact on their parenting. Very few robust reports of interventions designed to support parents in receipt of psychiatric in-patient care were found. CONCLUSIONS: Despite the identified need for support by parents who are receiving in-patient care, there is currently no intervention of this nature running in the UK health service.

Investigating the effect of providing monetary incentives to participants on completion rates of referred co-respondents: An embedded randomized controlled trial. Study within a trial (SWAT) protocol.

Background: Parent-report questionnaires are a common method of generating data on child outcomes in mental health studies. A second report from another person who knows the child (co-respondent) is implemented to reduce bias and increase objectivity. The success of this approach is dependent on the engagement of co-respondents, which can be difficult. Financial incentives are used to increase data return in clinical trials, and to promote referral rates in online marketing. This protocol describes the use of an embedded randomised controlled trial (RCT) to investigate the effect of financial incentives on rates of co-respondent data completion. In the host RCT (of an online intervention designed to reduce the impact of a parent's anxiety on their child) index participants (i.e. parents) are asked to invite a co-respondent to complete measures on the index child. This study will test the hypothesis that providing monetary incentives to index participants will increase the outcome measure completion rate of co-respondents. Methods: Embedded RCT of two parallel groups. Participants in the intervention arm will be sent a £10 voucher if their chosen co-respondent completes online baseline measures. Participants in the control arm will not be offered payment regardless of their chosen co-respondent's behaviour. 1754 participants will take part. Analysis will compare co-respondent outcome measure completion rates between the two arms at baseline and follow-up. Conclusion: Findings from this study will provide evidence on the impact of offering payment to index participants on return rates of co-respondent data. This will inform resource allocation within future clinical trials.

Effectiveness of a Web-Based Intervention to Prevent Anxiety in the Children of Parents With Anxiety: Protocol for a Randomized Controlled Trial.

BACKGROUND: Anxiety is the most common childhood mental health condition and is associated with impaired child outcomes, including increased risk of mental health difficulties in adulthood. Anxiety runs in families: when a parent has anxiety, their child has a 50% higher chance of developing it themselves. Environmental factors are predominant in the intergenerational transmission of anxiety and, of these, parenting processes play a major role. Interventions that target parents to support them to limit the impact of any anxiogenic parenting behaviors are associated with reduced anxiety in their children. A brief UK-based group intervention delivered to parents within the UK National Health Service led to a 16% reduction in children meeting the criteria for an anxiety disorder. However, this intervention is not widely accessible. To widen access, a 9-module web-based version of this intervention has been developed. This course comprises psychoeducation and home practice delivered through text, video, animations, and practice tasks. OBJECTIVE: This study seeks to evaluate the feasibility of delivering this web-based intervention and assess its effectiveness in reducing child anxiety symptoms. METHODS:  This is the protocol for a randomized controlled trial (RCT) of a community sample of 1754 parents with self-identified high levels of anxiety with a child aged 2-11 years. Parents in the intervention arm will receive access to the web-based course, which they undertake at a self-determined rate. The control arm receives no intervention. Follow-up data collection is at months 6 and months 9-21. Intention-to-treat analysis will be conducted on outcomes including child anxiety, child mental health symptoms, and well-being; parental anxiety and well-being; and parenting behaviors. RESULTS: Funding was received in April 2020, and recruitment started in February 2021 and is projected to end in October 2022. A total of 1350 participants have been recruited as of May 2022. CONCLUSIONS: The results of this RCT will provide evidence on the utility of a web-based course in preventing intergenerational transmission of anxiety and increase the understanding of familial anxiety. TRIAL REGISTRATION: ClinicalTrials.gov NCT04755933; https://clinicaltrials.gov/ct2/show/NCT04755933. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/40707.