Reproductive decisions of parents of children with metabolic disorders

Abstract

The Interaction Model of Client Health Behavior (IMCHB) served as a guide for variable selection and instrument development for telephone interviews with 230 parents of children with metabolic disorders. Sociodemographic, psycho-affective and client-professional interaction variables were examined in relation to three outcomes: (1) receptivity to future prenatal diagnosis (56% were receptive); (2) likelihood of terminating an affected pregnancy (10% would); and (3) whether or not the parent had taken measures to prevent another affected pregnancy (41% had). All three outcomes were significantly correlated with higher scores on the Parent Stress Index, lower scores on the Vineland Adaptive Behavior Scales, fewer persons in the parent's social support network, greater worry about the living child's future and greater perceived difficulty meeting the child's extra care needs. A regression model constructed to explain taking measures to prevent a future affected pregnancy illustrated the usefulness of the IMCHB in research that involves multiple interacting variables on health outcomes. Few of the parents (7.4%) reported an interaction with a genetic counsellor, highlighting the need for practitioners from multiple disciplines to be adequately educated in principles of genetics, especially the psychological and affective aspects of counselling.

Design and Psychometric Evaluation of the Psychological Adaptation to Genetic Information Scale

“…The importance of supportive social relationships in the adaptation of clients with genetic concerns has been well established (Weil, 2000). However, surveys of satisfaction with the client-provider interaction have tended to yield positively skewed results (Hall & Dornan, 1988;Read, 2002), so alternate strategies that evaluate the process of genetic counseling should be devised (Pilnick & Dingwall, 2001). Skirton's (2001) study showed that the quality of a relationship with one's clinician is an important area of concern to a counselee, and the actual effect of that relationship on psychological adaptation could be assessed with additional items in future studies.…”

“…Skirton's (2001) study showed that the quality of a relationship with one's clinician is an important area of concern to a counselee, and the actual effect of that relationship on psychological adaptation could be assessed with additional items in future studies. However, surveys of satisfaction with the client-provider interaction have tended to yield positively skewed results (Hall & Dornan, 1988;Read, 2002), so alternate strategies that evaluate the process of genetic counseling should be devised (Pilnick & Dingwall, 2001).…”

Factors related to dietary habits and body mass index among Turkish school children: a Cox's interaction model‐based study

“…Nurse researcher Cox () developed the Interaction Model of Client Health Behavior (IMCHB), which tests health behaviours comprising several factors by handling individual differences in a systematic and comprehensive structure. The IMCHB has been used in a variety of studies on adult health behaviours such as reproductive decision‐making (Read ) and physical activity (Lee & Laffrey ). However, the IMCHB has guided fewer explanatory studies in children's health‐promotion behaviours (Farrand & Cox ) and children's diet and physical activity behaviour (Robinson & Thomas ).…”

Newborn screening for congenital heart defects: a systematic review and cost-effectiveness analysis

“…396 Parents of children with metabolic disorders, asked if they would consider screening for future pregnancies, only wished to do so in 56% of cases, but 41% had acted to prevent further affected pregnancies. 397 Only one-quarter of parents of children with cystic fibrosis actually used antenatal testing in a subsequent pregnancy. Women were more likely to accept antenatal screening for cystic fibrosis if they considered themselves to be at risk of having a child with the condition, regarded cystic fibrosis as serious and were willing to terminate a pregnancy if the fetus had cystic fibrosis.…”