Current good practice guidelines identify the need to consider the entire family when working with families with a PCI.2 However there is little guidance globally as to how this should be implemented with siblings.2,3 This synthesis points to several areas for clinical intervention, including early intervention strategies and recommendations for therapists.
The findings emphasise siblings’ desire and ability to conceal their needs and emotions. Consequently, sharing the findings from this review with siblings, parents and professionals would help them to be mindful of their needs and monitor the levels of communication or avenues for support available to the sibling. It may be that broader systems need to be involved, for example social services, in order for parents to have the necessary level of resources to support both children.
Siblings should have access to a health professional to have their questions regarding the disease answered, which may reduce anxiety regarding treatments and their uncertainties about the future. Age appropriate leaflets could also normalise the experience for the family. Where possible, families should be encouraged to speak together about the illness with siblings and allow them a forum to express their concerns and help them understand and to feel heard and included. Keeping channels of communication open would also allow parents to problem solve when necessary. Support groups and other positive events, for example charity work or sibling days 24 were also found to be helpful but were often too far away for siblings to access regularly. It may be that more online resources and ways of communicating could be developed and encouraged, e.g. sibling forums, buddy systems or websites such as www.sibs.org.uk.
Whilst siblings are proficient at creating a positive prosocial identity, their ability to identify other positive self-attributes are lower than siblings of healthy children.16 Consequently families and professionals should liaise to ensure that siblings have space and support to develop a positive identity outside of the caring role. At home this could be implemented by ensuring that children are encouraged to have interests and their independent achievements are recognised. More broadly this could be supported by actions to reduce negative reactions
within the general population, possibly due to a lack of understanding. This could involve providing education days at school about chronic illnesses.
Last, it may be necessary for therapists to be involved in the care of the family or the sibling. The limited amount of current guidance recommends a systemic approach to care, which would fit with family therapy or systemically informed therapy.23 Initial steps to share systemic formulations with families and professionals would identify family dynamics, elucidate siblings’ position in the system and highlight potential problems and solutions. The benefits of further therapy in this approach would be providing a space for the family to communicate and promote cohesion rather than isolation, whilst identifying the specific needs of the sibling. Narrative therapy could be used with the sibling to broaden alternative stories about their identity and help them construct a fuller positive narrative about
themselves independent of illness.23,65 Equally cognitive behavioural therapy 66 could be utilised to incorporate more accommodating coping strategies e.g. positive thinking, 62 or help siblings to challenge the core beliefs about themselves (e.g. I am only worthwhile if I help others) that could continue into adulthood.
Potential Limitations of the Study
As a qualitative article the findings do not aim to be valid, reliable and generalisable, as in quantitative research, but provide insight into the experiences of a specific group, which may stimulate new ways of thinking. Consequently it is important to acknowledge the
characteristics of the articles, and who they represent, in order for the reader to consider the influence of context on the findings. Some of these have been documented in Table 3. Whilst the synthesis represents the voices of siblings the sample is small and therefore only includes a small range of cultures, disease types, potential age ranges of siblings and research quality. For example, the sample is predominantly of Western cultures and health systems i.e.UK,
America, Canada and Sweden. The small sample also means that a narrow range of diseases are represented. The only diseases to be present in multiple papers are paediatric diabetes and cystic fibrosis. Ten of the papers also focussed on one particular disease rather than multiple similar diseases which further restrained the range of diseases represented. The inclusion and exclusion criteria have also influenced the range of diseases represented. In particular three types of studies were excluded. These were studies that 1) represent very specific experiences e.g. illness specific procedures; 2) could be potentially treatable e.g. paediatric cancer and 3) related to physical injury e.g. head trauma. In addition, the studies often fail to identify the age of the unwell sibling or the current stage of their prognosis.
The small final sample may also be impacted by the researchers in the field. For example it may be that researchers lack the resources to investigate or that they prefer utilising a quantitative methodology to explore the phenomena that families experience. The latter is potentially supported by the frequent presence of mixed methodologies and the relatively low quality of the sample (i.e. a sample CASP mean of 18.9 out of 30 and range of 13- 23.5). Furthermore, when using Kearney’s typology and application criteria studies were often found to be descriptive, whereby data is placed into categories with little explicit analysis. Consequently this synthesis has highlighted the need for more qualitative research of healthy siblings’ experience and of a higher quality. Future research might focus on how culture may influence family dynamics including elements of communication, narratives regarding illness and gender roles.