Impact of late-onset group B streptococcus infection on families: An observational study.

Abstract Objectives Understand the parental impact of having a baby affected by late-onset group B Strep (LOGBS) infection. Understand the social, mental and financial impact on parents/carers or family members of those affected by LOGBS infection. Investigate family information needs and experiences of information provided. Study design We devised a 57-item online survey, composing of binary and matrix questions and free text answers. The survey was distributed internationally to families with a baby(ies) affected by LOGBS infection. The questionnaire was designed as a collaborative effort by Group B Strep Support, its medical advisory panel members, midwives, neonatologists, parents and volunteer analysts. Data were collected from June to September in 2018. Results 531 participants responded. 252 babies (55%) made a full recovery from their LOGBS infection, 145 (32%) recovered with long term sequelae and 61 (13%) died. 126 respondents (32%) felt there was a minor to substantial impact on their child’s day to day life as a consequence of LOGBS infection. 343 respondents (69%) had not heard about GBS before their child developed LOGBS infection. 338 respondents (77%) did not receive an information leaflet on GBS. As a result of their child’s LOGBS infection, 177 respondents (39%) experienced either minor or substantial financial difficulty and 314 respondents (70%) felt that their own or a family member’s mental health was affected. 300 respondents (66%) experienced problems with planning or reduced enjoyment of subsequent pregnancies. 102 respondents (29%) reported their other children experienced difficulty due to their sibling’s LOGBS infection. Conclusions The results of our study provide a novel insight into families’ experiences following a baby affected by LOGBS infection. Study findings suggests that families suffer significant financial and psychological difficulties as a result of LOGBS infection. Furthermore, information needs are frequently being left unmet.