Support needs of couples with hereditary breast and ovarian cancer during reproductive decision making

Autor: Aad Tibben, Vivianne C. G. Tjan-Heijnen, C.E.M. de Die-Smulders, J.J.G. Gietel-Habets, Encarna B. Gomez-Garcia, R. van Golde, L.A.D.M. van Osch, I.A.P. Derks-Smeets
Přispěvatelé: RS: GROW - R4 - Reproductive and Perinatal Medicine, Klinische Genetica, MUMC+: DA KG Polikliniek (9), RS: GROW - R3 - Innovative Cancer Diagnostics & Therapy, MUMC+: MA Medische Oncologie (9), Interne Geneeskunde, Obstetrie & Gynaecologie, MUMC+: MA Medische Staf Obstetrie Gynaecologie (9), RS: CAPHRI - R6 - Promoting Health & Personalised Care, Health promotion
Rok vydání: 2018
Předmět:
0301 basic medicine
Male
PERCEPTIONS
INTENTIONS
NETHERLANDS
Decisional conflict
preimplantation genetic diagnosis (PGD)
030105 genetics & heredity
Carcinoma
Ovarian Epithelial
Conflict
Psychological
0302 clinical medicine
Pregnancy
Marriage
030219 obstetrics & reproductive medicine
BRCA mutation
WOMEN
CARRIERS
Psychiatry and Mental health
oncology
Female
Psychology
Attitude to Health
Adult
medicine.medical_specialty
Heterozygote
PREIMPLANTATION GENETIC DIAGNOSIS
Decision Making
Experimental and Cognitive Psychology
Breast Neoplasms
Preimplantation genetic diagnosis
Decision Support Techniques
reproduction
03 medical and health sciences
CHILDBEARING
medicine
cancer
Humans
ATTITUDES
PRENATAL-DIAGNOSIS
Data collection
hereditary breast and ovarian cancer (HBOC)
Social environment
Regret
Guideline
Patient Acceptance of Health Care
Focus group
Cross-Sectional Studies
Family medicine
support needs
Zdroj: Psycho-Oncology, 27(7), 1795-1801. Wiley
Psycho-Oncology, 27(7), 1795-1801
ISSN: 1099-1611
1057-9249
1795-1801
Popis: OBJECTIVE Reproductive decision making for couples with hereditary breast and ovarian cancer (HBOC) is complex and can result in decisional conflict or regret. This study investigated couples' support needs and aimed to identify vulnerable couples. Ultimately, we should strive to develop a clear standard of care guideline regarding reproductive decision support. METHODS Mixed methods were used for data collection. A focus group study was conducted among 18 couples (N = 35) with HBOC who had made a reproductive decision after reproductive counselling. Subsequently, 129 similar couples (N = 258) were invited to complete a cross-sectional survey based on the focus group study. RESULTS Clinical and practical aspects of reproductive counselling were positively evaluated in the focus group study, although couples indicated a need for additional support with emotional and social concerns in which their relationship, social environment, and the way they picture their desired family were key elements. The survey was completed by 86 participants. Making a reproductive choice was experienced as (very) difficult by 43%, and 69% showed a need for additional support during decision making. Younger participants and those who opted for a natural pregnancy experienced more difficulty with reproductive decision making, and partners showed a higher need for psychological support than carriers. CONCLUSIONS Couples with HBOC who need to make a reproductive decision have specific needs for guidance and support, of which the desired content and methods can vary. It is therefore important to identify vulnerable couples and to attune counselling to couples' needs.
Databáze: OpenAIRE
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