Abstract
IntroductionFactors that affect public and professionals' attitudes towards the collection and linkage of health and other data have been explored in the literature. Thus far there has been no study exploring attitudes towards the collection of child maltreatment data. ObjectivesOur aim is to explore attitudes regarding the collection and linkage of maltreatment data for research. MethodsParticipants included younger mothers, older mothers, care-experienced young people, and professionals who were responsible for recording child maltreatment data. Four face-to-face focus groups were conducted, one with younger mothers (n = 6), one with older mothers (n = 10), and two with care-experienced young people (n = 6 and n = 5). An online focus group was conducted with professionals (n = 10), two of whom additionally participated in telephone interviews. Transcribed audio-recorded data were inductively coded, a portion were double-coded by a second researcher, and thematically analysed. ResultsThree major themes were identified. The first concerned issues of consent, specifically the conditions for providing consent and factors influencing this. The second concerned trust in data security and validity, the organisations and individuals providing and using the data, and how the information provided shapes attitudes. The third theme explored the benefits of research and the researchers' role in child protection. Participants wanted the choice of providing consent for data collection, especially when consenting on behalf of another, but there were concerns that maltreated children were unidentifiable in anonymised datasets. Care-experienced young people were concerned about data collection from Social Services records due to their sensitivity. There was a general lack of understanding about how research data is viewed and the accuracy of records. ConclusionsNovel findings in the study were strongly related to the sensitive nature of the topic. The findings may be particularly useful when designing research studies and participant materials and a co-productive approach to this should be taken.
Highlights
Factors that affect public and professionals’ attitudes towards the collection and linkage of health and other data have been explored in the literature
The aim of this study is to explore attitudes towards the collection and linkage of child maltreatment data for research
Age was collected for the mothers and care-experienced young people groups and these ranged from 16–45 years old
Summary
Factors that affect public and professionals’ attitudes towards the collection and linkage of health and other data have been explored in the literature. Excluding potential participants due to lack of consent can introduce consent bias [1, 2] i.e. those who consent may be in some way different to those who do not [1]. This may threaten the validity of research results [2]. The use of opt-out consent models are becoming more widespread [4], partly as a response to difficulties in seeking consent These models have some drawbacks including massrefusal to participate if there is lack of trust [5]. Researchers cannot be certain if individuals have received the communication informing them of the option to opt out [6]
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