What deficits in sexual and reproductive health knowledge exist among women with cystic fibrosis? A systematic review

Author:
GAGE L. Ashley
Journal article citation:
Health and Social Work, 37(1), February 2012, pp.29-36.
Publisher:
Oxford University Press

The expected life span of patients with cystic fibrosis (CF) continues to rise due to advances in treatments. The rate of pregnancy for female patients with CF has also continued to rise. This review examined the literature on female patients with CF and their knowledge of sexual and reproductive health. The review explored which deficits in sexual and reproductive health knowledge existed among women with cystic fibrosis. Three broad areas of knowledge lacking in female patients with CF were identified: physiological, genetic, and psychosocial. The results suggested that female patients with CF were not equipped with adequate information for the decision-making process involved in sexual and reproductive choices. Because of social work's important role in the holistic care approach to CF and other chronic and debilitating illnesses, the authors concluded that social work literature should focus greater attention on these topics.

Extended abstract:
Author

GAGE L. Ashley;

Title

What deficit in sexual and reproductive health knowledge exists among women with cystic fibrosis? A systematic review.

Journal citation/publication details

Health and Social Work, 37(1), February 2012, pp.29-36.

Summary

The evidence for this systematic review was limited to the findings of nine studies with small sample sizes which were mostly quantitative reports of cystic fibrosis (CF) patients’ knowledge. The overall finding is that women with CF have limited knowledge of sexual and reproductive health, and perceive that they lack the information they need. The discussion focuses on the type of information needed by this patient population.  

Context

As the lifespan of women with cystic fibrosis continues to increase and the pregnancy rate in this population rises, the need for clearly communicated information on the impact of the disease on sexual and reproductive health becomes ever more important. The aim of this systematic review was to examine the question of “What deficits in sexual and reproductive health knowledge exist among women with cystic fibrosis?” in order to inform social work practice, and improve quality of care.

Methods

What sources were searched?
The electronic databases Medline/PubMed, CINAHL, and PsycINFO were searched along with Google Scholar and Google Web. The reference lists of articles meeting the inclusion criteria  were hand searched to identify additional relevant material.

What search terms/strategies were used?
Searches were conducted using the following terms: ‘women and communication and cystic fibrosis’, ‘pregnancy and cystic fibrosis’, ‘communication and fertility and cystic fibrosis’, ‘sexual health knowledge and cystic fibrosis’, and ‘reproductive health knowledge and cystic fibrosis’. There were no limits set on the date of publication. It is not clear when the searches were conducted.

What criteria were used to decide on which studies to include?
Studies had to focus on ‘information between care centre staff and female patients or patients’ deficits in knowledge’. Empirical evidence from either qualitative or quantitative studies was eligible for inclusion. Only studies published in English were selected.  

Who decided on their relevance and quality?
The selection process seems to have been carried out by the single author. A scoring system was used to assess the methodological rigour of both qualitative and quantitative studies. Details of the methods used are not presented; quality scores ranged from 8 to 11 and are described as being low.

How many studies were included and where were they from?
The database searches resulted in the identification of 2,966 articles from the Medline/PubMed search and 1,035 from the CINAHL and PsycINFO search. Eighteen articles were found to be potentially relevant, eight of which matched the inclusion criteria. One more study was retrieved from the hand search to make a total of nine studies in all. Further details of the selection process are not reported. There were four studies from the UK, two from the USA, and one each from Australia, Poland, and Sweden.

How were the study findings combined?
The findings were subjected to a thematic analysis and major trends were categorised. The results are presented under separate headings for the physiological aspects, genetic aspects, and psychosocial aspects of cystic fibrosis in relation to sexual and reproductive health issues.

Findings of the review

Six quantitative studies, focusing on testing participants’ knowledge, and three qualitative studies, reporting participants’ perceptions of the knowledge they lacked, were included in the review. Sample sizes, where available, ranged from 12 to 55.

Physiological aspects
All nine studies reported that women with CF perceive a lack of information on physiological aspects of CF on sexual and reproductive health, and scored poorly when their knowledge was assessed. Other findings included misunderstanding of: fertility information; the physiological impact of pregnancy such as the rigors of postpartum care, and; the possibility of long-term damage, and physiological decline during pregnancy. There were also reports that women with CF lacked adequate information on contraception, such as advice on malabsorption of contraceptives and possible interaction with antibiotics.

Genetic aspects
Overall, women with CF demonstrated a lack of genetic knowledge despite being aware that transmission of the CF gene was an important factor when considering pregnancy. There was also evidence that some women with CF tend to overestimate the likelihood of having a child with the disease.

Psychosocial aspects
Only three studies looked at the psychosocial aspects of CF in relation to sexual and reproductive healthy, mainly in regard to the expressed need for more information. The delivery of mainly clinical information from their care providers was seen as a source of anxiety as it highlighted CF-related complications. Expressed needs from patients included a more social view of pregnancy, more information on others’ experiences of pregnancy, and counselling during adolescence and early adulthood. 

Authors' conclusions

“With respect to the knowledge regarding sexual and reproductive behaviour, the findings in this review indicate that women with CF (cystic fibrosis) lack knowledge about physiological and psychological effects of sexual and reproductive behaviour as well as the genetics of CF.”

Implications for policy or practice

None are discussed.

Subject terms:
sex education, sexuality, social work, women, cystic fibrosis;
Content type:
systematic review
Link:
Journal home page
ISSN online:
1545-6854
ISSN print:
0360-7283

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