Appendix F: Caregiver Concept Elicitation Interview · Web viewThank you for participating in the research study. The purpose of the interview is to learn about the impact of ADD/ADHD

Date: __________ Participant Initials: _________ Participant ID: ________

Appendix F: Caregiver Concept Elicitation Interview Guide

ADHD Caregiver Interview

Thank you for participating in the research study. The purpose of the interview is to learn about the impact of ADD/ADHD on you and your child’s life including the available treatments. First, I will ask some background questions about you and your child, such as your child’s- age, and then I will ask you some questions about your experiences with ADD/ADHD and treatments. With your permission, I will record the interview. The recording will be used only for this research project. The information you provide will be kept confidential. The interview will last approximately an hour to an hour and a half.

[For UK Interviews in which a member of the study will be listening] Also, members of the study team or the study sponsor will be listening to the interview. Are you OK with members of the study team or sponsor listening to our interview?

Yes No (If NO, proceed with interview but do not allow observation)

I will begin the audiotape now. [Turn on recorder: This is study C3678, the ADHD interview study, today’s date is [date], and I am interviewing participant ID [ID number].

Just to confirm, do I have your permission to record our conversation? Yes No (If NO, end the call)

238133 (C3878) ADHD Interview Guide (Caregiver-UK) 16Apr12 Page 1


Consent: First, I will need to get your consent to participate in this study. You have been invited to participate in a one-on-one telephone interview because you have a child aged 6-17 with ADD/ADHD. Participation is voluntary, and you are free to choose whether or not you would like to participate. There are no known physical risks to participating in this study. There may be some unknown or rare and unforeseeable risks associated with this study; however, we are currently unaware of any. If you feel uncomfortable or have any questions during the interview, please feel free to ask me at any time. The information you provide will help us learn about children’s experience with ADD/ADHD. The eventual aim is to use the information learned to develop a report highlighting the burden of ADD/ADHD in Europe. There is no direct benefit to you. You will be compensated with a voucher in the amount of £60/€75/SEK650/NOK550 for your time. Participation is completely voluntary and you can stop at any time during this interview if you do not wish to proceed. I also have the contact information for the primary investigators and ethics review board who have reviewed and approved this study and can supply you with it at any time should you want to contact these individuals with comments or concerns. Also, please keep in mind that I am not a medical doctor so if you have any questions about your child’s ADHD you should ask your doctor.

Do you have any questions? Can you please tell me your understanding of the study? [Confirm understanding]. Can you please tell me what you would do if you decide you no longer want to participate? [Confirm understanding].

Do you give verbal consent to participate in this study? Yes No (If NO, end the call Record time: ____________)




Instructions for Interviewer

The focus of this interview is on identifying “unmet needs” of children with ADHD and their caregivers. In other words, are there “areas for improvement” with respect to treatment and medical care for the child. Throughout the interview, please listen for unmet needs (such as areas of difficulty even while on treatment or areas where parents, siblings, or friends accommodate for the child) and probe on these areas.

o Examples of unmet needs Child doing poorly in school even with medication

Child having behavior issues at school (e.g., being sent to the head teacher’s office) even with medication

Child having behaviour issues at home (e.g., difficulty having a family dinner) even with medication

Parent making accommodations for their child

Avoiding certain social activities or public places

Getting child extra help with schoolwork (e.g., hiring a tutor)

Giving medication at certain times to have peak effectiveness at key time points

Not giving medication on certain days

Reducing expectations or goals

Tolerating behaviors that are not acceptable in siblings

Changing work or daily habits to accommodate for the child

o Example probes to identify unmet needs: How does the medication help with this? Do you do anything else to help your child in this area?

How much effort do you/your child have to put into helping your child in this area? Is it a lot of work for you? Your child? Others?

Is your child reaching his/her full potential in this area? Is your child capable of doing better/achieving more? What is preventing your child from reaching his/her potential? What would help your child to reach his/her potential?

What other benefit do you think your child could get from the medication?

The approximate time you should spend on each section of the interview is provided next to the heading for each section.

Questions in red are key areas to be explored. Please pay particular attention to these questions and ask follow-up questions as needed to fully explore these areas.

Questions in boxes are probes that maybe be used to help elicit information on specific areas of impact and unmet need. If these topic areas are covered through the open-ended discussion, then these follow-up probes do not need to be asked. If these areas do not come up during the open-ended discussion, please probe on these areas.


Background (1 minute)First, I am going to ask you some background questions about you and your child.

1. What is your child’s first name?

2. What is your relationship to the child (e.g. mother, father)?

3. Is there another adult in the household who shares in the care of the child?

4. Are there any other children in the house?

5. How old is (name)?

6. What school year is (name) currently in? Has your child been held back in school? If yes, was this voluntary or required by the school?

7. Do you have ADD/ADHD? Does anyone else in your household besides (name) have ADHD? [Note to interviewer – if parent has ADHD, please ensure parent answers questions based on his/her child’s experience with ADHD and not his/her own experience.]

Barriers to diagnosis (5 minutes)

1. Who first noticed that (name) had symptoms of ADHD?

a. When was this (month/year)?

b. What symptoms did X notice first?

c. How long did it take you to realize that your child needed medical attention for this?

2. When (month/year) did you first seek medical attention for your child’s symptoms?

a. What made you decide to seek medical attention?

b. When (month/year) was (name) diagnosed with ADHD?

c. Do you believe your child has ADHD?



3. What was the process of getting diagnosed like?

a. Did you have any problems obtaining a diagnosis? If so, what types of problems did you have?

i. Difficulty in getting a referral?

ii. Difficulty in Dr willing to make the diagnosis?

iii. Misdiagnosed with something else before receiving ADHD diagnosis?

iv. Length of time to obtain diagnosis?

b. How many physicians/Drs did your child see before being diagnosed with ADHD?

4. How did you feel when you were told your child had ADHD?

a. What was your initial reaction? [Listen for shame/embarrassment; self-reflection or identification of caregiver or other family member having similar issues or possible ADHD diagnosis, difficulties or sense of additional time/extra attention/ needed to raise the child, anxiety on how to deal with ADHD child, guilt, parental sacrifices that needs to be made for the child (i.e, parents switching jobs often to meet the child’s needs, etc.)]

b. What were your expectations?

c. Did you have any initial concerns? What were they?

d. Did you share the diagnosis with others (family / friends/ school)? How did you feel about sharing the diagnosis with others?

Treatment (15mins)

Now, I’d like to talk about the types of treatments your child has received.

1. When your child was diagnosed what were your expectations about treatment (drug and non-drug)?

a. How did you think it would affect your child?b. How did you think it would affect you?c. Did the treatment meet your expectations? How so?d. Do you think (wish) treatment did more?



2. Did your child receive behavioural therapy after diagnosis before starting a medication? Does your child receive behavioural therapy now?

a. What did/do you think about it? What did/does your child think about it?i. Was/Is the behavioural therapy helpful? How so?

ii. Was it a requirement? Do you think this should be a requirement?iii. Do you think (wish) BT did more?

3. Did/do you receive any training or counseling? Was it helpful?

4. Does your child currently take any medication for ADHD?

If no:a. What were your reasons for taking your child off medication?

[Continue to questions below– ask about the child’s most recent medication]

If yes:a. Which medication(s)?b. How long has (name) been taking this?c. How often does your child take the medication? d. Are there days your child does not take medication? Is this intentional or

unintentional? For what reason? e. Does your child ever ask to not take the medication? For what reason?f. How much of the time does (name) take the medication as scheduled:: less than

or equal to 40% of the time, 41 – 80% of the time, greater than 80% of the time? g. What factors made you decide to treat (name’s) ADHD with this medication?h. Is this the first medication your child has ever taken for ADHD?

i. If no, how many medications has (name) tried in the past?For each medication mentioned:

1. When did (name) take this and for how long?2. Did the medication help your child? 3. Why did (name) stop taking the medication?

i. For (name’s) current medication, has the dose changed since he/she first started taking it?

i. How long did it take to arrive at (name’s) current dose?ii. How many times did (name) change doses?

iii. What made you decide the current dose was sufficient?j. How well does this medication work? How can you tell?k. Does your child take/has your child taken more than one medication for ADHD?

1. For what reason is/was your child on more than one medication?



2. How did adding the other medication affect your child?a. Did it work better? How so?

Burden of illness (15mins)

Now let’s talk a bit about how you and your child are doing with respect to his/her ADD/ADHD.

1. What is it like to have a child with ADHD?a. What symptoms / impairments / dysfunction does your child experience? What is

the impact on your child?b. What is it like for you?c. What are your 3 biggest issues? d. What ADHD-related symptoms or behaviours bother you most?e. What ADHD-related symptoms or behaviours bother your child most?f.

2. How is your child doing now? a. Tell me about a typical school day with your child while on medication (if

currently on medication)?b. Tell me about a typical weekend day with your child while on medication (if

currently on medication?)

3. Does your child have good days and bad days on medication?a. What is a bad day like on medication? How often does he/she have bad days?

4. What is the most difficult or challenging part about having a child with ADHD?a. What is the most challenging part for your child?b. What is the most challenging part for your partner?c. What is the most challenging part for your other children?

5. What is your biggest fear related to your child’s ADHD?a. Biggest fear for yourself?b. Biggest fear for your child?c. Biggest fear for the sibling (if applicable)?

6. In thinking about your child’s ADHD, are there areas where you wish your child was doing better? What areas?



7. Is ADHD holding your child back in any way? How so?

8. How are you doing with respect to your child’s ADHD?a. How do you feel? [Listen for feelings of “helplessness” and probe on this

concept]b. How are you handling everyday life?c. How much effort does it take to deal with your child’s ADHD? If a lot, in what

way? What could help reduce the effort you have to spend dealing with your child’s ADHD?

i. How are you coping?ii. What level of control do you feel over your child’s ADHD?

9. How is your partner doing with respect to your child’s ADHD?a. How much effort does it take your partner to deal with your child’s ADHD? If a

lot, in what way? What could help reduce the effort he/she has to spend dealing with your child’s ADHD?

10. How are his/her siblings doing with respect to your child’s ADHD (if applicable)?a. How much effort does it take your other children to deal with your child’s

ADHD? If a lot, in what way? What could help reduce the effort they have to spend dealing with your child’s ADHD?

[Interviewer note: now ask PROBES ON SCHOOL, ACTIVITIES OUTSIDE OF SCHOOL, SOCIAL LIFE-FRIENDS, FAMILY, OUTINGS, SOCIAL LIFE OF PARENT if these issues have not already been thoroughly addressed. Be sure to ask the “unmet need” probes as needed]

Treatment satisfaction (10mins)

Now I’d like to talk to you a bit more about your child’s current medication (or last medication for those not currently on medication).

1. How satisfied or dissatisfied are you with your child’s current medication? What makes you satisfied/dissatisfied?

a. What do you like about (name’s) medication?b. What do you dislike about it?

2. Do you hope/ wish the medications could work better? How so?a. If you had your wishes what would a better medication do?



3. Can you describe what an ideal treatment would be like for your child ? a. How is this different from your child’s current medication? b. What would it do that current drugs are not doing?

4. Do you feel that you have enough treatment options?

5. Do you have any concerns about the medication?a. What is your biggest concern about starting a medication?

6. Does (name) still have symptoms/impairments even when he/she takes the medication?

7. How does your child feel about taking the medication? a. What does your child like about being on the medication?b. What does your child dislike about being on the medication?c. What does your child expect from a medication?

8. If there was one thing you could change about your child’s medication, what would it be?

Management (5mins)

1. How does your child’s doctor see ADHD as a disease condition? a. A chronic condition?b. Requiring long-term care?c. Very debilitating?

2. How helpful were family physicians/GPs in terms of managing your child’s ADHD and referring you to specialists and other resources?

3. Who does your GP think should be responsible for treating your child’s ADHD? (GP or Specialist?)

4. What is your relationship like with your child’s doctor who treats his/her ADHD?a. How much do you participate in treatment decision-making for your child?b. Do you see yourself as a partner in the care of your child with your child’s

doctor?

Support and Quality of Care (5 mins)



1. Are you aware of any resources (such as support groups or organizations) available to help you with your child’s ADHD? What resources?

a. Who referred you to these resources?b. Are you involved in teams with teachers, other parents, and/or other care

providers designed to help your child at school and home?c. Are there areas where you could use more support?d.

2. Does your community/the public understand ADHD?a. Does your community/the public understand you and your child’s needs related to

ADHD?

2. Overall, how satisfied or dissatisfied are you with the quality and adequacy of the medical care your child receives for his/her ADHD?

a. What makes you satisfied?b. What makes you dissatisfied?

3. Do health care professionals understand your needs with respect to your child’s ADHD?

4. Do you receive adequate support from health care professionals?a. What types of support have you received (provide examples)?b. Are there areas where you would like more support?

Other (1 min)

1. Does your child get into any other sort of trouble related to his/her ADHD?a. What are other things you have to put up with because of your child’s ADHD?

i. Such as run ins with the legal system, frequency of traffic accidents, getting involved in fights, running up traffic violations bill, accumulation of library late charges, other healthcare resources consumed, etc.?

2. Are there any other problems you or your child are having in other areas of life that we haven’t talked about?

3. Is there anything else you would like to add to help us better understand the impact of ADHD or its treatment on the lives of patients and families?

(Administer Sociodemographic/Clinical Questionnaire)

That completes the interview. Thank you for your participation!




PROBES ON SCHOOL 1. How does ADHD affect (name’s) performance at school?

i. How is s/he doing in school now? ii. What are his/her grades like? Do you think his/her grades could be

better? What is preventing (name) form getting better grades?iii. Do you think (name) is reaching his/her full potential at school?iv. Have your expectations for your child’s performance in school or what

you believe he/she can achieve changed since he/she was diagnosed with ADHD?

1. If not, how about after treated?2. [If relevant] Are your expectations for your other children the

same or different than your expectations for (name) in terms of school performance?

v. Compared to other children your child’s age, how do you think your child is doing in school?

vi. If there is a negative (or positive) answer to the above, ask if it is relative to the ADHD or some other factor

vii. Does having ADHD affect (name’s) relationships or interactions with teachers or classmates? How so?

viii. Is your child ever excluded from school activities because of having ADHD? What types of activities?

ix. Does your child need extra help at school? What type of help?1. Does your child receive the help that he/she needs at school?2. Do you think the school understands your and your child’s

needs?3. Is your child’s school able/willing to administer your child’s

medication?4. Are there ways that the school could help more? How so?

x. How does your child do with homework? 1. What is homework time like?2. Does your child need extra help with homework?

a. How do you feel about providing extra homework help?b. How does your child feel about it?

3. [If relevant] How is this different from homework time for your other children?

a. [If relevant] How do your other children feel about (name) receiving extra help?

xi. Does your child ever have disciplinary problems at school? For example, not listening, not paying attention, getting into fights, being given detention or being sent to the head teacher’s/ Principal’s office?

xii. Does (name’s) school performance affect the family? How so?



PROBES ON ACTIVITIES OUTSIDE OF SCHOOL

1. Is s/he involved in activities outside of school (sports, music, clubs, etc)? How does his/her ADHD affect those activities?

a. Does he/she need extra help or support during these activities? If so, does he/she get the support he/she needs?

b. Do you think (name) is reaching his/her full potential at these activities?c. Are there other activities your child would like to do but can’t because of

ADHD?

PROBES ON SOCIAL LIFE - FRIENDS

1. How does having ADHD affect his/her social life or friendships?a. Does having ADHD affect your child’s friendships? The key here is that

ADHD children think that they are normal. We need to ask the question do they perceive making friends to be a problem?

i. Does it affect his/her ability to make and/or keep friends?ii. Does it affect his/her options for friends?

1. Does it affect the types of friends he/she has?b. Have your expectations for your child with respect to friendships changed since

he/she was diagnosed with ADHD?c. Compared to other children your child’s age, how do you think your child is

doing with respect to making and keeping friends?i. Does your child get invited to play with friends / go out with friends?

Parties?d. [For younger children]How does your child do during playtime/outings with

friends?i. Does your child need extra support or supervision during

playtime/outings?1. How do you feel about this?2. How does your child feel about it?


PROBES ON UNMET NEEDS


PROBES ON FAMILY

1. Does (name’s) ADHD affect your family life? How so? [Listen for stress, impact on other children, etc.]

a. Does (name’s) ADHD affect your relationship with him/her? How so?i. What is your relationship like with (name)?

ii. Do you feel close to (name)?iii. [if relevant] Is your relationship with (name) different from your

relationships with your other children?iv. Are there ways you wish your relationship was different? How so?

b. Does (name’s) ADHD affect your relationships with your other children? How so?

c. Does (name’s) ADHD affect your partner’s relationship with him/her? How so?i. How is your partner’s relationship with (name)?

ii. [if relevant] Is your partner’s relationship with (name) different from his/her relationships with your other children?

d. Does (name’s) ADHD affect his/her relationships with siblings? How so?i. How does (name) get along with his/her siblings?

ii. How does (name’s) ADHD affect his/her siblings? Does it affect their achievements?

e. Does (name’s) ADHD affect your relationship with your partner? How so?i. Do you have disagreements related to your child’s ADHD? What

about?f. How is the overall closeness of the family?

i. Are there ways you wish the family dynamics were different? How so?g. Does (name’s) ADHD affect the daily routine of the family? How so?

i. What are mornings like for your family?ii. What is dinnertime like for your family?

iii. What are weekends like for your family?h. Have your expectations for your child’s behaviour at home changed since

having been diagnosed with ADHD? How so?i. What accommodations have you made at home due to your child’s ADHD?

Have you given up things? Changed the way you do things? Tolerate certain things (behaviors) you normally would not?


For any symptom or impact mentioned during this section, ask the following probes to determine if there is unmed need even with medication:

How does the medication help with this? Do you do anything else to help your child in this area?

How much effort do you/your child have to put into helping your child in this area? Is it a lot of work for you? Your child? Others?

Is your child reaching his/her full potential in this area? Is your child capable of doing better/achieving more? What is preventing your child from reaching his/her potential? What would help your child to reach his/her potential?

What other benefit do you think your child could get from the medication?




PROBES ON OUTINGS (e.g., shopping trips, going to social events, holidays, etc.)

1. Does (name’s) ADHD affect outings away from home? How so?a. Do you bring (name) with you on shopping trips (this is time dependent- should

somehow quantify between short (<30 mins) and long (>30mins)? i. If yes, what are shopping trips like with (name)?

ii. If no, what is the reason?b. Do you bring (name) to social events, like parties or going out to dinner?

i. If yes, what are these like with (name?)ii. If no, what is the reason?

c. Do you go on family holidays? i. If yes, what are family holidays like with (name)?

ii. If no, what is the reason?d. Any other accommodations made?

PROBES ON SOCIAL LIFE - CAREGIVER

1. Does (name’s) ADHD affect your social life? How so? As before should ask about their work impacts of child’s ADHD if any.

a. Does your child’s ADHD affect your friendships?i. Do your peers understand the issues you face related to your child’s

ADHD? 1. Do you receive support from your peers?

ii. Do you ever feel excluded from social activities because of your child’s ADHD?

Documents

Appendix F: Caregiver Concept Elicitation Interview · Web viewThank you for participating in the research study. The purpose of the interview is to learn about the impact of ADD/ADHD