Costs, burdens and the prevention of genetic disorders: what role for professional influence?

Cornel, Martina C.

doi:10.1007/s12687-021-00553-0

Cited by 2 publications

(1 citation statement)

References 10 publications

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“…Unlike Western countries, there is little emphasis in healthcare policies in Pakistan on the need for non-directiveness, SDM or ‘patient-centered’ healthcare. Lack of such policies are an indication of a tension between the population goals of clinical genetic services (reducing the birth prevalence of β-TM by persuading individuals) and the goals of supporting individual patients and their relatives to make autonomous decisions [ 18 , 19 ]. Our findings suggest that implementation of the DeSIRe would support both goals, i.e.…”

Section: Discussionmentioning

confidence: 99%

Healthcare professionals’ perceptions of implementing a decision support intervention for cascade screening for beta-thalassemia in Pakistan

Ahmed

Jafri

Ahmed³

et al. 2022

Eur J Hum Genet

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Counselling relatives of individuals with βeta-Thalassaemia Major (β-TM) about cascade screening is the role of field officers (FOs) in the Punjab Thalassaemia Prevention Project (PTPP). This paper presents FOs’ views about using a ‘decision support intervention for relatives’ (DeSIRe) to facilitate informed decision making, and their perception of its implementation and sustainability. Semi-structured qualitative interviews were conducted with nine FOs (June to July 2021) in seven cities in the Punjab province (Lahore, Sheikhupura, Nankana Sahab, Kasur, Gujranwala, Multan, and Faisalabad) following its use in routine clinical practice. Thematic analysis shows that the FOs were overwhelmingly supportive of the DeSIRe, expressing enthusiasm and identifying benefits of its use, both for their own practice and for relatives. They supported the aim of the intervention to enable them to facilitate relatives’ decision-making about cascade screening, and advocated its use more widely within the PTPP and the other provinces of Pakistan. Overall, the DeSIRe was valued by the FOs for use in routine practice. These findings suggest the DeSIRe is highly likely to be implemented by healthcare professionals more widely in the PTPP and, therefore, is worth evaluating to prove its efficacy. Further research is needed on the extent to which the DeSIRe could be adapted for use by other healthcare professionals with similar responsibilities in the other provinces of Pakistan, and in other low-middle income countries.

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Section: Discussionmentioning

confidence: 99%