Using Formative Research to Develop a Counselor Training Program for Newborn Screening in Ghana

Abstract

Sickle cell disease (SCD), sickle cell trait (SCT) and related conditions are highly prevalent in sub-Saharan Africa. Despite the public health implications, there is limited understanding of the unique needs regarding establishing and implementing extensive screening for newborns and appropriate family counseling. We sought to gain understanding of community attitudes and beliefs about SCD/SCT from counselors and potential counselors in Ghana; obtain their input about goals for counseling following newborn screening; and obtain guidance about developing effective counselor education. Five focus groups with 32 health care providers and health educators from 9 of 10 regions in Ghana were conducted by trained facilitators according to a structured protocol. Qualitative data were coded and categorized to reflect common themes. Saturation was achieved in themes related to genetics/inheritance; common complications of SCD; potential for stigmatization; marital strain; and emotional stress. Misconceptions about SCT as a form of SCD were prevalent as were cultural and spiritual beliefs about the causes of SCD/SCT. Potential positive aspects included affected children's academic achievement as compensation for physical limitations, and family cohesion. This data informed recommendations for content and structure of a counselor training program that was provided to the Ministry of Health in Ghana.

Community engagement to inform the development of a sickle cell counselor training and certification program in Ghana

“…Additionally, advisors emphasized targeting cultural and religious gatherings with SCD information to help dispel any myths and stigma. This is consistent with previous findings that health workers considered misconceptions and cultural and spiritual beliefs about SCD to be prevalent in Ghana and these must be addressed in a culturally sensitive counseling and health education program (Treadwell et al 2015). Finally, the advisors supported the need for resources and appropriate facilities for an effective counseling program.…”

“…In the first stage, we conducted formative research using focus groups and qualitative methodology to gain better understanding of SCD and SCT within a cultural context from a representative sample of 32 healthcare providers and health educators (Treadwell et al 2015). These healthcare workers, selected by the ten Regional Health Directors of Ghana, participated in group sessions to explore health beliefs, cultural and religious practices, and societal attitudes that may influence people with SCD.…”

Community Health Workers as Support for Sickle Cell Care

“…In Ghana, home visits by CHWs help families cope with new diagnosis of SCD in a newborn screening program. 78 In a peer mentoring pilot program at St. Christopher’s Hospital for Children, older adult volunteers who raised a child with SCD advise new families on medical and child-rearing practices. 79 In St. Louis, CHW home visitors promote early cognitive development, promote clinic attendance, and medication compliance.…”

Current status of newborn screening worldwide: 2015

“…Obviously missing is Sub-Saharan Africa for which little information is currently available, and limited congenital hypothyroidism (CH) and sickle cell NBS activities are ongoing. [13][14][15] A review of the literature and personal contacts working in Africa revealed documentation of various beginning newborn screening activities in Ghana, 16,17 Nigeria, 18 Tanzania, 19 Angola, 20 Ethiopia, 21 Democratic Republic of Congo, 22 and South Africa. 23,24 For the remainder of the world, we have drawn on our extensive NBS experience and contacts with NBS program managers within our respective regions to solicit recent updates in order to comprehensively describe ongoing regional NBS activities.…”