This systematic review was conducted and reported in accordance with guidelines outlined by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement (Moher, Liberati, Tetzlaff & Altman, 2009).
2.2.1 Search Strategy
Eligible papers for inclusion in this review were identified through searches of the following electronic databases in March 2015: PsycINFO (1597-March 2015); Medline (1946-March 2015); PubMed (1940s-March 2015); Scopus (1966-March 2015); Web of Science (1900-March 2015); and CINAHL (1937-(1900-March 2015). Search terms using both controlled vocabulary from databases (e.g. Medical Subject Headings [MeSH]) and free text words, were used in various combinations as displayed in Table 2.1. No limiters were applied. Ancestry searching was also engaged in (i.e. a manual search of bibliographies was conducted for (i) all studies deemed eligible for inclusion and (ii) any relevant review papers identified).
Table 2.1: Systematic Review: Search Terms and Strategy
Key Search Terms Search Strategy
Epilepsy • Epilepsy OR epilept* OR epileps* OR epilepsies OR seizure disorder OR seizure condition
AND
• Family OR familie* OR parent* OR father* OR mother* OR caregiver* OR stepparent* OR child* OR infant* OR adolescen* OR teen* OR young* OR young person*
AND
• Disclosure OR disclos* OR tell* OR talk* OR letting know OR informing OR conversat* OR conversing OR self-disclosure OR truth disclosure OR information disclosure OR duty to warn OR parental notification OR health communication OR mandatory reporting OR public disclosure OR diagnosis disclosure OR conceal*
Family, Parent, Child
Disclosure
2.2.2 Study Selection Criteria
Prior to commencing the search strategy, inclusion and exclusion criteria were specified for types of studies, types of participants, and types of outcomes. All types of research designs were considered across quantitative, qualitative and mixed-method paradigms. Peer-reviewed publications of English language studies comprising original research were considered for
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inclusion provided they addressed one or more objectives of the review. Editorials, books, book chapters, commentaries, dissertations, and review papers were excluded.
Studies with children/young people aged 0-18 years of any sex with epilepsy of any type (idiopathic, cryptogenic and/or symptomatic) were deemed eligible for inclusion. Manuscripts were excluded if they combined results for adults (18 years+) and children with no delineation of child-specific or adult-specific findings. Any studies examining the disclosure behaviours of parents of CWE (aged 0-18 years) were also included.
In terms of study outcomes, any studies (a) that explicitly examined disclosure of an epilepsy diagnosis from child and/or parent perspectives (self- and/or proxy-reported) as the primary focus of the study, (b) that examined disclosure of an epilepsy diagnosis from child and/or parent perspectives (self- and/or proxy-reported) as a sub-focus of a larger study, or (c) where findings pertaining to disclosure of an epilepsy diagnosis from child and/or parent perspectives (self- and/or proxy-reported) emerged as an incidental theme or sub-theme, were included.
For the purposes of this review (and indeed for the present study in its entirety) the following definition of disclosure of a CSI was employed: “the verbal communication that occurs between a discloser and an interaction partner regarding the discloser’s possession of a concealable stigmatized identity” (Chaudoir & Fisher, 2010, p. 241). Alongside this definition, which emphasises the verbal components of a communication encounter, cognisance was also given to non-verbal communication behaviours that might have acted as the initial stimulus to CWE or parents revealing the child’s epilepsy diagnosis (e.g. the potential for unplanned revelations via others witnessing seizures or medication administration). For the purposes of this review and throughout this thesis, the interaction partner refers only to individuals outside of the nuclear/immediate family context of the CWE (where the nuclear/immediate family is defined as the family group consisting of the CWE and his/her parent(s) and sibling(s)).
2.2.3 Methods of the Review
Drawing on the study selection criteria, a two-stage screening process was undertaken to identify studies eligible for inclusion in the review. Stage one involved two reviewers screening the titles and abstracts of all the retrieved evidence from the electronic searches for relevance.
Stage two involved retrieval of the full-texts of studies deemed eligible for inclusion in the review. These texts were independently read in-full by two reviewers against the inclusion criteria before a final decision regarding inclusion was confirmed. The reasons for excluding studies at this stage were noted (see Figure 2.1). Bibliographies of all studies deemed eligible for inclusion and relevant review papers were also manually screened. For all stages of the screening process, discrepancies were resolved through discussion with two further reviewers.
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The following methodological information was extracted for each study: author, year, and country of origin; overall study aim/objective; study design; data collection method; sample;
and details of any pre-existing instruments for quantifying disclosure (if applicable) (see Appendix A). To capture key findings pertaining to the existing evidence available on epilepsy disclosure by CWE and their parents the following data were extracted; how disclosure findings emerged (i.e. primary focus of the study, sub-focus of a larger study or incidental emergent theme/sub-theme); disclosure behaviours of CWE and their parents; enablers for disclosure;
barriers to disclosure; disclosure impact and/or consequences; and any identified relationship between disclosure management and other demographic, clinical or psychosocial variables (see Appendix B). All data were extracted independently by two reviewers and cross-checked by two further reviewers for accuracy, with any discrepancies resolved through discussion.
The data were synthesised narratively. Because of the heterogeneity of the study designs and instruments employed to capture disclosure experiences of CWE and their parents, meta-analysis or meta-synthesis of the data was not possible.
2.2.5 Quality Assessment
The quality of the studies was assessed using two different quality appraisal tools in order to account for the different research designs. The manuscripts were assessed for quality using: 1) a modified version of a quality appraisal tool developed by Tsimicalis, Stinson & Stevens (2005) for quantitative and mixed methods papers; and 2) the critical appraisal skills programme (CASP) appraisal tool (1998) for qualitative papers. Tsimicalis et al.’s quality appraisal tool (2005) involves the assessment of five study parameters: 1) study design; 2) participants and recruitment; 3) comparison group; 4) number of participants; and 5) QOL instruments. For the purposes of this review, item five pertaining to instruments measuring QOL was adapted to pertain to instruments where the disclosure behaviours of CWE and/or their parents were assessed. Each parameter is assessed based on ratings from 0-3. Thus, the tool yields an overall methodological quality score ranging from 0 to 15 for each study, with higher scores indicative of more robust methodological quality. The CASP appraisal tool (1998) is a 10-item checklist that facilitates researchers in reporting on the methodological quality of a number of components of qualitative studies including methodological appropriateness, sample, data collection, data analysis, and findings. Employment of the CASP appraisal tool (1998) involves reviewers choosing one of the three following options to indicate whether items on the checklist have been addressed within a study (as highlighted by the research paper) or not: 1) Yes; 2) No;
and 3) Can’t Tell. Two reviewers independently conducted the quality appraisal, which was cross-checked by a third reviewer, with discussion to reach consensus on any discrepancies.
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