Research knowledge transfer to improve the care and support of adolescents with sickle cell disease in Ghana

Abstract Introduction Effective transfer of research findings to key knowledge users, particularly in low‐ and middle‐income countries, is not always achieved, despite being a shared priority among researchers, funders, healthcare and community stakeholders and decision‐makers. A constructivist grounded theory study conducted in 2015–2019 in Ghana that explored sickle cell‐related fatigue in adolescence resulted in numerous implications for practice and policy. Peer‐reviewed funding was obtained to support disseminating these findings to relevant stakeholders. Methods Key steps in implementing this study dissemination project included: (1) identifying and attracting target stakeholders from healthcare and community organizations; (2) tailoring tools for communication of research findings for the stakeholder groups and (3) designing interactive workshops to facilitate knowledge sharing and uptake. Finding Despite the COVID‐19 pandemic, 50 healthcare and community stakeholders participated in the dissemination workshops. The dissemination activities contributed new layers of understanding to the original research findings through discussions. Through the workshops, participants identified culturally valuable and actionable recommendations that they could take forward to improve care and support for young people with sickle cell disease in Ghana. A follow‐up 6 months post the workshops indicated some positive knowledge usage and benefits. Conclusion This dissemination project provided a unique opportunity for researchers and stakeholders to share in the interpretation of research findings and to strategically plan recommendations to improve SCD‐focused care and support for young people in Ghana. Further research dissemination should continue to be grounded in locally generated knowledge, include systematic, long‐term evaluation of dissemination outcomes and be adequately financed. Patient and Public Contribution Public involvement in this study was critical to the research dissemination project. The Sickle Cell Association of Ghana (Kumasi chapter) actively supported the project's development, organization and facilitation. Parent members of the Association, the Association's executive members and volunteers, and the health professionals involved in sickle cell care at the Komfo Anokye Teaching Hospital participated in the project workshops. They contributed to the knowledge transfer and uptake.


| INTRODUCTION
Evidence-based policy and practice can lead to improved health and development outcomes, more efficient use of limited resources, and greater accountability. 1 However, a significant gap exists between health research and policy and practice, despite the increasing demand to close this 'know-do' gap through knowledge transfer and exchange. 1,2 The gap is larger in low-and middle-income countries (LMICs), given the inherent challenges related to research equity globally. 2 Although new knowledge, when well used, has the potential to save lives and improve welfare in LMICs, 3

health research capacity
in LMICs is mainly insufficient. It tends to be funded by donors from high-income countries (HICs) who typically require HIC researchers to lead research projects. 4 Research utilization does not begin until systematic communication of new and existing knowledge occurs. 7 Conventional research dissemination approaches such as journal publications are increasingly under critique for reinforcing passive, top-down relationships among producers and users of knowledge and assuming that simple receipt of relevant information will lead to change in practice. 8 Strategies for maximizing the dissemination of research findings include (1) use of theoretically guided principles to communicate findings broadly, proactively and interactively 7 using a variety of information-sharing techniques; (2) providing knowledge users with opportunities to discuss and interpret research findings within their local context 9 and (3) addressing different information needs and social contexts of all knowledge users who need to collaborate to implement research findings. 10,11 In addition, multifaceted interactive educational interventions are identified as particularly effective dissemination strategies. 12 This article describes a project that used the above strategies to disseminate pertinent sickle cell disease (SCD)-focused research findings to healthcare and community stakeholders. SCD is the most common genetic blood disorder worldwide, predominant in sub-Saharan Africa, where an estimated 1000 babies are born with the condition daily. 13 It is a chronic debilitating condition commonly characterized by chronic anaemia and fatigue and unpredictable and episodic acute painful episodes or crises that cause cumulative damage to multiple organ systems. In Africa, 50%-90% of children born with SCD die prematurely before their fifth birthday due to delayed diagnosis and suboptimal management of SCD and their related complications, while those who survive become vulnerable to the exacerbations of the condition and its implications. 13,14 Indeed, it is estimated that SCD contributes 9% of the mortality rate in children under 5 years in the West African subregion and 16% in some West African countries, including Ghana. 15 However, studies exploring the impact of providing evidence-based SCD education to key stakeholders/knowledge users in Africa are absent. Specific strategies for disseminating SCDfocused research findings to broader and more varied audiences have not yet been reported in the literature. The identification of stakeholders, development of content and format for this dissemination project were guided by three key components related to effective knowledge transfer: cognitive (i.e., sharing knowledge based on the research findings), experiential (i.e., linking the information conveyed to personal experiences) and practical (i.e., ensuring the inclusion of key stakeholders who contribute to care and support). 7

| METHODS AND MATERIALS
This dissemination work was conducted as part of the first author's Economic and Social Research Council postdoctoral fellowship.
However, the study forming the basis of the work was undertaken in 2015-2019 as part of the first author's doctoral research. This used constructivist grounded theory to explore the fatigue experiences of adolescents with SCD in Ghana. 16 The study involved 24 adolescents with SCD (aged 12-17 years) recruited from the teaching hospitals in Ghana's two main cosmopolitan cities and employed semi-structured interviews, drawing, photography and picture-elicitation interviews to generate data. 17 The study findings highlighted several critical issues related to the meaning and significance of fatigue for adolescents with SCD in Ghana and the care and support they received. These included (1) fatigue having a significant negative impact on the young people's everyday life and representing the most restrictive and disruptive aspect of growing up with SCD 16 ; (2) fatigue representing a socially undesirable feature that was stigmatizing and, therefore, a significant threat to 'normalcy'; (3) fatigue having significant actual and potential consequences for the adolescents' biographies in adolescence and adulthood 18 ; (4) gender differences in fatigue experience and parental care and support 19 ; (5) absence of fatigue-related support and care from healthcare professionals 18 and (6) despite the established biobehavioural model of SCD-related fatigue, 20 there were salient social factors that influenced the symptom experience among young people. 16,18,19 Despite the chronicity and biopsychosocial significance of SCDrelated fatigue, 19,[21][22][23][24][25][26] it tends to be an 'orphaned' symptom scarcely prioritized in research and clinical care compared to SCD-related pain. 20,22,26 This lack of attention has been associated with the nihilistic perception that fatigue is an inevitable consequence of the condition, about which nothing can be done and therefore must be endured by those living with SCD. 27 The six main findings from the research study are, therefore, particularly significant in a context where fatigue is treated as an 'orphan' symptom. The challenge of disseminating our findings to reinforce the legitimacy and significance of fatigue and encourage attention to it in care, support and research required strategic considerations of the target audience, the information to prioritize for dissemination and the format and structure of the dissemination work to maximize transfer and uptake of this new knowledge.

| The target audience
Improving the care and support of children and young people (CYP) with SCD, particularly in Ghana, requires the concerted efforts of a community of stakeholders, including governmental health, educational and social institutions, care providers (e.g., physicians, nurses, psychologists, educators, pharmacists, physical therapists), families (parents, carers, siblings, extended relatives), support groups and charities (health, health-related and educational) and community and religious leaders. 28 Given the limited funding to conduct this dissemination project, target audiences had to be strategically selected to focus on those who had an immediate need for the knowledge and play a central role in care and support provision, as well as key change agents and opinion leaders. 29 We capitalized on an opportunity to collaborate and partner with two long-standing SCD-focused charities in Ghana to align the project more closely with their priorities and practice. These charities, playing pivotal roles in developing the best services for patients, are vital components of comprehensive programmes in Ghana. They are staffed by individuals with SCD and their families, key healthcare professionals and individual supporters from the wider community.
Consultations took place with the charities' leads early in the project development regarding which stakeholders to target and how best to reach them to enhance the project's outcomes. The charities were also involved as collaborators in the funding application. The initial project aim was to work with them to facilitate workshops to engage approximately 40 parents/carers, 30 healthcare professionals (from the SCD healthcare teams in the two research settings) and 10 of the charities' leads/volunteers with the key research findings. We As a result, the planned dissemination work was downsized.
Efforts were redirected to replanning the workshops within the funding limits, the SCAGH's reduced support capacity, and COVID-19 restrictions, protocols and preventive measures. In consultation with SCAGH, dissemination was focused on two workshops in the city where most of the study population was recruited. We agreed on one workshop for 20 parents of CYP with SCD and another comprising 15 healthcare professionals (from the SCD healthcare team in one of the research settings) and 5 SCAGH leads/volunteers. On recommendation from the charity and clinical partners, a senior SCD medical doctor and two SCAGH leads were included in the parents' workshop to provide immediate support regarding the feasibility of any clinical-and social-specific comments, reactions and ideas from participating parents.

| Format of the dissemination work
In light of the COVID-19 pandemic and travel restrictions, the research team, SCAGH and clinical partners considered remote facilitation of the workshops. However, we concluded that remote facilitation would not be the most appropriate mitigation for the faceto-face workshops due to the following concerns: Although the dissemination project activities were designed to be COVID-19 safe and offered free of charge to the participants, additional strategies were developed to encourage and increase attendance. For instance, on the recommendation of SCAGH and the clinical partners, the original plan of holding half-day workshops to share the study findings was pared down to two and a half-hour sessions. Rather than create a separate meeting to add to everyone's full agenda, permission was obtained from both SCAGH and the SCD healthcare team to use one of their regularly scheduled meetings for the workshops. The healthcare professionals' workshop was integrated into one of the SCD healthcare teams' weekly clinical meetings and took place in one of the hospital's conference rooms.
For the parents' workshop, we capitalized on the World Sickle Cell Awareness Day commemoration by SCAGH and integrated the activities into their planned activities. Snacks, lunch and other refreshments were offered to workshop participants at the project's expense. Participants were provided with an additional incentive of £25: £10 to defray travel costs and £15 as a 'thank you' for their attendance. Plans were also made to provide on-site childcare for participants who needed it during the workshops.

| Dissemination tools and activities
Although the content for this dissemination project was selected in consideration of the divergent needs and interests of the two sets of specific stakeholders targeted for dissemination, these were grounded in the same research findings. Connecting the knowledge with the stakeholders' specific priorities and practices was more likely to impact their opinions and decision-making. 30 However, as the parents' workshop was held first, ideas and recommendations from this were subsequently included in the healthcare professional and charity lead/volunteer workshop (see Table 1).
The dissemination project goals and related activities are summarized in Table 2. Between April and July 2021, the two dissemination workshops were planned, organized and conducted.
Fifty participants were engaged with the research outcomes, 28 in the parents' workshop and 22 in the health professional and charity lead/volunteer workshops. The healthcare professional participants included two paediatric haematologists, two paediatric medical residents, ten nurses, a pharmacist and a psychologist.
Communication modes and techniques for enhancing knowledge transfer include presenting information that chimes with experiential knowledge 9 and making the implications of the findings more salient. 29 There is advocacy for broad and interactive models of knowledge transfer with activities focused on process and product, emphasizing the crucial elements of reciprocity and exchange between producers and users of knowledge. 31 Consequently, the primary intent of this project was to move beyond passive, one-way dissemination of research findings by engaging the stakeholders to discuss their impressions of the study findings and ultimately to support them in developing recommendations for research, policy and practice that they could take forward in their roles as champions of better care and support for CYP with SCD. The two workshops created opportunities for the individual stakeholder groups to meet to debate up-to-date evidence and engage with and interpret the research findings based on their shared social constructs, such as beliefs, values, culture and norms. Because knowledge is embedded in social relations, 32-34 this enabled the movement of knowledge despite differences in individual participants' level of experiential knowledge. 9 Another key approach to knowledge transfer is the understanding that research findings must be translated into information that is accessible and meaningful to knowledge users. 35 Thus, reader-friendly research reports summarizing the selected findings in versions tailored to parent versus health professional/charity audiences were created in English  Table 3 Table 3). Almost 96% of the parents and all healthcare professional/charity lead/volunteer participants found the dissemination work useful, and 91% of the parents and 94% of the healthcare professionals/charity lead/volunteers would recommend similar dissemination work to others. The dissemination activities evaluated highly on statements on whether the workshops were well-paced, enjoyable, materials were clear and useful, discussions were useful and whether questions were answered well (see Table 3). The statements 'I am likely to put what I've learned into practice' and 'What I learned today will be useful for supporting my child or work' had more than 90% of the participants in each workshop group strongly agreeing.
Sections were included on the forms for participants to indicate their reasons for a nonaffirmative response to the evaluation statements.
However, none of the respondents who disagreed or strongly disagreed with statements indicated their reasons.
91.3% (4)(5) 94.1% (4-5) Can we contact you in the future to assess whether what you have learned today helped you achieve impact?
100% (5) 100% (5) Open-ended What do you think should be changed in the future?
What did you find most useful?
What will you do differently or put into practice due to what you learned today? Following the workshop, one paediatric haematologist summarized their learning and action plans as follows: The workshop has been very insightful that has brought to our attention that fatigue is one of the main symptoms that disturb our patients with SCD.

| Targeted and public education on SCD
The commonly applied usage of the knowledge disseminated during the workshops was in educational and advocacy work. This was evident in the responses from healthcare professionals and charity workers. They referred to incorporating fatigue and its impact in their educational and advocacy activities involving healthcare professionals, religious leaders, parents and families and the wider society.
They highlighted using the knowledge to address some of the myths and misconceptions about SCD that fuel stigmatization of the illness and those living with it (see Table 4). prerequisites for delivering empathic, sensitive and tailored care/ support, which was evident in some of the reports (see Table 4). We are now including fatigue in our clinical discussions and patient and family education as a team. We are highlighting its importance and effects on the children to create more awareness among our medical and nursing staff and our patients and their families. I also use it in my teaching of medical students during their paediatric placements. We now include fatigue in the medical reports we write to schools regarding our patients as a department. At first, we used to only focus on pains and write things like they were not very strong and should be exempted from physical activities. We know from the workshop that these things we write are wrong because they encourage stigma and exclusion. Now, we indicate that they get tired easily and need to be allowed more rest breaks when they need them. We are working on a small booklet for teachers about SCD, and we are going to include fatigue and its impact. (Healthcare professional 4) Working together with the child with SCD After the workshop, I talked to my husband, and we had a conversation with our daughter about her tiredness. It opened our eyes to a lot of the difficulties she was having. She was missing school most of the time because she was too tired from school activities and her chores at home. We have now developed a timetable about chores with her and gotten her brothers to help more in the house. She's now not missing school as much as she used to. We will talk with her teachers about her tiredness and how we can all help her during the next PTA meeting. (Parent 2)

| FUTURE PLANS
Involving fatigue in my consultations has opened up a new way of engaging the children. I used to struggle to engage them in a discussion during their consultations. Since I learned fatigue is an everyday experience and part of their day-to-day activities at the workshop, I am using it to get them to talk about the difficulties they face due to the condition and the support they need. I think there's more trust now because I'm asking the right questions and paying attention to the issues important to them.