Research Article

Developing a General Population Screening Programme for Paediatric Type 1 Diabetes: Evidence from a Qualitative Study of the Perspectives and Attitudes of Parents

Table 1

Burden of screening framework.

DomainConstructDefinition

Pre-screening tasks designated to participantsUnderstanding of target disease or conditionAcquiring, understanding, and interpreting information from a number of sources (including specifically developed materials, the internet, and social and mainstream media) on the causes, symptoms, available treatments, prognosis and long-term management of the target disease(s) or condition(s) [19]
Rationale for screeningThe process of acquiring knowledge of the benefits of screening vs associated risk, including both targeted, and general population screening [20ā€“22]
Decision-makingThe autonomous decision to participate informed by their perception of the benefits and risks of participation [23, 24] often supported by purposely designed decision tools [25]

Factors influencing engagement with screeningManaging tasks involved in screeningThe impact of performing the tasks related to the screening process. Includes administrative tasks involved in managing and maintaining the screening process, precautions taken before or when performing tests, and planning and fulfilling visits to the appropriate location/healthcare provider [26]
Personal characteristicsPersonal or first-hand experience of illness/condition (including first degree relative); level of health literacy; individual beliefs around health and well-being [27, 28]
Situational factorsThe contextual factors that determine whether and how patients can manage the processes involved in screening including changes in personal circumstances (such as a change in job) or in personnel of their healthcare team [8]
Structural factorsThe nature and accessibility by participants of resources directly related to the screening process. Includes continued contact or access to healthcare professionals, structured support and education mechanisms and peer support [8]

Consequences of screening participationImpact on professional, social, family life, and leisure activitiesThe professional and social consequences that affect participants as a result of the screening process and/or the results. This includes balancing the pursuit of meaningful activities with appropriate attention to (potential) illness needs, and the opportunity cost in professional/social life [8]
Financial impact of healthcare tasks designated to participants post-screeningDirect costs of (actual/potential) follow-up related to the value of resources used in supporting adherence to the screening programme, or the results of screening. Also includes Indirect costs of screening such as time lost from work [29]
Emotional impact of screening participationThe varying ability of participants to explore, express and process various emotions in response to the (potential) loss of health or functioning resulting from participation [20]
Includes intrinsic factors relating to resilience and inner resources, and external factors relating to the availability of social support (e.g., as drawn from family, friends, community, or spiritual beliefs) [20]
Living with the outcomeThe capability, preparedness, and extent to which an individual can or will accommodate the results of participation. This includes the ability to understand and manage recommendations from healthcare providers [30]