Perspectives of Fathers whose Children have an

ASD

Team Members: Ana Kemple-Reeves, Jennifer Hutchinson, Alekhya Narravula, Connie Lillejord, Tyler

WhitneyFaculty Mentor: Barbara Fietchl

Project Background -Jennifer• Further exploration of last year’s URLEND Leadership

project.

• Paucity of research specifically on fathers.

• Their results suggested that fathers experience more psychological distress related to not being able to “fix” the problem.

• We wanted to measure the impact of children’s diagnosis of ASD on fathers’ psychological well-being and the parent-child relationship

Methodology- Ana• Fathers who participated in ABC’s of Autism Trainings

(Gina Cook’s Project) or Autism Listservs in UT, ID, WY, ND.

• Survey packets included:• Center for Epidemiological Studies of Depression Scale

(CES-D10),

• Burn’s Anxiety Inventory (BAI)

• Two father involvement measures.

• Packets were provided in English and in Spanish.

Methodology cont. - Connie• Surveys were anonymous

• Took approximately 15 minutes to complete

• Demographic Information Asked:• Parents’ age

• Parents’ education level

• Marital status

• State where they live

• More than one child with ASD

• Child’s age

• Number of months since ASD diagnosis

Survey Results - ConnieDemographics Results Mean

No. of Surveys 29 --

Fathers’ Age Range 26-60 y.o.

41

Mothers’ Age Range 28-54 y.o.

38

2 children with ASD in the family 12 --

1 child with ASD in the family 17 --

Males 79% --

Females 21% --

Survey Results cont.-AlekhyaDemographics Results

Married 97%

Never Married 3%

Divorced 0%

Average time since diagnosis

6 yrs.

Range of time since diagnosis

15 mos-13 yrs.

*Depression Results: 9 fathers reported needing to be screened for depression (score >10)

Child Age: Older child => less depression

Child’s Gender: Female child => more depression

Some possible interesting discoveries-Alekhya

• Fathers less likely to attend trainings/ be active on listservs

• Had a number of people visit survey page and leave without starting survey: possible that visitors were not fathers as first page of survey stated that survey is open ONLY to fathers.

• Is it because mothers are primary care providers to child?

• Do fathers cope by working more?

Future plans for project…-Ana• Present project on April 20th at Autism Conference in

Orem, UT.

• Leave listservs open for more data collection through the summer months.

• With more data we’d like to seek for publication to add to the literature.

• A larger and better study needs to be designed next year taking into account the challenges and limitations we faced in our project

Future Plans cont.-JenniferConduct a larger scale study using list serves

that extend nationally

Identify “incentives” for survey completion

Switch focus to identification of coping or support strategies that are working

Use this information to develop or establish support networks

Feedback on URLEND - AnaWhat I liked…

Clinic opportunities

Seminars

Team Collaboration

Suggested changes/additions to the program

Provide more information on clinic visits:

• A. Provide directions & information on what to expect (e.g. specific training, observation only, hands-on interaction?)

• B. Adequate information can help us decide which clinics will be unique and beneficial to us as trainees.

Feedback cont. - Alekhya• What I liked

o The organization of the syllabuso Opportunities like

interviewing a clinic manager taking part in a legislative activity working with and learning more about other

specialtieso I learned how to take initiative and be proactive.o Taught me better organizational skillso How to work effectively on a team project and bring

my strengths to the table• What I would change

o Organizing the PDC's better - knowing who is preparing for what ahead of time makes the session smoother

o Maybe having an online calender with open clinic spot days will help scheduling clinics easier.

Feedback on URLEND - Jennifer

“Teams make you better than you are, (group leadership project)

multiply your value, (parent directed consultations and clinic visits)

enable you to do what you do best, (didactic component)

allow you to help others do their best, (presenting ABCs)

give you more time, (???)

provide you with companionship, (Making Lifelong Connections)

help you fulfill the desires of your heart (ongoing education and research)

and compound your vision and effort.” (refined vision and perspective)

– John Maxwell

Feedback on URLEND-Connie

What I Liked: Clinic experiences in Utah, MN and Utah were great! 

Opportunity to look at best practices, network and gain a new awareness.

Appreciated the emphasis on cultural diversity and awareness (South Main and lectures).

Family –centered Care:  Lectures brought this more to the forefront for me.

Liked layout of the URLEND website – especially the pictures, syllabus and log.

What I would change: During the first two days of training – be cognizant of

use of acronyms.