Experiential Accounts of the Challenges of Parents with Mental Retardation

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Experiential Accounts of the Challenges of
Parents with Mental Retardation

• Alexis Palfreyman
• Rachel Weisenbach
• Hanover College

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Our Interest
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Definition of Mental Retardation (Sarason
Sarason, 2005)

• Individuals must meet the following three
  criteria
• IQ of 70 or below
• Deficits in functioning (e.g. self-care and
  social skills)
• Diagnosed before the age of 18 years

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Statistics

• Approximately 15 of American parents have some
  type of disability (Parents with disabilities,
  1998).
• The prevalence rate of mental retardation is
  about 1. (Carson-Dewitt, R. Ford-Martin, P.A.,
  2005).

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Social Beliefs and Concerns

• Sterilization was the norm through the 1970s for
  persons with MR (Aunos, M. Feldman, M.A.,
  2002).
• Approximately 75 of parents were against their
  children marrying and raising children (Aunos, M.
  Feldman, M.A., 2002).
• Parents with MR have most commonly been described
  as abusive and neglectful, therefore the childs
  physical and emotional health have become primary
  concerns (Tymchuk, 1992).

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Parenting Programs

• it is generally agreed that many of these
  parents could function competently with training
  and support (Tymchuk, A.J. Feldman, M.A.,
  1991).

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Research Questions

• What challenges of parents with mental
  retardation can be identified?
• What are some commonalities among this
  population?
• What are some differences?

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Participants

• Nine participants were recruited through Noble of
  Indiana
• Participants were all diagnosed with mental
  retardation before the age of 18 years
• All participants were their own legal guardians
• Seven mothers, two fathers
• Age range was 26 to 59 years
• Seven African Americans, Two Caucasians
• Range of marital status, custody, living
  situations

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Procedure

• Interviews were conducted at Noble of Indiana
• Informed consents
• Semi-structured interviews based on questionnaire
  
• Interviews recorded
• Debriefing
• Interviews transcribed
• Client records obtained and reviewed

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Sample Questions from Questionnaire

• General demographics
• How did you feel when you found out you were
  becoming a parent?
• Who helped you during the pregnancy/when you were
  getting ready for the child?
• Did you take part in any parenting programs?
• What help did your doctor give you?
• Who helps you now with your child?
• When your first born arrived, what was the
  hardest thing?

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Mode of Analysis

• Based on Interpretative Phenomenological Approach
  (Willig, C., 2001)
• Initial encounter
• Identification of themes
• Clustering of themes
• Production of summary table
• Integrating cases

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Participant A Lisa
Cluster Theme Quote Page/Line Participant File
Difficulties
Transitions n/a
Transportation n/a
Finances I dont have the um, I dont mean I dont have the ability, but of the money to take care of her right now. p.5/204-205
Health n/a Seizure disorder Tourettes depression
Custody n/a
Interactions To pick her upI was nervousBecause I didnt know if I was going to drop herI didnt know how to, um, to hold heranything. I didnt know how to do any of that stuff. p.3/108,110-111
Interactions p.3/108,110-111
Interactions p.3/108,110-111
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Findings
Cluster Theme Number of Participants
Difficulties    
  Transitions 2
  Transportation 1
  Finances 4
  Health 6
  Custody 5
  Interactions 4
Cluster Theme Number of Participants
Sources of Help    
  Family 9
  Friends 2
  Health care team 5
  Staff/supported living 9
  Parenting programs 5
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Sources of Help

• All participants discussed using a combination of
  sources to assist them.
• All participants mentioned family and staff, and
  some participants mentioned friends, health care
  team, and parenting programs.
• Parenting Programs
• 5 participants took parenting classes
• Reasons for taking a parenting class
• Reactions to classes

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Difficulties

• Participants struggled with a range of issues and
  there was not one dominant difficulty for all
  participants.
• Parent-Child Interactions
• Four participants felt they had difficulties in
  this area.
• Linked with Communication
• Types of interaction difficulties

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Discussion

• Clusters and themes appear across participants
• Sources of Help
• Parenting Programs
• Difficulties
• Parent-Child Interactions

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Discussion

• Integration of our subjective data with previous
  research is contributing to a more holistic
  understanding of these individuals experiences.
• Parents discussed Difficulties that previous
  research did not mention (e.g. transitions,
  transportation).
• Not all participants struggled with tasks that
  previous research has consistently addressed.

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Implications and Applications

• Information gained from our study may be useful
  in designing programs that address a wider range
  of parenting issues.
• Parents with MR cannot utilize the same resources
  as other parents.
• Our awareness of their needs will help us create
  and provide access to the best resources.

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