Educational Support Surrounding Chronic Kidney Disease: Qualitative Enquiry

Objective: An estimated 15 million patients in England have at least 1 long-term condition, with the prevalence of chronic kidney disease rising. Understanding educational support can help navigate between health sectors. Methodology: This research used Qualitative Methodology, and an Inductive Content Analysis (ICA) approach which is particularly effective in linking theory, or framework. Two workshops took place in May and June (2019) wherein topic tagging activities were co-developed between the Renal Patient Support Group (RPSG) and the Kidney Disease and Renal Support Groups (KDARs) for Kids platforms. 19 participants between 4 cohorts, that included 6 General Practitioner (GPs), 4 Healthcare Scientists (HS), 3 Nephrologists/ Clinicians (N/Cs), and 6 CKD Patients (CKDPs) were recruited and participated in telephone interviews. Topic guides were developed for participant cohorts with several themes to collect data through one-to-one telephone interviews. NViVo-12 software provided opportunity to code and glean insight to develop overall conclusions Results: Nine main themes and several sub-themes were identified when coding for health professionals, and 9 main themes and several sub-themes identified when coding qualitative data for chronic kidney disease patients. Conclusion: There needs to be a coordinated effort between patients and professionals, to understand how chronic kidney disease education should be more integrated at point of care, and in line with public health.


INTRODUCTION
Chronic kidney disease (CKD) is a slow decline in general health with malnourishment and wasting related to decreased appetite and progressive metabolic disturbance. 1 However, patients are living longer and more awareness through local solutions and community, and social media platforms have supported to inform and deliver health improvements for CKD patients, 2,3 and in those patients who are suspect/high risk for end-stage kidney disease (ESKD). 4,5The inclusion of service users is growing but it has not been evaluated or contextualized around educational provision and use of Social Media platforms. 6,7

Aims and Objectives
The aims and objectives of this work include the following to understand how healthcare and education for CKD patients encourage patients take ownership of healthcare.The objectives of this research are as follows: (1) to describe how CKD patients are managed in between healthcare sectors with a view to capture and analyze qualitative data from the perspectives of patients and professionals and (2) to understand options for obtaining advice and educational support through an online platform.

Research Question
This UK study seeks to understand Educational Support surrounding CKD and explore Patient and allied health professional (AHP) Perspectives.

Chronic Kidney Disease and the Role of Education
There is evidence to suggest that more health promotion in the community can also support some of the educational complexities relating to health and disease. 7,8A need is found to educate the educators in surrounding the long-term condition (LTC) model and through a population health approach. 9,6,10,11It has been perceived educators integrate aspects of LTCs well yet found prevention and early detection is at the 'hard end'. 12,13][16] Therefore, it is now more transparent that integration of point of care is becoming more important to patients with LTCs where, especially healthcare has become more remote. 17,18[20][21]

METHODOLOGY
The Research Scientist Investigator (RSI) involved in this research played the role of facilitator, thus adjusting use of topic guides to effectively involve participants involved.At times this required the RSI to also play a slightly more professional role, providing background of research to fulfill inclusion and exclusion criteria, so thus to help inform the sequence of activities.The justification for using a qualitative methodology design is that it tends to help answer multi-faceted questions. 22Similar methodologies have also been used to help answer questions relating to healthcare education. 17,23rough co-development, the RSI also organized 2 high street community workshops in Bristol City, England UK (May 2019 and June 2019).Aligned to Patient and Public Involvement (PPI), which was an important mechanism; involving patients led to achieving rigor throughout this research.As part of this investigation, 13 team members, 7 admin members from the RPSG and 6 from the Kidney Disease and Renal Support Group (KDARs) for Kids attended the workshops.Basic evaluation and feedback provided an understanding of patients' perspectives surrounding access to healthcare education to focus aims and objectives surrounding this research.The workshops were codeveloped between patients, researcher, and co-founders of the 2 social media platforms.
Following workshops, a topic tagging activity was implemented between the 2 platforms.In following workshops, a third Renal Workshop Event also took place in collaboration between the RPSG and KDARs, October 2019 wherein topics between the 2 global social media platforms were co-developed having understood aims and remit of the RPSG and KDARs.Tags were co-developed against 14 14 different topics having investigated over 1-month (March and April 2020) most popular healthcare terminologies.Topics were tagged for 2-weeks per social media platform (i.e., 2-weeks through RPSG, online adult population and 2-weeks through KDARs, online pediatric renal population).Topic Tagging example was implemented following research outlined by refs (24-26).Table 1 highlights an overview surrounding Topic Tagging Activity.

Ethics Approval
This research proposal has undergone both academic and NHS Ethics approval process highlighting all aspects of research.General Data Protection Regulation (GDPR 2018) guidelines were implemented to ensure best practice surrounding confidentiality, data protection and compliancy.Information sheets and consent forms were produced to inform participants the intentions and outcomes.This research was appraised according to academic ethics committee, and NHS ethics prior to starting any data collection and all other aspects of this investigation.Ethics application had been granted via the University of West of England (UWE) ethics committee and by Greater Manchester South Research Ethics Committee (Project ID: 19/NW/0282), before recruiting patients and healthcare professionals.UWE ethics approval was granted on 21 st May 2019 and NHS Ethics approval by favourable opinion was granted on 18 th June 2019.The ethics processes covered a broad focus

MAIN POINTS
• Educating healthcare professionals surrounding the importance of the patient role and how to be more interactive with patient care still requires integrative practice.• Targeting the attitudes and behavior of providers through potential solutions is important so that the relationship between the patient and the provider is balanced and smarter.• Patients/carers still want more face-to-face understanding of test results, and between the 2 social media platform initiatives (i.e., RPSG and KDARs), there has been implementation of pilot patient and AHP webinars to deliver educational support through media such as Facebook, YouTube, and Instagram.• Smarter working will help in meeting challenges on educational needs to support CKD patients.This will also reduce fatigue, increase streamlining healthcare services, to reduce existing impacts.Scheduled telephone interviews were conducted to ensure high number of participants and positive interview experiences.Guidance was sought from supervisory team, and several texts to gain understanding of process flow 33,34 to ensure academic rigor. 35,36Interviews conducted were balanced with an informal requirement to respond to questions asked by RSI.Participants were informed they would receive a research summary following completion.

Data Protection, General Data Protection Regulation 2018, Privacy, and Storage
All data retrieved from telephone interviews will be stored using NVivo software during and after analysis.NVivo software will be installed on a password-protected computer in an office on university campus grounds.All information participants provided was confidential and used for the purposes of this study only used for the purposes to investigate research question.The data were collected and stored in accordance with the General Data Protection Regulation (GDPR 2018), and any unnecessary data were disposed of in a secure manner.Data (especially paper copies) were only accessed by those on the research team.All participant data have been collected outside the university site and housed on a secure server with firewall protection within university.
Topic Guides, Telephone Interviews, Schedules, and Support Participants were informed of telephone interview schedules once organized.This information was outlined in a research recruitment flyer.Participant Information Sheets were made available either at recruitment site or through the RPSG and outlined how telephone interviews would take place.The RSI provided contact details to all participants, so they have opportunities to ask questions.At times, it was important to remind participants regarding schedules and this was achieved sending Topic guides were used to provide a basic content and structure of semi-structured qualitative interviews.Scheduled telephone interviews were conducted to ensure data generated was high quality and participants had positive interview experiences.Guidance was sought from several texts to gain understanding of process and flow 33,34 and to ensure academic rigour 35,37 during (and following) interviews 35,36 and again, guidance was implemented via academic supervisory team.Interviews seeked to address the research question and objectives gaining perspectives across 4 cohorts whilst recognizing that everyone had a different understanding and experience.Participants were briefed prior interview recording and involved retrieving consent, and participants were informed about the nature of research, and expectations.
The RSI informed participants that interviews were to be recorded, and highlighted formality of the interview process, according to Refs.33, 34, and 38.Telephone interviews were conducted in a private setting.To help reduce interview bias, participants were informed that it would be important to provide views in relation to LTCs according to literature and healthcare.The topic guide/s instrument included a closing discussion which reflected on themes-points raised during interviews provided an opening for participants to reflect on the interview content.Participants were provided RSI and academic supervisory team contact information; telephone interviews were implemented and audio-recorded after taking consent.Supplementary Information in this works highlights the topic guides implemented by way of qualitative enquiry across 4 cohorts.

Sites and Participant Identification
The

Participant Approach
Before recruiting participants, the RSI approached participants to identify if were deemed suitable to be involved in this investigation through face to face and/or telephone communication.Contact details for participants were made available for participants to approach the RSI, so that they can retrieve more information about the research before making a formal decision of getting involved.The RSI, as part of the process, seeked informed consent after providing overview of the study.

Participant Recruitment
Prior recruiting, the RSI established whether a potential participant is suitable to be involved in this study through telephone or email communication.Potential participants will have the opportunity to ask questions about this study.The RSI also informed participants that this work will be used for research purposes only.Research Introductory Flyer, Information Sheets, Topic Guides, and Consent forms were made available prior recruitment.Quota sampling was used and allowed the RSI to ensure there is equal or a proportionate representation of participants depending on age, race, gender, and education. 39This process also prevented a selection bias.A dedicated advertising section of the RPSG website was organized by the RPSG team once ethics applications had been granted via the University Ethics Committee and NHS Ethics to recruit patients and health

Inductive Content Analysis
1][42] Inductive content analysis is also known as a method of analyzing documents.Inductive content analysis allows an investigator to test theoretical issues to enhance understanding of the data.It is assumed that when classified into the categories, words, and phrases, ICA data creates meaning. 27

Inductive Content Analysis Basis of Analysis
Interview data is initially presented thematically, and thereafter analysis involved an added layer implementing ICA to contextualize qualitative data collected.Inductive content analysis also helped understand context of relating Health Professionals, and CKD Patients.Since this research was multifaceted, a theoretical and coding framework with ICA phases helped highlight understanding surrounding CKD according to public health, and educational needs for patients to contextualize. 27

Inductive Content Analysis Process of Analysis
Inductive content analysis was implemented in this research because there has been little or no prior knowledge contribution to research that seeks to answer question.What has been highlighted in literature is that where knowledge surrounding education is fragmented-ICA approach is recommended. 27,43he categories are derived from data in ICA.Researchers are prompted to understand in some level of detail sampling considerations before selecting the unit of analysis. 27,43

Inductive Content Analysis Applications
Inductive content analysis has notably been applied across several areas in health research investigations. 43In broad context, ICA can be applied to also help understand and explain patterns and sequences of qualitative data.It thus helps investigators and audience to appreciate 'conditions' across data set. 27,30esearchers implement ICA use to obliquely or unambiguously as an analysis tool to generate theoretical suggestions. 30

Inductive Content Analysis Measurement of Error
Inductive content analysis is a tool to help assess both intricate and fragmented questions of a very specific type. 30nvestigations that seek to implement ICA or sub-categories thereof is where potential uncertainty can arise if against research question, hypothesis or condition being explored.
Measurement of error will be applied, implementing guideline summarized by Ref. 29 thus through preparation, organization, and reporting phases, respectively.

Justification For Inductive Content Analysis Approach
Having become acquainted with transcript data, NVivo-12 software allowed generating initial codes for ICA.NVivo-12 software provided opportunity to classify, sort, and arrange transcript context and thus allowing time to analyze data, glean insight, and overall develop conclusions. 32Using the Coding Density facility on NVivo-12 software was particularly helpful because this supported tracking of analysis for ICA and semi-structured topic guides were developed to help prompt data collection across participant cohorts.

There are many people also who would not understand, despite leaflets, what the hell CKD is and what is good for them. Wider Health Professionals who have expertise where patients can visit, or contact would be more proactive. Relating CKD2, GPs code it according to what has been conveyed by healthcare scientists in the laboratory but because it does not have physical impact on patient-it only gets described as a 'problem' in patient notes and not much else (NW).
There are a significant number of patients who do not want to understand what CKD is and what lifestyle changes are required.
There are many people also who would not understand, despite leaflets, what is good for them.[46]

Education in Healthcare Surrounding Long-Term Conditions
It's how bothered patients are and how much information do patients want.Having pre-printed information.I mean there's certain things, for diabetics-information leaflets, from the Diabetes Society….. Would be helpful to have similar for CKD Patients (OG).

NHS does not 'make collaboration' easy. Community Education from MDT-not just CKD but other LTCs as well (MR).
One GP perceives that the level of patient engagement is key in terms of how much information they want. 12,47,48It could be suggested that the level of patient engagement relates to many complexes, broader factors connected with individual circumstance, demographic factors, health literacy, family, and history. 49,50A second GP informs a need for patients to be provided with information and need for wider education. 49,50ducation through Technology and Digital Healthcare

General concerns surrounding education-certainly, many hundreds of websites for patients and professionals to choose from via Google-overwhelming (MR).
Patient care necessitates understanding health education seeking behavior and modes of delivery to improve knowledge surrounding health and disease. 3,5,7Understanding here reveals that large amounts of health education is available to CKD patients online however, there is a requirement for patients to be guidance on how to navigate context appropriately for it to be implemented. 16,17ture Roles of Allied Health Professionals CKD2 and that whole pathway currently still lacking most of the time.Could be a decent 'channel' for those who visit GP-land to see wider healthcare professionals.Healthcare scientists could be involved here (NW).Smarter Algorithms and sharing information.MDT approach-everyone has a responsibility to contribute best practice.GPs focus on AKI (not so much CKD), Renal Consultants coming out and teaching GPs about CKD has probably been the most significant development in last decade (AH).
One GP suggests a need for a shared approach in care of CKD patients where specialists to educate non-specialist health professionals (GPs) on CKD.In context, GP states: 'Smarter Algorithms and sharing information.MDT approach-everyone has responsibility to contribute best practice'. 47

Screening and Kidney Biomarkers
Perception is unsubstantiated in primary care-the difficulty that comes is, what in terms of monitoring them, does patient's blood need re-check?Are there other underlying causes?(OG).No routine monitoring, but there are alerts on GP systems to prompt screening GPs can also look at renal urine/protein to provide some sort of indication relating stage and severity.Not so much for CKD-more for AKI (SW).
Understanding reveals that there is little consistency with regards to the monitoring of CKD patients in primary care, and GP suggests the need for clearer guidance on monitoring CKD patients, especially in relating to severity. 12

If GPs know that there is a patient who has got CKD or is at risk of developing CKD, or on medicine which increases the risk of developing kidney insufficiency, they will 'play safe' . It really is about patient safety (SW).
A GP relates understanding patient safety and medication management; there is a need to be aware of patients who may be at risk of developing CKD due to medication use.Diagnoses and coding are key. 49,50althcare Scientists (Allied Health Professionals)

Understanding of Chronic Kidney Disease and Perception of Kidney Healthcare
So, I suppose one thing about knowing about the numbers and understanding them is that if we're over reliant on the numbers then we might be falsely reassured for instance.I do not know whether that's an enormous gap, I suppose I think part of the understanding of the blood results is that it's part of a bigger thing, which is taking control of your illness and understanding its treatment and being a partner in your own care.So, I think it's an important part of that, but don't know whether understanding adequately is a big gap to be honest (DT). ][18]

Education Through Technology and Digital Healthcare
Could look on the internet in various ways and they can use patient support as they often do, they can do all sorts of online exploring-those people who use online forums.Here the patients have access to fellow kidney patients, so they can.I think that's got a role in finding things out (DT).
Understanding highlights the importance of peer support for CKD patients, in terms of providing education and patient support. 14,16,17

Health Literacy and Professionalism
Now, I suppose some people might argue that that information is given in such a raw form as to be too complicated to understand for many patients or that you might say that many patients might not have the ability to understand that information (DT).
Understanding informs the importance of acknowledging patient health literacy levels, and a need to provide education that is accessible to all. 13ture Roles of Allied Health Professionals I mean we get a lot of phone calls from GPs and sometimes we feel that they don't all necessarily need to come through us but we're usually available, you know, the registrars are usually available at the end of the phone and that's where they go and sometimes you think, yes, they could potentially have other access that would be able to answer-I think that would be good actually, that would be brilliant (KA).
Nephrologists understanding inform a requirement for CKD patients to have specialist input in helping them interpret and understand medical context.Research has also several areas where future roles for professionals should develop best practice. 48

Understanding of Chronic Kidney Disease and Perception of Kidney Healthcare
People do not know, mistaken for diabetes.Fluid overload is a problem; it is because of the heart again because the heart needs to work.I've seen it for myself, a lot of people don't understand why.Mentioning kidney failure is not a good idea because the patient might not be aware what they are looking for and some patients will feel there is a certain way they feel, and they will take it as the norm (AO).
Patient informs what CKD is and why fluid retention occurs.
The patient talks about how health professionals should communicate with patients around CKD and how patients may not understand certain medical terms. 50Context highlights the importance and presence of condition.Patient View has improved self-management of CKD and social media has its place.Technology is integrated into everyday lives.Access to social media also offers patients access to peer support, However, it must not be presumed that all LTC patients can interact and engage with aspects of technology, online spaces, or healthcare. 18Primary care networks also offer a solution wherein multiple HPs could be involved to support health educational needs. 47E-Learning/ modules can offer a solution for educational support, and this could lead to with higher levels of literacy and educational attainment.

DISCUSSION
5][26] All CKDPs were in between CKD4 and CKD5; telephone interviews were short, but allowed participants to put forward views and understanding, relating to educational needs, and patient care.Using an ICA approach has helped gain a rounded understanding of the research question, and healthcare requirements, specific to CKD suffers.
Access to AHPs through online spaces could also provide patients with educational support improving quality, experience, and evidence-based practices.Mentoring, training, and patients sharing experiences should be about inclusivity and empowerment. 47Patients and families will also require educational support surrounding guidance on self-care.Access to AHPs through online space could also provide patients with educational support improving quality, experience, and evidence-based practices. 47 2030 (if not before) AHPs can perhaps expect to be better integrated into pathways, working through online spaces and group consultations. 18Having access to a network of AHPs prompts CKD patients to be more included in aspects of healthcare, thus increasing practical understanding of disease, treatments and overcoming educational barriers, and addressing possible healthcare inequalities.Peer to peer interactions can be used to educate and empower patients, but alone it is inadequate and imperfect.Whilst there is some novel educational projects and proposals taking place, joined up thinking would prompt a smarter working relationship across professions to drive an all-encompassing approach to CKD and wider LTC care pathways to convey better outcomes for patients' future. 18,20here is scope for service development and initiatives relating patient care through online education and peer support, but there needs to be a coordinated effort between service users and providers, to understand how and where inclusion can be improved, including online and social media platforms for healthcare education provision. 6,18

CONCLUSION
After documenting, interviews were critical in generating themes in preparation of ICA implementation.19 telephone interviews between 4 cohorts were conducted with a requirement to respond This research informs that there is scope for educational service development and initiatives focusing on AHP involvement, 47 but there needs to be a coordinated effort between service users and providers. 6oint of Care Education could be integrated through online space (e.g., via the RPSG) and linked to EPRs.Educational support is thus required wherein there is access to AHPs prompting advice, guidance, and support through online spaces, aligned to traditional physical consultations. 20This research informs that co-developed education modules could be delivered between patients and AHPs. 47Education modules could be linked through social media platforms, integrating a proposed Education Pathway for CKD patients so that public health, and research meet practice excellence.Informed Consent: Both verbal and written consent were obtained by healthcare professionals and patients to take part in this study.

Declaration of Interests:
The authors have no conflict of interest to declare.

Funding:
The authors declared that this study has received no financial support.

Table 1 .
PPI Topic Tagging Activity between RPSG and KDARs Social Media Platforms

Table 1 :
The RPSG/KDARs assigned several tags having conducted baseline investigation to understand what topics and subject entities are important to CKD patients (pediatrics and adults) globally.Table1summarizes PPI Topic Tagging Activity between RPSG and KDARs Social Media Support Groups.Education is identified as an essential tool wherein patients become more autonomous surrounding health and disease.The topic tags would serve as proposed over-arching themes wherein patients have questions, and where there is opportunity for educational support through advice giving, guidance surrounding clinical and non-clinical case scenarios.Depending on structure of advice, this is where online consultations could be encouraged, involving AHPs.Application Programming Interface (API) would encourage building a database outside of Facebook, and ultimately involving patients and AHPs knowing who/when to contact.Given the significant consequences to patients' health and the economic impact on healthcare systems, interventional updates could also be a way to integrate education and involving patients and AHPs.Educational Modules should encourage patients and professionals to support best practice with equality.The following links provide an overview surrounding the 2 workshops: Workshop event (1) Review-Renal Awareness Event Hosted by The Renal Patient Support Group at 65 High Street | NailseaTown.comand Workshop event (2) Review-Kidney Disease Awareness Event Hosted by The Renal Patient Support Group at 65 High Street | NailseaTown.coman email or by telephone correspondence.Introductory letter/flyer was available to read with information sheets, topic guides and consent forms with research team details on all documentation.

Table 2 .
Participants Recruited and Cohorts The webpage allowed the RSI to display research flyers, participant information sheets, topic guides and consent forms.The RPSG website details were made available to participants to complete online (available at RPSG for Advertising | The Renal Patient Support Group (RPSG).Table2highlights Participants Recruited and Cohorts.

Education through Technology and Digital Healthcare
14Future Roles of Allied Health Professionals If a CKD patient was in an A&E setting and they were known in GP-land in that regard, it would be useful if an A&E clinician could get laboratory context directly from a summary care record (SCR) then absolutely-it would be useful for patients and professionals to have a smarter understanding from AHPs relating lab investigations and parameters (MC).Healthcare requires smarter links between health and social care.This could expand roles of 'traditional healthcare scientist' (AF).

50 Appropriate Educational Support So
, they haven't necessarily got the time to be so one on one with your care.So, it's a lot more just like, "Here's what you need to know so go and look it up yourself.Kind of thing.If there was a level off, they'd give us like booklets.They'd talk to my mum and dad and explain to them what they could do to help, all that jazz (AM).

Influences on Willingness to Take Ownership of Health
12,17,50disciplines, this would reduce inequity, increase influence on taking ownership, and improve overall healthcare in CKD population.12 I'd just ask the nurse in dialysis but to be quite honest, I think the nurse would be reluctant.That's my experience, when you get results, they seem a bit, oh, they don't want to be running around.The problem is, when I was in the other unit, I had a good nurse because what she would do is, oh, your results are good, and that's it, she'll just tell me your results are good (AO).It is key to have links between patient accessing test results digitally following medical appointments.Patient View, for example is secondary care specific.Patient did not indicate whether access to health record should be between primary or secondary care or healthcare sector specific.By encouraging education across health Ethics Committee Approval: Ethics application had been granted via the University of West of England (UWE) ethics committee and by Greater Manchester South Research Ethics Committee (Project ID: 19/ NW/0282), before recruiting patients and healthcare professionals.UWE ethics approval was granted on 21st May 2019 and NHS Ethics approval by favourable opinion was granted on 18th June 2019.