Family Planning Decisional Needs Assessment for Recessive Hereditary Disorders: Insights from Carrier Couples and Professionals

Family Planning Decisional Needs Assessment for Recessive Hereditary Disorders: Insights from Carrier Couples and Professionals

Family Planning Decisional Needs Assessment for Recessive Hereditary Disorders: Insights from Carrier Couples and Professionals

Family Planning Decisional Needs Assessment for Recessive Hereditary Disorders: Insights from Carrier Couples and Professionalss

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Référence bibliographique [22144]

Frigon, Marie-Pier, Lavoie, Mélissa, Emond, Marie-Josée, Bouchard, Luigi, Poitras, Marie-Ève et Tremblay, Karine. 2022. «Family Planning Decisional Needs Assessment for Recessive Hereditary Disorders: Insights from Carrier Couples and Professionals ». Patient Education and Counseling, vol. 105, no 7, p. 2537-2545.

Fiche synthèse

1. Objectifs


Intentions :
«[T]he aim of this study was to describe the decisional needs of carrier couples of one of the four hereditary disorders according to carrier couples and professionals involved in SDM [shared decision-making].» (p. 2538)

2. Méthode


Échantillon/Matériau :
This «research was conducted among carrier couples and professionals involved in the family planning decision-making process using a qualitative descriptive design.» (p. 2538) Participants had to have «parents or grandparents who were born in the SLSJ [Saguenay–Lac-Saint-Jean] or Charlevoix regions (Quebec, Canada).» (p. 2538) «In total, 39 carriers (17 couples and 5 women whose partners chose not to participate), and 11 health and social care professionals and a social organization representative participated […].» (p. 2539)

Instruments :
Guide d’entretien semi-directif

Type de traitement des données :
Analyse de contenu

3. Résumé


The «results suggest that family planning decision-making can be a deliberative and complex process influenced by values, preferences, opinions of others, past experiences, and available resources. This is consistent with the literature exploring reproductive choices of carrier couples. One important finding of this study was that family planning decision-making process was perceived to be a difficult decision for some participants. Of particular interest, disease characteristics, such as morbidity and mortality, seemed to be associated with decisional conflict. […] This study also highlights the dynamic nature of carrier couples’ decision-making process. Family planning is a process that can take place over several years and the decision-making process regarding reproductive choices should be re-evaluated throughout the whole reproductive period […].» (p. 2542) Also, the «results suggest that, although genetic counselors are known to be the main source of information and support providers for carrier couples, other actors are involved in their decision-making process as well. In fact, obstetricians, family physicians, nurses, pediatricians, social workers, professionals from specialized clinics and social organization members were all considered to be an important support in the decision-making process.» (p. 2543)