A qualitative study exploring genetic counsellors’ experiences of counselling children

Abstract

The identification of healthy carriers by newborn screening programmes raises questions about how and when the carrier results will be conveyed to child. There is currently a lack of information concerning how best to convey carrier information to children. This is a serious gap in the literature and practice. This study examined genetic counsellors' experiences of counselling children to explore how to support and inform children about their carrier result. Practising members of the United Kingdom (UK) Association of Genetic Nurses and Counsellors took part in semi-structured telephone interviews. Respondents described the communication process and identified barriers and facilitators of communication. Age, illness experience and maturity were variously discussed as facilitators; all of which are integral to psychological theories of children's understanding of illness. Adaptive family communication, school tuition and educational materials were also seen as influencing counselling efficacy. Relevant materials that children could keep were also seen as important to enhance children's autonomy. Yet, such resources were rare, constituting a barrier to communication. Counsellors reported communication was further impeded by maladaptive family communication and resistance from children to engaging in counselling. By exploring the facilitators and barriers inherent in communicating genetic information to children, guidance can be offered to counsellors, researchers and parents. This study indicates that some factors (eg illness experiences) previously identified by psychological theories may act in complex ways within this setting. Importantly, the factors identified as being most influential when communicating with children about genetics are amenable to change through interventions, support and training.

Genetics professionals’ experiences of facilitating parent/child communication through the genetic clinic

“…Another important finding was a subgroup of professionals who reflected upon their difficulties in providing advice to parents about disclosure to children, but also acknowledged that parents do seek disclosure advice. Similar to previous studies (Ulph et al, ), parental requests for guidance about when to tell children was felt to be a particularly difficult issue, with some participants reflecting that they struggled and gave limited advice. We identified several barriers to providing parents with disclosure support, particularly when this is related to adult‐onset conditions, such as: difficulties in assessing children's maturity, individual differences in children's coping and the uncertainty of much predictive genetic risk information, all of which were compounded when children were not known to the service.…”

“…Whilst there is much debate about the emergence versus forcing of data using a grounded inductive approach (Kelle, ), the initial analysis was undertaken without referring to the literature and was presented at two conferences, although KFK was familiar with previous studies in this field. In the later stages of analysis and writing, the literature review was updated and the findings were discussed in relation to studies on family communication about genetics (Atkinson, Featherstone, & Gregory, , Forrest Keenen et al ; Metcalfe et al, ; van den Nieuwenhoff, Mesters, Gielen, & Vries, ) and the role of genetic health professionals in this area (Derbez et al, ; Eisler et al, ; Mendes et al, ; Ulph et al, ). In addition, KFK reread the whole dataset during the writing stage to review and readjust the initial presentation of results.…”

“…Given that a key aspect of genetics healthcare is to support and encourage family communication, it is expected that genetic health professionals will have these discussions with parents (McCarthy Veach, Bartels, & Leroy, ; Mendes, Paneque, Sousa, Clarke, & Sequeiros, ). However, there can be professional uncertainty about what disclosure advice to give parents, and concerns about the ethics of sharing genetic information with affected or at‐risk children and young people (BMA ; Eisler et al, ; Ulph, Leong, Glazebrook, & Townsend, ). Furthermore, there is little specific guidance about how professionals should support parents with such disclosure decisions (Forrest et al, ; Werner‐Lin, Merrill, & Brandt, ).…”

A qualitative study to explore how professionals in the United Kingdom make decisions to test children for a sickle cell carrier status

“…9 To demonstrate competence and be the main decision maker, children should understand relevant information 10 and have the cognitive capacity and maturity to understand the implications of their decision. 9 Yet it may be challenging to determine competence when there is no clear method of assessing it 10 or age at which it develops, 1 and although some children could have the ability to make decisions, they might disengage from the counselling process 11 or struggle to verbalise a reason for their decision. 12 If children are not deemed competent, decisions can be made on their behalf.…”

“…16 Children are believed to receive tests for some autosomal recessive carrier traits, 17,18 yet few studies internationally have explored why testing is provided for some children 14,[19][20][21] but not for others, 22 how professionals navigate guidelines 20 and manage conflict with parents, 14 or how they communicate with children about testing. 11,23 Newborn screening (NBS) in England identifies around 9300 newborns with SCT annually. 24 This can prompt parents to seek testing for older children, 22 however, little is known about the childhood SCT testing processes.…”