Abstract
To systematically review and meta-synthesise primary qualitative research findings regarding family communication following genetic testing of cancer risk, in order to inform development of effective interventions. Systematic searches of CINAHL, Embase, Medline, British Nursing Index and PsycINFO databases were undertaken and relevant studies identified using strict criteria. The selected primary qualitative studies were appraised for quality and relevance by three independent researchers and then synthesized using a “Framework” approach. Fourteen (4.3%) studies met the inclusion criteria. The following factors influenced family communication following genetic testing for late-onset hereditary cancer: the informant’s feelings about informing relatives about genetic testing; the perceived relevance of the information to other family members and their anticipated reactions; the “closeness” of relationships within the family; family rules and patterns (e.g., who is best placed to share information with whom); finding the right time and level of disclosure; and the supportive role of heath care professionals. The themes identified in this review could provide practitioners with a useful framework for discussing family communication with those undergoing genetic testing. This framework focuses on helping health care professionals to facilitate family communication. The next step will be the development of an intervention to directly support people in talking to their relatives.
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Acknowledgements
We are very grateful to Gill Crawford at the Wessex Genetics’ Service for her input. This work is funded by a Cancer Research UK studentship (Grant Reference C8530/A6839; Lead Grant Holder: Dr Claire Foster)
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Appendix 1—Quality Assessment Tool for Qualitative Papers
Appendix 1—Quality Assessment Tool for Qualitative Papers
1. Abstract and title: Did they provide a clear description of the study?
Rating | Criteria | Score |
Good | Structured abstract with full information and clear title. | 3 points |
Fair | Fair Abstract with most of the information. | 2 points |
Poor | Inadequate abstract. | 1 point |
Very poor | No abstract. | 0 points |
2. Introduction and aims: Was there a good background and clear statement of the aims of the research?
Good | Good Full but concise background to discussion/study containing up-to date literature review and highlighting gaps in knowledge. Clear statement of aim AND objectives including research questions. | 3 points |
Fair | Some background and literature review. | 2 points |
Research questions outlined. | ||
Poor | Some background but no aim/objectives/questions, OR Aims/objectives but inadequate background. | 1 point |
Very Poor | No mention of aims/objectives. | 0 points |
No background or literature review. |
3. Method and data collection: Is the method appropriate and clearly explained?
Good | Method is appropriate and described clearly (e.g., interview guide included). Clear details of the data collection and recording. | 3 points |
Fair | Method appropriate, description could be better. Data collection described | 2 points |
Poor | Questionable whether method is appropriate. Method described inadequately. Little description of data collection. | 1 point |
Very Poor | No mention of method, AND/OR method inappropriate, AND/OR no details of data collection | 0 points |
4. Sampling: Was the sampling strategy appropriate to address the aims?
Good | Details (age/gender/race/context) of who was studied and how they were recruited. Why this group was targeted. The sample size was justified for the study. Response rates shown and explained. | 3 points |
Fair | Sample size justified. Most information given, but some missing. | 2 points |
Poor | Sampling mentioned but few descriptive details. | 1 point |
Very Poor | No details of sample. | 0 points |
5. Data analysis: Was the description of the data analysis sufficiently rigorous?
Good | Clear description of how analysis was done. Description of how themes derived/ respondent validation or triangulation. | 3 points |
Fair | Descriptive discussion of analysis. | 2 points |
Poor | Minimal details about analysis. | 1 point |
Very Poor | No discussion of analysis | 0 points |
6. Ethics, bias and rigour: Have ethical issues been addressed, and what has necessary ethical approval gained? Has the relationship between researchers and participants been adequately considered?
Good | Ethics: Where necessary issues of confidentiality, sensitivity, and consent were addressed. Bias: Researcher was reflexive and/or aware of own bias. Rigour: Attempts made to ensure the rigour of the research | 3 points |
Fair | Lip service was paid to above (i.e., these issues were acknowledged). | 2 points |
Poor | Brief mention of issues. At least, evidence that ethical approval has been sought. | 1 point |
Very Poor | No mention of issues. | 0 points |
7. Results: Is there a clear statement of the findings?
Good | Findings explicit, easy to understand, and in logical progression. Tables, if present, are explained in text. Discussion of results relate directly to aims. Sufficient data are presented to support findings. | 3 points |
Fair | Findings mentioned but more explanation could be given. Data presented in discussion relate directly to results. | 2 points |
Poor | Findings presented haphazardly, not explained, and do not progress logically from results. Qualitative data presented with stats or percentages with only limited suggestion that results were used within a qualitative paradigm. | 1 point |
Very Poor | Findings not mentioned or do not relate to aims. Qualitative data presented as stats or percentages only (e.g. 4/8, 50% participants said…..). | 0 points |
8. Transferability or generalisability: Are the findings of this study transferable (generalisability) to a wider population?
Good | Context and setting of the study is described sufficiently to allow comparison with other contexts and settings, plus high score in Question 4 (sampling). | 3 points |
Fair | Some context and setting described, but more needed to replicate or compare the study with others, PLUS fair score or higher in Question 4. | 2 points |
Poor | Minimal description of context/setting. | 1 point |
Very Poor | No description of context/setting. | 0 points |
9. Implications and usefulness: How important are these findings to policy and practice?
Good | Contributes something new and/or different in terms of understanding/insight or perspective. Suggests ideas for further research. Suggests implications for policy and/or practice. | 3 points |
Fair | Two of the above | 2 points |
Poor | Only one of the above. | 1 point |
Very Poor | None of the above. | 0 points |
10. Limitations: Are the limitations of the study discussed?
Good | Clear description of limitations with critical analysis of impact | 3 points |
Fair | Descriptive list of study limitations | 2 points |
Poor | Minimal details of study limitations | 1 point |
Very Poor | No mention of study limitations | 0 points |
11. Quotes: Are direct quotes of participants used to illustrate qualitative findings?
Good | Directs quotes used with full explanation of context and meaning and who they were made by (e.g. male, carrier). Quotes linked back to results to clearly illustrate points. | 3 points |
Fair | Direct quotes used with some explanation of meaning. | 2 points |
Poor | Minimal quotes used with little or no explanation | 1 point |
Very Poor | No quotes used. | 0 points |
12. Relevance to Systematic Review research question.
Good | Study explicitly based on family communication following GT with at least one aim to investigate factors that facilitate or impede family communication following GT. | 3 points |
Fair | Study based on experiences family communication following GT. | 2 points |
Poor | Study based on experiences of genetic testing generally which included issues/experiences of with family communication following GT | 1 point |
Very Poor | Study based on experiences of genetic testing where issues of family communication arise but were not explicitly asked about by the researcher. | 0 points |
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Chivers Seymour, K., Addington-Hall, J., Lucassen, A.M. et al. What Facilitates or Impedes Family Communication Following Genetic Testing for Cancer Risk? A Systematic Review and Meta-Synthesis of Primary Qualitative Research. J Genet Counsel 19, 330–342 (2010). https://doi.org/10.1007/s10897-010-9296-y
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DOI: https://doi.org/10.1007/s10897-010-9296-y