The experiences of siblings of children with chronic illness of health-related communication directed at them: a systematic review protocol and thematic synthesis of qualitative studies

Introduction

Chronic illness is a long-term medical condition that is incurable including a wide range of health conditions such as communicable diseases, non-communicable disease and mental health disorders. With technological advancement of medicine today children with chronic illness are living longer (Wijlaars et al., 2016). Internationally the exact number of children living with a chronic illness is unknown due to the diversity in definitions used. To provide an example New Zealand has detailed 10% of their young people to have a chronic illness that has been found to have a profound effect on the children’s lives (Sligo et al. 2019).

The impact of chronic illness on the child is well documented throughout the literature (Knecht et al., 2015). Research to date is focused mostly on the young people’s experience of living with a chronic illness or the experience of parents of a child with a chronic illness (Alkan et al., 2017; Barlow & Ellard, 2006; Blackwell et al., 2019; Carter et al., 2015; Ferro & Boyle, 2015; Kim et al., 2019; Monaghan & Gabe, 2015). Families may experience changes in roles and routines with increased attention often required for the child who is ill (Hilario, 2021). Siblings of children with a chronic illness experience family disruption and often negative consequences such as loneliness due to a perceived lack of parental time, anxiety, depression, separation anxiety, jealousy of siblings (Barlow & Ellard, 2006; Havill et al., 2019; Haukeland et al., 2015; Knecht et al., 2015; O'Brien et al., 2009). Siblings of children with chronic illness are also at risk of difficulties in school due to post traumatic stress with higher levels of absenteeism and poor academic outcomes (Gan et al., 2017). Siblings of children with a chronic illness are in a vulnerable position as there may be a low parental awareness of the impact on the ‘healthy’ sibling (Dinleyici et al., 2020; Hilkner et al., 2019).

Health literacy is defined as “the degree to which the individual has the ability to find, understand and use information and services to inform health-related decisions and actions” (CDC, 2020). Parental perspectives and in particular the impact of low health literacy of parents on children has received attention (DeWalt et al., 2007; Harrington et al., 2015; Morrison et al., 2013; Pulgorón et al., 2014; Ricardo et al., 2018). A mixed-method study in Chicago investigated parents’ health literacy level found 56% of parents (n=50) had low health literacy (May et al., 2018). This research builds on previous findings from Morrison et al. (2013) who found that approximately one in three parents of children presenting to the emergency department had low health literacy. It has long been identified that those children whose parents have low health literacy have poorer health outcomes than those who have adequate health literacy (DeWalt & Hink, 2009). The impact of parent’s low health literacy levels on sibling’s experience of health-related communication and knowledge is unknown.

Health-related communication is put simply by Lasswell (1948); ‘Who? says what? through which channel? to whom? with what effect?’. More recently in the 1980’s and 1990’s health-related communication refers to health education and promotion, interpersonal and organisational communication as well as community focused communication and mass media influence. Effective health-related communication must be tailored to the target audience, take into consideration specific context and different perspectives (Gallois et al., 2015). Experiences of siblings of children with chronic illness are often derived from research with parents (Deavin et al., 2018; Knecht et al., 2015; Monaghan & Gabe, 2015). Over a decade ago research with a focus on siblings of children with cancer found a need for health literacy interventions, as siblings lacked open and honest communication within the family, adequate information about the child’s cancer and they required support psychologically and socially to maintain their own interests (Wilkins & Woodgate, 2005). A recent integrative review completed by Mandleco & Webb (2015) highlighted that siblings learn about autism spectrum disorder from parents and when they wanted to know more about the condition they depended on their parents as the main source who were in some cases not forthcoming with the information. Mandleco & Webb (2015) calls for an improvement in sibling knowledge of the conditions in an age-appropriate manner. Havill et al. (2019) completed a synthesis research study in which it found that siblings often receive incomplete information and resolve to constructing their own rationalizations, which includes self-blame and anxiety provocation. Specific areas the siblings lacked information included sibling’s genetic condition, prognosis and genetic implications, which resulted in siblings seeking information from alternative resources such as the internet. Another key finding from the Havill et al. (2019) synthesis was that even in instances where siblings did receive enough information they frequently lacked understanding. Thus, communication strategies require attention, which this protocol proposes. Mohr & Nevin (1990) defines communication strategies as frequency (the amount of communication), direction (flow of information), modality (method and variety of ways to transmit the message) and content (information that is delivered). A recent systematic review aimed to scope current interpretations of health literacy in childhood and youth (Bröder et al., 2017). Following on from this review Okan et al. (2018) evaluated generic health literacy instruments used in children and adolescents and found a total of 15 tools available. The youngest age group that these instruments targeted was 7 years old, which was within a parent-child study, one instrument was used in primary school aged children, and none were located for the early years age cohort. Seven instruments were performance based, seven self-reporting and one utilized a mixed-method measurement. This is in stark contrast to the nearly 100 health literacy tools available for adults. Whilst this review was undertaken within the child health literacy context it does not focus on the sibling experience of health-related communication. As siblings are often not the centre of attention by health care professionals and for obvious reasons not the parents of a child with chronic illness, health-related communication may be lacking. Resulting in a potential suboptimal understanding. This study proposes to synthesise the research evidence reporting on the experiences of siblings of children with chronic illness of health-related communication.

Methods

We have used the Preferred Reporting Items for Systematic reviews and Meta-Analyses for Protocols (PRISMA-P) checklist to frame this protocol (Coveney et al., 2023). The review is registered with the International Prospective Register of Systematic Review (PROSPERO) (393998, 03^rd February 2023).