Table 3. Teen Strategy Ratings of Somewhat or Very Helpful by Gender.
Male (n=14) Female (n=30) p (chi square)
I talk to others in similar situation 1/14 12/30 .003
I talk to counselor or therapist 0/14 8/30 .038
I gather information about my concerns about my family member with HD from doing reports or research 5/14 17/30 .042
I gather information about my concerns about my family member with HD from the HD Center staff 0/14 13/30 .001
I gather information about my concerns about my family member with HD from conferences 2/14 7/30 .007
I enjoy my relationship with him/her 7/14 22/30 .043
Table 4. Teen Strategy Ratings of Somewhat or Very Helpful by Age Group Providing Response.
14–17 (n=23) 18–29 (n=21) p (chi sq)
I help him/her getting dressed/undressed 8/23 16/21 .048
I protect him/her from being injured 7/23 21/21 .010
I use humor to cope 7/23 19/21 .018
I frequently clean our house 6/23 19/21 .035
I spend time with friends 0/23 17/21 .015
The scatterplot (Figure 1) suggested two sub-groups of response items: (1) those with a strong positive correlation (r=+0.84) between use and perceived helpfulness, and (2) those with a negative or inverse relationship between use and perceived helpfulness. The cutoffs for the low and high quartiles on the use variable were 0.290 and 0.645 respectively and the cutoffs for the low and high quartiles on the helpfulness variable were 2 .00 and 2.33 respectively.
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Figure 1
Teen use strategy by perceived helpfulness.
Positively Correlated Sub-Group
The positively correlated group of strategies (n=69) demonstrated a strong correlation (r=0 .84) between amount of use and perceived helpfulness. Because of the large numbers of strategies in this group, the strategies were further sub-divided into two categories and analyzed using conventional content analysis (Hsieh & Shannon, 2005). The first sub-division was the “low use/low helpfulness” category (17 items), which included the use of medication, alcohol/tobacco/drugs, and a counselor. The second sub-division was the “high use/high helpfulness” (52 items), which included obtaining information about HD, actions on behalf of the parent with HD, and thinking about or doing something else (one form of coping by using distraction).
Negatively or Inversely Correlated Sub-Group
This group of strategies (n=6) demonstrated negative or inverse relationships between amount of use and perceived helpfulness. The group was further sub-divided into two categories: (1) low use, High helpfulness (five items), and (2) higher use, low helpfulness (one item). The “low use, high helpfulness” strategies were for obtaining information and actions on behalf of the family member with HD. The single strategy with higher use, but low helpfulness was, “I hold my emotions in”.
Twenty-eight (64%) of the participants answered the open-ended item at the end of the survey, “Please indicate what else do you need to manage your concerns about the person with HD and yourself”. The most common responses were (1) a desire for more information about HD, and (2) a desire for the support of others who would understand. For example, one participant shared, “I needed somebody who understood HD and who understood me….I needed a chance and a choice to be only me… I still need that.”
Table 3. Teen Strategy Ratings of Somewhat or Very Helpful by Gender.
Male (n=14) Female (n=30) p (chi square)
I talk to others in similar situation 1/14 12/30 .003
I talk to counselor or therapist 0/14 8/30 .038
I gather information about my concerns about my family member with HD from doing reports or research 5/14 17/30 .042
I gather information about my concerns about my family member with HD from the HD Center staff 0/14 13/30 .001
I gather information about my concerns about my family member with HD from conferences 2/14 7/30 .007
I enjoy my relationship with him/her 7/14 22/30 .043
Table 4. Teen Strategy Ratings of Somewhat or Very Helpful by Age Group Providing Response.
14–17 (n=23) 18–29 (n=21) p (chi sq)
I help him/her getting dressed/undressed 8/23 16/21 .048
I protect him/her from being injured 7/23 21/21 .010
I use humor to cope 7/23 19/21 .018
I frequently clean our house 6/23 19/21 .035
I spend time with friends 0/23 17/21 .015
The scatterplot (Figure 1) suggested two sub-groups of response items: (1) those with a strong positive correlation (r=+0.84) between use and perceived helpfulness, and (2) those with a negative or inverse relationship between use and perceived helpfulness. The cutoffs for the low and high quartiles on the use variable were 0.290 and 0.645 respectively and the cutoffs for the low and high quartiles on the helpfulness variable were 2 .00 and 2.33 respectively.
View full-size image.
View Large Image Download to PowerPoint
Figure 1
Teen use strategy by perceived helpfulness.
Positively Correlated Sub-Group
The positively correlated group of strategies (n=69) demonstrated a strong correlation (r=0 .84) between amount of use and perceived helpfulness. Because of the large numbers of strategies in this group, the strategies were further sub-divided into two categories and analyzed using conventional content analysis (Hsieh & Shannon, 2005). The first sub-division was the “low use/low helpfulness” category (17 items), which included the use of medication, alcohol/tobacco/drugs, and a counselor. The second sub-division was the “high use/high helpfulness” (52 items), which included obtaining information about HD, actions on behalf of the parent with HD, and thinking about or doing something else (one form of coping by using distraction).
Negatively or Inversely Correlated Sub-Group
This group of strategies (n=6) demonstrated negative or inverse relationships between amount of use and perceived helpfulness. The group was further sub-divided into two categories: (1) low use, High helpfulness (five items), and (2) higher use, low helpfulness (one item). The “low use, high helpfulness” strategies were for obtaining information and actions on behalf of the family member with HD. The single strategy with higher use, but low helpfulness was, “I hold my emotions in”.
Twenty-eight (64%) of the participants answered the open-ended item at the end of the survey, “Please indicate what else do you need to manage your concerns about the person with HD and yourself”. The most common responses were (1) a desire for more information about HD, and (2) a desire for the support of others who would understand. For example, one participant shared, “I needed somebody who understood HD and who understood me….I needed a chance and a choice to be only me… I still need that.”
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