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56 Cards in this Set
- Front
- Back
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Hakimian Article: Issues
Huntingtons Disease |
Huntington's Disease
Issue: does the duty of the physician to inform patients of their medical condition extend to non patient third parties? Issue: is the recipients right to privacy --> their right to not know |
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Hakimian Article: To tell
Huntingtons Disease |
1. responsibility to self, family, future children
2. should alter way of life 3. extremely unfortunate for proband (1st person of genetic study) but necessary 4. better to take precautions earlier 5. money, planning, insurance |
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Hakimian Article: Don't tell/family tells
Huntingtons Disease |
1. not irresponsible since genetic mutation, so not like HIV
2. unnecessary harm to tell because wont happen until adulthood 3. don’t want to live life knowing you will die like this 4. family is more comforting than doctor who is cold 5. control timing of telling 6. right to not know (personal right) |
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Huntingtons Disease: Legal perspective
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1. you can still choose to not know
2. risk not status 3. children, should you have them/test for them? 4. Social responsibility 5. future precautions and future planning 6. People should know their risks, so if they want to know, they can know |
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Huntingtons Disease: Family perspective
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1. comfort having from family members
2. timing 3. Psychological aspect, if someone doesn’t want to know, they have the right to not know. 4. Patient confidentiality rights 5. Bad precedent: breaking the patients rights 6. It should remain a family issue 7. People can get genetic testing whether they know they are at risk or not 8. No sure treatment |
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Huntingtons Disease: Family Dilemma
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1. We do not want to cause alliances, divisions among family members, or major conflicts. It can cause divisions among those who test positive and those who test negative.
2. Some may not want to have kids, and the spouse may not want to have the burden of taking care of someone for fifteen years because they are going to be very difficult to take care of. |
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Sobel Article: Systems Theory
Huntingtons Disease |
Links the interactions of the individual, the family, and the environment. (Change in one member effects change in other members which effects change in a system as a whole)
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Sobel Article: Family Ethical Dilemma
Huntingtons Disease |
1. A role change
2. caregiving issues 3. we don't want to cause alliances or divisions within family 4. telling people can cause ajor conflict |
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Sobel Article: 3 areas of family functioning most affected
Huntingtons Disease |
1. family membership
2. family communication patterns 3. family roles (change in response to care-taking) |
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Boss Article: "Ambiguous Loss"
Alzhiemer's Disease |
A kind of loss that dies closure in which the status of a loved one as "there" or "not there" remains indefinitely unclear
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Boss Article:
Alzheimer's Disease |
1. Physically present, psychologically absent
2. un-resolvable grief 3. greater ambiguity=harder to cope 4. Families tend to pick on (there or not there) |
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Boss Article: Greiving
Alzheimer's Disease |
-Grieving perpetually for long period of time with no concrete closure = uncertainty, disappointment & hope at the same time
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Boss Article: supporting someone with ambiguous loss
Alzheimer's Disease |
-In order to support one with ambiguous loss offer hope, optimism, emotional support
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Boss Article: Why ambiguous loss is difficult
Alzheimer's Disease |
-Families still have to interpret because it is much more difficult than a clean break from someone in their life
-They just need closure, they know they will experience a loss and are going through it but never complete it -Emotional roller-coaster that comes with this |
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Drentea Article: caretakers need support
Alzheimer's Disease |
-The only helpful support is perceived support (emotional)
-Most appreciated support: people who they love visiting them in their home with the alz. patient -Want company, NOT ADVICE |
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Drentea Article: Perceived/received support
Alzheimer's Disease |
Perceived: need to actually feel the benefits of the social support and that someone is meeting your needs
Received: someone is always there to help you NEED PERCEIVED! |
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Drentea Article: Counseling benefits
Alzheimer's Disease |
-Alleviates them and prevents them from burning out
-Improves their satisfaction which leads to better health outcome |
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Drentea Article: Key finding
Alzheimer's Disease |
The quality of social support depended on the number of people the caregiver felt close to and the amount of emotional support they received from those people determines the quality of perceived support.
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Galvin Article: 3 main fields
Genetic Risks |
1. prenatal and reconception
2. pediatric counseling 3. adult onset disorders |
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Genetic Risks speak
Clues in the family history |
1. How many people are affected by cancer in the family?
2. Are the cancers related types? 3. How old were people when they were diagnosed? 4. Has anyone had cancer more than once? 5. does anyone have an unusual type of cancer? |
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Genetic Risks speaker
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1. Talking about the history of cancer in a family, genetic testing, and high risk of cancer can all be very upsetting
2. Finding out about a patient’s past experiences might give you an idea of how they may be feeling in this new situation 3. Someone’s emotions can play a big role in the decisions they make, so it’s important to explore them |
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Genetic Risks speaker
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Family dynamics can affect testing strategy
(sporadic, hereditary, somewhere in between) |
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Galvin Article:
Genetic Risks |
a family’s ability to openly discuss a genetic disease may also determine how well members can
manage and treat the disease or even prevent transmission to future generations. |
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Galvin Article: genetic counseling
Genetic Risks |
308
Genetic counseling involves communicating the risk of genetic disease or disorders, the impact of the risk of the disease or disorder, and the treatment options available for the patient and his or her family members |
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Galvin Article: Weiner study
Genetic Risks |
85% do not discuss genetic testing with their families at all
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Galvin Article: family communication
Genetic Risks |
-What, when, how and whom to reveal possible genetic risk & discuss complex implications of a relatives test results
-Also childbearing issues |
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Galvin article: 3 themes
Genetic RIsks |
1. deliberation before communication
2. Communication strategies 3. outcomes of communication |
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Galvin Article: Proband
Genetic Risks |
-1st person to be diagnosed and they determine what info to disclose and how.
-They are still coping with emotional effects of learning their test results, hard for them to prepare for disclosure -When and how they disclose affect the entire family system -Don't share information equally to all relatives |
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Galvin Article: Factors that influence the enactment of such disclosure messages
Genetic Risks |
1. Relational Histories
2. Family Structure 3. Positions and Roles 4. Gender |
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Galvin Article: Women and family health communication
Genetic Risks |
-Women go beyond disclosure with close female relatives as a strategy to cope with their test results.
-They use family health communication for social support purposes |
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Copello Article: Take away point:
Alcoholism/Addiction |
Need family support for an alcoholic to recover
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Copello Article: Effects on children
Alcoholism/Addiction |
-Children experience negative childhoods, high levels of violence and inconsistency from one or both parents
-Children adopt responsible or parenting roles at an early age |
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Copello Article: Negative effects on children
Alcoholism/Addiction |
1. behavioral disturbance
2. Antisocial behavior 3. emotional difficulties 4. school problems 5. precocious maturity |
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Copello Article: 6 Themes affecting children
Alcoholism/Addiction |
1. Denial
2. Distortion & secrecy 3. attachment, separation and loss 4. family functioning, conflict and breakdown 5. violence, abuse and living in fear 6. role reversal, role confusion and child as carer |
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Copello Article: family members suffer
Alcoholism/Addiction |
-Family members suffer biopsychosocial stresses as a result of living in this environment, which may impact on physical and mental well-being and lead to the development of problems both for themselves and other family members
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Copello Article: family involvement
Alcoholism/Addiciton |
Evidence to support the view that family involvement can help engage the substance user in treatment. Family must approach patient to help them enter into treatment.
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Copello Article: 3 types of intervention
Alcoholism/Addiction |
1. AA: traditional 12 step approach
2. Johnson Institute Intervention: opposite of AA, CSOs (concerned significant other) take an active role in attempts to get the drinking into treatment 3. Unilateral Family Therapy: providing psychological treatment to CSOs can help facilitate non drinking behavior in identified patient (IP). Teach strategies to engage IP in treatment |
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Copello Article: Family therapy
Alcoholism/Addiction |
Aimed at adolescent substance misusers have been shown to lead to improved rates of school attendance and performance, improved family functioning, and reduced behavioral problems associated with the substance misuse
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Copello Article: CRAFT
Alcoholism/Addiction |
Aims to work with concerned significant others to reinforce non-substance-misusing behavior through a positive reinforcement process
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Copello Article: 3 types of intervention
Alcoholism/Addiction |
1. involving the family in engaging the substance misuser in treatment
2. focused on treating the misuser once they have developed problems 3. focused on affected family members in their own right |
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Eating Disorders: Anorexic (restricting)
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-Restrict what they eat to a point where they eat very little, if anything at al
-"High functioning" -Low conflict, high cohesion -Need to control, very organized and needs to get along with everyone in family to fit in |
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Eating Disorders: Anorexic (bulimic)
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-Alternate between periods of restricting and also times when they binge and purge
-Less high function families |
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Eating Disorders: Bulimic
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-"low functioning"
-high conflict, low cohesion |
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Fonseca Article: Boys risk factors
Eating Disorders |
1. high parental supervision/monitoring
2. sexual abuse history |
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Fonseca Article: Boys protective factor
Eating Disorders |
1. high perceived parental expectations
2. connectedness to friends and outside adults |
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Fonseca Article: Girl risk factors
Eating Disorders |
1. history of sexual abuse
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Fonseca Article: Girl protective factors
Eating Disorders |
1. Family connectedness
2. positive family communication 3. parental supervision/monitoring 4. maternal presence |
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Fonseca Article: Family factors studied (family functioning)
Eating Disorders |
1. Family communication
2. Supervision by parents 3. Family connectedness 4. Connection with friends and other adults |
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Fonseca Article: Take away point
Eating Disorders |
1. families have some control over weight control behavior, although not entirely
2. important to know family history when diagnosing/working with eating disoder patient |
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Fonseca Article: Sexual abuse
Eating Disorders |
-For Anorexia, the roots are to control their own body. With sexual abuse they feel like they have no control of there body, so this is a way to gain that back
-For children, they are aware of it, but the full weight of it hits around adolescence, they actually start to realize what has happened or what is happening. They feel ashamed and disgusted with themselves. They is a feeling of self-loathing which can lead to bingeing and purging. |
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Fonseca Article: family connectedness and communication
Eating Disorders |
-Family connectedness reduced extreme girls dieting
-Alternatively, connected to friends and other adults outside of their parents were reduced for boys dieting. Boys tended to have healthier behaviors if they were closer to others outside of their family. |
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Fonseca Article: immeshed realtionships
Eating Disorders |
Immeshed relationship, sometimes there are functional relationships of this type. Parent/child want to be part of each others lives at every waking moment. This is parent imposed because they don’t want to let go. To some it feels like there are being smothered rather than loved. Being over-loved, the child has no sense of control of their life which can lead to eating disorders.
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Eating Disoders
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-Bulimic families rate higher conflict than anorexic families
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Vidovic: Mother/daughter dyad
Eating Disorders |
1. Closest relationship for adolescent girls (usually) is mother
2. Daughters are more critical of their family dynamics than mothers |
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Vidovic: mother/daughter communication
Eating Disorders |
Mother-daughter communication was significantly better in patients with the restrictive form of anorexia nervosa compare to those suffering from the bulimic form of anorexia, and bulimia nervosa
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Vidovic: mothers
Eating Disorders |
Mothers tended to rate their families more favorably, may be due to their denial and conflict avoidance, but also to idealization and a narcissistic need of mothers to perceive their family positively
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