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Experiential Accounts of the Challenges of Parents with Mental Retardation

Experiential Accounts of the Challenges of Parents with Mental Retardation. Alexis Palfreyman Rachel Weisenbach Hanover College . Our Interest. Definition of Mental Retardation (Sarason & Sarason, 2005). Individuals must meet the following three criteria: IQ of 70 or below

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Experiential Accounts of the Challenges of Parents with Mental Retardation

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  1. Experiential Accounts of the Challenges of Parents with Mental Retardation Alexis Palfreyman Rachel Weisenbach Hanover College

  2. Our Interest

  3. 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

  4. 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).

  5. 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 child’s physical and emotional health have become primary concerns (Tymchuk, 1992).

  6. 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).”

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

  8. 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

  9. 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

  10. 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?

  11. 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

  12. Participant A: Lisa

  13. Findings

  14. 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

  15. 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

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

  17. 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.

  18. 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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