Integrating non-medical needs for Chronic Diseases: the example of Type 1 diabetes

Author(s) David Beran1.
Affiliation(s) 1Division of International and Humanitarian Medicine, University of Geneva, Geneva, Switzerland.
Country - ies of focus Tanzania,Thailand,United Kingdom,United States,Vietnam
Relevant to the conference tracks Chronic Diseases
Summary Onset of Type 1 diabetes leads to a “biographical disruption” where the individual’s life completely changes. International standards for clinical management of diabetes exist, but fail to adequately consider the needs of individuals beyond those provided by the health system.
Background Type 1 diabetes is the most common paediatric endocrine disorder and the second most common Chronic Non Communicable Disease to affect children after asthma. Type 1 diabetes is characterised with the need for life-long care including daily insulin injections, management of diet and lifestyle as well as regular check-ups. Diabetes highlights the problems of managing Non Communicable Diseases in many health systems as these are not currently organised for long-term care of individuals, but rather acute care. As these Chronic Non Communicable Diseases are now the leading causes of death in the world, health systems need a “paradigm shift” from an acute to a chronic care model. However, this shift focuses primarily on the organisation of the health system and not individual’s needs.
Objectives The objective of this research is to identify non-medical needs for people with Type 1 diabetes and highlight that there is more to diabetes management than what is included in international guidance.
Methodology It was decided to use a qualitative approach in this research using Grounded Theory as this provides a systematic framework for collecting and analysing qualitative data that is flexible and assists in the creation of theories “grounded in the data collected”. Small samples can be used in GT as the aim is to develop concepts and the relationships between different concepts. A qualitative design was used as this is a new area of study and has as its aim the development of a new theory. This meant that the interviews needed to be carried out in a flexible way allowing the interviewee to freely speak about their experience. Also, as the topics were unclear, as they were to emerge from the research itself, different questions or areas of investigation needed to be researched as the project advanced. Therefore any form of structured data collection tool would have made it impossible to investigate the depth and breadth of the issues. Interviews were carried out in 13 countries with a total of 100 individuals with Type 1 diabetes interviewed. The interviews were transcribed verbatim and analysed using NVivo software. This enabled needs to be identified and defined as "tangible" (being able to be provided by the health system), "process" (the way this element is delivered is important) and "intangible" (falling outisde the normal role of the health system).
Results Needs can be viewed as tangible in that they can be provided by the health system, e.g. insulin, access to specialists, etc. Others are processes that entail a series of needs or actions to fall into place, e.g. proper diagnosis. Finally a third category that will be labelled intangible is when a variety of factors will contribute to these, e.g. routine, personality, etc.The tangible needs identified were: Access to specialists; Awareness of population; Community support; Control e.g. blood or urine glucose; Delivery of insulin; Family support; Financial aspects; Healthcare worker knowledge; Healthcare workers; Information and education; Insulin; Peers and Policies.Processes described by the interviewees were: Clear path of care - Organisation of care; Follow-up (Clinical); Management of diagnosis and Proper diagnosis.

Finally intangible aspects were: Acceptance; Active involvement; Adapting; Being Open; Being special - special treatment; Confidence; Cure; Discipline; Experience; Explanation; Hope; Independence; Knowledge; Motivation; Personality; Positive aspects; Psychological factors; Putting it into practice; Reassurance; Relationship with healthcare worker; Routine; Second nature; Stigma and Theory versus practice.

Conclusion Current diabetes management is far from perfect and it is argued that this is due to a disjuncture between what health professionals feel is the best way to manage Type 1 diabetes and the capacity of people with Type 1 diabetes and their families to manage this condition. It could be argued that this is due to more needs being "intangible" for people with diabetes than "tangible". Health systems, in their transition to the proper management of NCDs, need to include these "intangible" needs as they may impact diabetes management as much as the absence of tangible or process needs. Health systems will need to find effective ways of doing so. As Type 1 diabetes can be considered a tracer condition this work has an impact for other chronic conditions.

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