Karen Forrest Keenan

The analysis of qualitative research data in family planning and reproductive health care

This is the third in a series of four papers on the use of qualitative methods in family planning and reproductive health care research. The first paper outlined the three main methods used in qualitative studies and the second explored how we can assess the ‘quality’ of qualitative research. This paper addresses issues related to the analysis of qualitative data. It begins by discussing the nature of qualitative data and its management followed by an outline of the main theoretical assumption pertaining to its analysis that of ‘coding up’ (versus ‘coding down’). Next we describe some of the major approaches to qualitative data analysis and discuss why you may choose one approach over another. The paper ends by highlighting some general issues in qualitative data analysis. (authors)

The quality of qualitative research in family planning and reproductive health care

In recent years the value of using qualitative methods in health and social care research has become widely acknowledged. This paper explores how we can assess the ‘quality’ of qualitative research. It is the second of three papers examining the use of qualitative research in family planning and reproductive health care. Our first paper described the three main methods that are generally used in qualitative studies. This paper begins with a discussion about when to use qualitative methods followed by a consideration of some general issues that arise throughout the process of qualitative data collection and analysis. The paper ends by highlighting the strengths and weaknesses of qualitative research methods. (excerpt)Journal of Family Planning and Reproductive Health Care 2004: 30(4) Introduction In recent years the value of using qualitative methods in health and social care research has become widely acknowledged.1,2 This paper explores how we can assess the ‘quality’ of qualitative research. It is the second of three papers examining the use of qualitative research in family planning and reproductive health care. Our first paper described the three main methods that are generally used in qualitative studies.3 This paper begins with a discussion about when to use qualitative methods followed by a consideration of some general issues that arise throughout the process of qualitative data collection and analysis. The paper ends by highlighting the strengths and weaknesses of qualitative research methods.

Writing up and presenting qualitative research in family planning and reproductive health care

This is the authors final draft of the paper published as Journal of Family Planning and Reproductive Health Care, 2005, 31(2), pp.132-135. The published paper is available via http://www.ffprhc.org.uk/

How Do Partners Find out About the Risk of Huntington’s Disease in Couple Relationships?

Whilst a growing body of work has explored family communication about Huntington’s disease and how at-risk individuals learn about their risk, the experience of telling a partner and partners’ experiences of finding out about this potentially devastating hereditary illness have received little attention. This study describes the experiences of partners in finding out about Huntington’s disease and any impact on couple’s relationships/marriages. We undertook a thematic analysis of qualitative interviews which explored the dynamics of partners’ marriages after predictive testing and partners’ views of genetic counseling. A main theme from partners’ accounts was how they found out about their spouse’s risk of Huntington’s disease and the impact this had on marital relations. The analysis revealed four types of disclosure experiences: (1) marital secrets; (2) alerting, but not telling; (3) knowing and seeing; (4) marital ignorance. Our findings demonstrate that partners’ experiences of (non)disclosure about the risk of HD within marriages is an important factor which contributes to couples’ coping or marital problems. Exploring how spouses found out about their partner’s risk of HD will illuminate issues about a couple’s past and future patterns of communication and their coping strategies. A practical and ethical implication is the extent to which genetic counselors should inform partners about the course and nature of Huntington’s disease when a partner is the support person for the individual being tested.

Parents' views of genetic testing and treatment of familial hypercholesterolemia in children: A qualitative study Journal of Community Genetics

Familial hypercholesterolemia (FH) is a serious inherited disorder, which greatly increases individuals’ risk of cardiovascular disease (CVD) in adult life. However, medical treatment and lifestyle adjustments can fully restore life expectancy. Whilst European guidance advises that where there is a known family mutation genetic testing is undertaken in early childhood, the majority of the at-risk population remain untested and undiagnosed. To date, only a small number of studies have explored parents’ and children’s experiences of testing and treatment for FH, and little is known about interactions between health professionals, parents, and children in clinic settings. In this study, in-depth interviews were undertaken with parents who had attended a genetics and/or lipid clinic for FH with their children (n = 17). A thematic analysis revealed four main themes: undertaking early prevention, postponing treatment, parental concerns, and the importance of the wider family context. The majority of parents supported genetic testing for FH in childhood. However, although some were very supportive of following early treatment recommendations, others expressed reluctance. Importantly, some parents were concerned that inappropriate information had been shared with their children and wished that more time had been given to discuss how, when, and what to tell in advance. Future research is needed to explore the long-term outcomes for children who undertake genetic testing and early treatment for FH and to trial interventions to improve the engagement, follow-up, and support of children who are at risk, or diagnosed, with this disorder.