Author: Kate Armstrong
Armstrong, Kate, 2021 A health needs assessment (HNA) to improve health outcomes and redress inequities for children living with nephrotic syndrome in Vietnam , Flinders University, College of Medicine and Public Health
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Background
In 2008 and 2009, publications by leading paediatric nephrology staff from two of the largest children’s hospitals in Vietnam [4, 5] identified Nephrotic Syndrome (NS) as a significant public health concern in Vietnam. Inequitable, preventable and premature morbidity and mortality were attributed to a range of challenges, including: late referrals from and delayed diagnoses within the primary care setting; financial burdens on families; unaffordable access to essential medicines; loss to follow-up; the absence of a renal registry and accurate data; workforce capacity constraints; and limited facilities for investigation and renal replacement therapy (such as dialysis or kidney transplantation).
Since 2004 the researcher had collaborated with paediatric nephrologists and endocrinologists in Vietnam through the work of Australian NGO CLAN (Caring & Living As Neighbours) to drive large-scale, sustainable change for the community of children living with Congenital Adrenal Hyperplasia (CAH). In 2010 the researcher was invited to focus this doctoral thesis on similar action to benefit the NS Community of Vietnam. Following consultation with colleagues in Vietnam and Australia, it was agreed this research project would focus on strengthening understanding of the felt needs of the NS Community of Vietnam, with a parallel commitment to critical action in real time to improve health outcomes and redress inequities. The NICE Health Needs Assessment (HNA) framework [6] was determined the most appropriate vehicle for translating knowledge to critical action as a priority.
Method
This HNA was conducted in five stages. Stage One (“Getting started” – Study One) used a Participatory Action Research (PAR) approach to establish governance processes and develop the evidence base, information gathering tools and other resources needed to successfully conduct the HNA. Stage Two (“Identifying Health Priorities” – Study Two) used a mixed methods approach to consult with a range of stakeholders (using interviews and surveys) to better understand the challenges and burdens facing children and families, and identify practical recommendations for change. Stage Three (“Assess Priorities for Action”) reviewed the evidence base collated in Studies One and Two, reflected on the processes and findings to date and proposed a range of critical actions that might be taken to redress inequities and improve health outcomes for the NS Community of Vietnam. Stage Four (“Planning for Change”) captured the broad range of collaborative activities that were implemented in real time throughout this HNA, as informed by CLAN’s strategic framework for action, and Stage Five (“Moving On / Project Review”) considered the extent to which the actions taken addressed the priorities identified throughout the HNA consultation process.
Results
Three PAR cycles were used in Study One to facilitate establishment of strong governance processes and commence development of a CHEAR (Child Health Equity Action Resource) Toolkit, which incorporates a series of information gathering tools that were successfully trialled in pilot interviews ahead of their formal implementation in Study Two.
In Studies One and Two, quantitative and qualitative data were collected using the novel information gathering tools between August 2011 and May 2012 at the three largest children’s hospitals in Vietnam. There were 426 parent surveys, 45 semi-structured parent interviews and 45 health professional surveys completed during this time. Families identified financial burdens; the chronic, relapsing nature of NS; lack of knowledge about NS; access to quality care; and the psycho-social burden of NS as amongst their greatest challenges. Priorities and recommendations for change proposed by families were consistently reported back to health professionals and other government and international stakeholders in a timely manner and their insights informed all actions. Key recommendations from families included the need for relief from financial burdens; optimisation of medical management; helping families learn more about NS; provision of support for the most vulnerable families; strengthening health systems to support families; and other NS specific interventions. Health professionals largely echoed the families’ priorities but also provided insights into health systems changes and professional development opportunities for change.
In the final two stages of the HNA, the processes used to translate knowledge to action in real time were analysed. CLAN’s strategic framework for action was determined effective in pre-emptively identifying critical actions capable of improving health outcomes and redressing inequities for children living with NS in Vietnam, and aligned well with final recommendations emerging from the consultation conducted with families and other stakeholders throughout the HNA. CLAN’s Action Plan for NS in Vietnam facilitated a transparent and collaborative approach to the allocation of roles and responsibilities with regards the rollout of critical action in real time, with a clear and strategic focus provided by CLAN’s five pillars. Affordable access to medicines (Pillar One) was unexpectedly addressed in August 2011 when the Vietnamese government included all drugs needed to manage NS in the national insurance scheme. Other priorities that were actioned in accordance with the pillars included: translation of educational resources into Vietnamese language; training of health professionals in the management of NS; empowerment of families to conduct urinalysis at home; financial support for as many families as possible to attend NS Club Meetings for encouragement, networking and education; and targeted communication to address widespread myths and misinformation. Clear communication amongst all stakeholders using the CLAN Action Plan minimised duplication, strengthened communication, allowed for rapid sharing of achievements and aided early identification of potential risks and barriers.
Key findings to emerge from this research project, reflections on strengths and limitations, and recommendations for future directions are presented in Chapter 6. The CHEAR Toolkit is presented in Appendix One, and offers a sample of the many tools, resources and products developed throughout the HNA (including final versions of the information gathering templates that were used), with a view to minimising the need for others to reinvent the wheel.
Conclusion
By focusing this HNA on the felt needs of the NS Community of Vietnam this research project offered a new lens through which to view the complex array of challenges and burdens facing children and families living with NS in Vietnam. Insights from health professionals most intimately involved in caring for children and families living with NS were critical to the success of the project.
The importance of partnerships, teamwork and multisectoral collaborative action were reinforced by CLAN’s strategic framework for action and the researcher at every step of the project. The unexpected and most welcome legislative change by the Vietnamese government in August 2011, to ensure all medicines needed by the NS Community of Vietnam were included in the national insurance scheme, was a radical game changer and allowed for the redirection of modest resources to initiatives beyond advocating for access to medicines.
In closing, the researcher would highlight CHECC (Child Health Equity Check Count) Scorecard as an innovative tool emerging from this doctoral thesis. The CHECC tool has the potential to prompt all health professionals at the time of diagnosing a child with a chronic health condition to consider the range of factors identified in this HNA (be it from the literature or data presented herein) associated with survival. The researcher believes this tool warrants further use and research, as it offers a strategic approach to the rapid and scalable identification of children who are most at risk of premature or preventable death.
Keywords: nephrotic syndrome, health needs assessment, Vietnam, child health, equity, noncommunicable disease, NCDs
Subject: Public Health thesis
Thesis type: Professional Doctorate
Completed: 2021
School: College of Medicine and Public Health
Supervisor: Professor Paul Ward