Communication of information about reproductive and sexual health in cystic fibrosis. Patients, parents and caregivers' experience

Havermans, T.; Abbott, Janice; Colpaert, K.; Boeck, K. De

doi:10.1016/j.jcf.2011.04.001

Cited by 14 publications

(8 citation statements)

References 41 publications

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“…Consistent with the findings of other studies (Coates et al 2007;Gaff et al 2005;Havermans et al 2011;Holt 2006), all families in this study reported strong emotional response that ranged from sadness to being surprised and in shock after learning the child's condition. Learning that CAH is a lifetime condition and knowing the complications that come with it made families feel afraid and worried about the child.…”

Section: Emotional Outcomes and Impact For The Familysupporting

confidence: 91%

Communication about Congenital Adrenal Hyperplasia: Perspective of Filipino Families

Abad

Anonuevo

Daack-Hirsch

et al. 2016

Journal of Genetic Counseling

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Congenital adrenal hyperplasia (CAH), like other genetic conditions, is a relational disease from both the biological and psychosocial perspectives since the diagnosis gives rise to a variety of health, reproductive, and psychosocial implications. It is in these contexts that family communication of genetic information is important to study. Hence, this research aimed to explore genetic information communication in Filipino families affected with CAH. Using a qualitative descriptive design, families with a child affected with CAH were recruited through the CAH parent support group and were interviewed. Semi-structured interviews explored flow and content of genetic information communicated, the meanings the families attach to the communicated information, and the motivating and hindering factors in communication. Thematic analysis was used to analyze the findings. A total of five families participated, which included 11 individuals. Findings revealed that the diagnosis of CAH is not kept secret and it is openly shared with the family. The decision to communicate is influenced by several factors including the family's desire to seek further information about their family history. Initially, the focus of the communicated information is on the health implications and while communication about genetics occurs, this is almost always confined to the immediate family. The mother and grandmother serve as primary communicators in the family. The families have limited understanding of CAH especially its genetic implications including recurrence risk and carrier status. The findings can guide genetic counselors in supporting families in communicating information about CAH with the rest of the family.

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Section: Emotional Outcomes and Impact For The Familysupporting

confidence: 91%

Communication about Congenital Adrenal Hyperplasia: Perspective of Filipino Families

Abad

Anonuevo

Daack-Hirsch

et al. 2016

Journal of Genetic Counseling

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“…18 Available data suggest that women with CF lack important SRH information critical to health promotion and quality of life 6,19,20 and feel the timing and content of SRH discussions in current CF care are inadequate. 21 In addition to patient dissatisfaction, suboptimal SRH care may result in serious health implications, such as exposure to teratogenic drugs, unintended pregnancies, or hypercoagulability risks.…”

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confidence: 99%

Provider and Patient Attitudes Regarding Sexual Health in Young Women With Cystic Fibrosis

et al. 2016

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OBJECTIVE: To explore the attitudes, preferences, and experiences of patients with cystic fibrosis (CF) and CF providers toward sexual and reproductive health (SRH) care for young women with CF. METHODS:Young women with CF aged 18 to 30 years from a US CF care center and pediatric and adult CF program directors from a national sample participated in qualitative interviews investigating their experiences regarding SRH care and their attitudes and preferences toward SRH care provision in the CF setting. Interviews were audio-recorded, transcribed, and coded by using a thematic analysis approach.RESULTS: Twenty-two patient participants and 16 CF program directors were interviewed. Themes shared by both groups included the importance of SRH discussion in the CF care setting, patient and provider discomfort as a barrier to SRH care, and the need for SRH educational resources and provider training to improve SRH care. Providers highlighted the lack of standardization around SRH care in the current CF care model. Patients desired SRH educational resources coupled with early SRH discussions initiated by their CF provider. CONCLUSIONS:Both CF providers and patients agree that the CF provider has a fundamental role in providing CF-specific SRH care. Educational resources coupled with individualized SRH discussions may facilitate improved SRH care for young women with CF. Investigation into the implementation of SRH education and services into pediatric-onset chronic disease care models is needed.

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“…With the improvement of survival of people with CF and rapid growth of the adolescent and adult population, education and counselling for sexual health related issues have been included in the daily routine of CF care [61].…”

Section: Reproductionmentioning

confidence: 99%

Adult cystic fibrosis care in the 21st century

Garattini

Bilton

Cremona

et al. 2015

Monaldi Arch Chest Dis

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Cystic fibrosis (CF) is the most common autosomal recessive inherited disease of Caucasian populations. As a result of a variety of diagnostic and therapeutic strategies there has been a dramatic increase in the life expectancy of patients with CF in the last decades and 50% of patients are now adults. This review will focus on the disease in adults and the provision of appropriate care. The complex care required to improve the survival and quality of life in the adult patients can best be provided in a dedicated adult cystic fibrosis unit. These units currently exist in many European countries, but more are needed in Italy.

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Communication of information about reproductive and sexual health in cystic fibrosis. Patients, parents and caregivers' experience

Abstract: A pro-active discussion of RSH issues is proposed as a standard part of the care-pathway. A list of recommendations is given to initiate this process.

Cited by 14 publications

References 41 publications

Communication about Congenital Adrenal Hyperplasia: Perspective of Filipino Families

Communication about Congenital Adrenal Hyperplasia: Perspective of Filipino Families

Provider and Patient Attitudes Regarding Sexual Health in Young Women With Cystic Fibrosis

Adult cystic fibrosis care in the 21st century

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