The Perceived Impact of Children s Risk Status for Hypertrophic Cardiomyopathy on Families: an Exploratory Study
| Status: | Completed |
|---|---|
| Conditions: | Peripheral Vascular Disease, Cardiology, Orthopedic |
| Therapuetic Areas: | Cardiology / Vascular Diseases, Orthopedics / Podiatry |
| Healthy: | No |
| Age Range: | 13 - Any |
| Updated: | 3/27/2019 |
| Start Date: | June 24, 2010 |
| End Date: | August 2, 2017 |
The Perceived Impact of Children s Risk Status for Hypertrophic Cardiomyopathy on Families: An Exploratory Study
This study proposes to describe how children s hypertrophic cardiomyopathy (HCM) risk status
affects family functioning, behaviors, and relationships. HCM is the most common inherited
cardiovascular single-gene disorder. Individuals with HCM may experience shortness of breath,
chest pain, palpitations, dizziness, syncope, heart failure, and arrhythmias predisposing to
sudden cardiac death at any age. Notably, HCM is the most common cause of sudden cardiac
death in people under 30 years of age. Genetic testing can identify at-risk individuals;
however, the impact of potentially life-altering genetic information on families remains
largely unexplored. Increasingly, health care providers are providing the testing in children
for conditions like HCM that are life-threatening and medically manageable without the
benefit of understanding the psychological consequences. The few studies that have been
conducted suggest that genetic testing in children may result in changes to family
relationships, parental emotional wellbeing, parenting behaviors, and child functioning in a
subset of children. One synthesis of these studies suggests that children as a group show
little evidence for maladjustment to risk information, but that parents are affected by the
carrier status of their children. The proposed study intends to further this body of
knowledge by exploring the impact of children s risk status on families with HCM. Health care
providers and researchers can inform their work with HCM families by better understanding the
potential impact of genetic risk as an important component of families adaptation to the
life-threatening information about their children. The families targeted for this exploratory
study will be purposively sampled from those that have been aware of the children s risk
status or not at-risk status for HCM for at least 3 months. The cross-sectional design is
composed of semi-structured interviews with a parent and, separately, with his/her 13 to 23
year-old child who is either a carrier for HCM, a non-carrier, or at 50% risk for being a
carrier. The interview will target issues related to the perceived impact of the child s risk
status on family functioning, parenting behaviors and relationships. Data from the
parent-child dyads will be analyzed for concordance/discordance along parallel themes. The
results of this study may facilitate the understanding of the perceived impact of learning
children s HCM risk status, which will inform both clinical care and future research.
Importantly, since predictive testing in children for adult-onset diseases is generally
discouraged, very little is actually known about its impact on families. Therefore, the study
of this unique subgroup of an HCM population that uses clinically indicated predictive
testing in childhood offers a preliminary opportunity to learn about predictive testing of
minors.
affects family functioning, behaviors, and relationships. HCM is the most common inherited
cardiovascular single-gene disorder. Individuals with HCM may experience shortness of breath,
chest pain, palpitations, dizziness, syncope, heart failure, and arrhythmias predisposing to
sudden cardiac death at any age. Notably, HCM is the most common cause of sudden cardiac
death in people under 30 years of age. Genetic testing can identify at-risk individuals;
however, the impact of potentially life-altering genetic information on families remains
largely unexplored. Increasingly, health care providers are providing the testing in children
for conditions like HCM that are life-threatening and medically manageable without the
benefit of understanding the psychological consequences. The few studies that have been
conducted suggest that genetic testing in children may result in changes to family
relationships, parental emotional wellbeing, parenting behaviors, and child functioning in a
subset of children. One synthesis of these studies suggests that children as a group show
little evidence for maladjustment to risk information, but that parents are affected by the
carrier status of their children. The proposed study intends to further this body of
knowledge by exploring the impact of children s risk status on families with HCM. Health care
providers and researchers can inform their work with HCM families by better understanding the
potential impact of genetic risk as an important component of families adaptation to the
life-threatening information about their children. The families targeted for this exploratory
study will be purposively sampled from those that have been aware of the children s risk
status or not at-risk status for HCM for at least 3 months. The cross-sectional design is
composed of semi-structured interviews with a parent and, separately, with his/her 13 to 23
year-old child who is either a carrier for HCM, a non-carrier, or at 50% risk for being a
carrier. The interview will target issues related to the perceived impact of the child s risk
status on family functioning, parenting behaviors and relationships. Data from the
parent-child dyads will be analyzed for concordance/discordance along parallel themes. The
results of this study may facilitate the understanding of the perceived impact of learning
children s HCM risk status, which will inform both clinical care and future research.
Importantly, since predictive testing in children for adult-onset diseases is generally
discouraged, very little is actually known about its impact on families. Therefore, the study
of this unique subgroup of an HCM population that uses clinically indicated predictive
testing in childhood offers a preliminary opportunity to learn about predictive testing of
minors.
This study proposes to describe how children s hypertrophic cardiomyopathy (HCM) risk status
affects family functioning, behaviors, and relationships. HCM is the most common inherited
cardiovascular single-gene disorder. Individuals with HCM may experience shortness of breath,
chest pain, palpitations, dizziness, syncope, heart failure, and arrhythmias predisposing to
sudden cardiac death at any age. Notably, HCM is the most common cause of sudden cardiac
death in people under 30 years of age. Genetic testing can identify at-risk individuals;
however, the impact of potentially life-altering genetic information on families remains
largely unexplored. Increasingly, health care providers are providing the testing in children
for conditions like HCM that are life-threatening and medically manageable without the
benefit of understanding the psychological consequences. The few studies that have been
conducted suggest that genetic testing in children may result in changes to family
relationships, parental emotional wellbeing, parenting behaviors, and child functioning in a
subset of children. One synthesis of these studies suggests that children as a group show
little evidence for maladjustment to risk information, but that parents are affected by the
carrier status of their children. The proposed study intends to further this body of
knowledge by exploring the impact of children s risk status on families with HCM. Health care
providers and researchers can inform their work with HCM families by better understanding the
potential impact of genetic risk as an important component of families adaptation to the
life-threatening information about their children. The families targeted for this exploratory
study will be purposively sampled from those that have been aware of the children s risk
status or not at-risk status for HCM for at least 3 months. The cross-sectional design is
composed of semi-structured interviews with a parent and, separately, with his/her 13 to 23
year-old child who is either a carrier for HCM, a non-carrier, or at 50% risk for being a
carrier. The interview will target issues related to the perceived impact of the child s risk
status on family functioning, parenting behaviors and relationships. Data from the
parent-child dyads will be analyzed for concordance/discordance along parallel themes. The
results of this study may facilitate the understanding of the perceived impact of learning
children s HCM risk status, which will inform both clinical care and future research.
Importantly, since predictive testing in children for adult-onset diseases is generally
discouraged, very little is actually known about its impact on families. Therefore, the study
of this unique subgroup of an HCM population that uses clinically indicated predictive
testing in childhood offers a preliminary opportunity to learn about predictive testing of
minors.
affects family functioning, behaviors, and relationships. HCM is the most common inherited
cardiovascular single-gene disorder. Individuals with HCM may experience shortness of breath,
chest pain, palpitations, dizziness, syncope, heart failure, and arrhythmias predisposing to
sudden cardiac death at any age. Notably, HCM is the most common cause of sudden cardiac
death in people under 30 years of age. Genetic testing can identify at-risk individuals;
however, the impact of potentially life-altering genetic information on families remains
largely unexplored. Increasingly, health care providers are providing the testing in children
for conditions like HCM that are life-threatening and medically manageable without the
benefit of understanding the psychological consequences. The few studies that have been
conducted suggest that genetic testing in children may result in changes to family
relationships, parental emotional wellbeing, parenting behaviors, and child functioning in a
subset of children. One synthesis of these studies suggests that children as a group show
little evidence for maladjustment to risk information, but that parents are affected by the
carrier status of their children. The proposed study intends to further this body of
knowledge by exploring the impact of children s risk status on families with HCM. Health care
providers and researchers can inform their work with HCM families by better understanding the
potential impact of genetic risk as an important component of families adaptation to the
life-threatening information about their children. The families targeted for this exploratory
study will be purposively sampled from those that have been aware of the children s risk
status or not at-risk status for HCM for at least 3 months. The cross-sectional design is
composed of semi-structured interviews with a parent and, separately, with his/her 13 to 23
year-old child who is either a carrier for HCM, a non-carrier, or at 50% risk for being a
carrier. The interview will target issues related to the perceived impact of the child s risk
status on family functioning, parenting behaviors and relationships. Data from the
parent-child dyads will be analyzed for concordance/discordance along parallel themes. The
results of this study may facilitate the understanding of the perceived impact of learning
children s HCM risk status, which will inform both clinical care and future research.
Importantly, since predictive testing in children for adult-onset diseases is generally
discouraged, very little is actually known about its impact on families. Therefore, the study
of this unique subgroup of an HCM population that uses clinically indicated predictive
testing in childhood offers a preliminary opportunity to learn about predictive testing of
minors.
- INCLUSION CRITERIA:
For Parents:
A parent is eligible to participate in this study if he/she is:
- Biologically related to his/her 13 to 23 year-old child who meets eligibility
criteria,
- Self-identified as one of the primary care-takers,
- Aware of the HCM risk status of his/her child(ren) for at least 3 months.
- Cognitive, and
- English-speaking.
For Children:
A child is eligible to participate in this study if he/she is
- Biologically related to his/her eligible parent,
- Between ages 13-23 years old,
- Tested as a minor, and
- Aware of his/her HCM risk status or not at-risk status for at least 3 months,
- Cognitive, and
- English-speaking.
EXCLUSION CRITERIA:
Exclusion criteria: A parent is not eligible to participate in this study if he/she
- Is not biologically related to his/her 13 to 23 year-old child,
- Does not self-identify as one of the primary care-takers,
- Is not aware of the HCM risk status of his/her child(ren) for at least 3 months,
- Is cognitive impaired, or
- Does not speak English.
Exclusion criteria: A child is not eligible to participate I this study if he/she is
- Not biologically related to his/her eligible parent,
- Not between ages 13-to 23 years old,
- Not tested as a minor,
- Not aware of his/her HCM risk status or not at-risk status for at least 3 months,
- Is cognitive impaired, or
- Does not speak English. Note that children who have HCM will not be excluded from the
study.
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