Parents’ Communication with Siblings of Children Affected by an Inherited Genetic Condition

Abstract

The objective of this study was to explore parents' communication about risk with siblings of children affected by an inherited genetic condition, and to ascertain what level of support, if any, is required from health professionals. Semistructured interviews were conducted with affected and unaffected children and their parents. Families were affected by one of six genetic conditions representing different patterns of inheritance and variations in age of onset, life expectancy and impact on families. Interviews were analysed using constructivist grounded theory and informed by models which focused on three different aspects of family communication. Interviews with 33 families showed that siblings' information and support needs go largely unrecognized by health professionals and sometimes by parents. Some siblings were actively informed about the genetic condition by parents, others were left to find out and assimilate information by themselves. Siblings were given information about the current symptoms and management of the genetic condition but were less likely to know about its hereditary nature and their own potential risk. When siblings were fully informed about the condition and included in family discussion, they had a better understanding of their role within their family, and family relationships were reported to be more harmonious. The information and support needs of siblings can be overlooked. Parents with the responsibility for caring for a child affected by a genetic condition may require support from health professionals to understand and respond to their unaffected children's need for more information about the genetic condition and its implications for the children's own future health and reproductive decision-making.

The Process of Disclosure: Mothers’ Experiences of Communicating X‐Linked Carrier Risk Information to At‐Risk Daughters

“…Children who receive genetic risk information gradually and appropriately from a young age tend to find it less shocking and are able to cope and adapt to the information well by assimilating it into their self-identity as they grow up (Metcalfe et al 2011, 2008; Plumridge et al 2011). Following a meta-thematic synthesis of research into family communication of genetic risk information, Rowland and Metcalfe (2013) recommended that parents should disclose genetic risk information in an open and honest manner, at developmentally appropriate stages, gradually, throughout childhood and adolescence, whilst acknowledging and addressing their child’s emotions.…”

“…Following a meta-thematic synthesis of research into family communication of genetic risk information, Rowland and Metcalfe (2013) recommended that parents should disclose genetic risk information in an open and honest manner, at developmentally appropriate stages, gradually, throughout childhood and adolescence, whilst acknowledging and addressing their child’s emotions. Establishing an open and honest dialogue between the parent and child at an early stage makes it more likely the child will feel confident to approach their parent when questions arise, rather than them independently accessing potentially less accurate and worrying sources (Metcalfe et al 2011, 2008; Plumridge et al 2011). …”

“…Plumridge et al (2011) examined parental communication with siblings of children affected by one of six genetic conditions, inherited in various ways (including DMD), and found that conversations tended to focus around the health implications rather than the genetic risk. Disclosure of genetic risk information to children is a daunting task for many parents, who report feeling unsupported and ill-equipped (Metcalfe et al 2008, 2011; Rowland and Metcalfe 2013).…”

“…Parents often feel conflicted, weighing the need to provide valuable genetic information against the desire to protect their child from potential harm (Gaff et al 2007). Stress, guilt and fear are prominent emotions and contribute to delayed, avoided or incomplete disclosure (Forrest Keenan et al 2009; Metcalfe et al 2011; Plumridge et al 2011). Parents also deliberate over the optimal time for disclosure, concerned that they may harm their child by telling them information too early or too late, so they will often wait for their child to ask questions, which can result in delayed disclosure (Etchegary and Fowler 2008; Forrest Keenan et al 2009; Metcalfe et al 2008, 2011).…”

“…Although children and their parents tend to agree that the initial disclosure should be by the parents, who know the child best, they felt that this should be with the support and advice of health professionals (Forrest et al 2008; McConkie-Rosell et al 2009; Metcalfe et al 2008; 2011; Plumridge et al 2010, 2011). An international workshop on ‘Facilitating family adjustment to a diagnosis of Duchenne muscular dystrophy’ recommended that health care professionals should proactively encourage parents to discuss the condition with their children and ensure they are available to provide help and guidance for parents during the process (Poysky and Kinnett 2009).…”