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 IQ of 70 or below Deficits in functioning (e.g. self-care and social skills) Deficits in functioning (e.g. self-care and social skills) Diagnosed before the age of 18 years Diagnosed before the age of 18 years

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).

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).

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).”

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

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 Age range was 26 to 59 years Seven African Americans, Two Caucasians Seven African Americans, Two Caucasians Range of marital status, custody, living situations Range of marital status, custody, living situations

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

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? Did you take part in any parenting programs? What help did your doctor give you? What help did your doctor give you?  Who helps you now with your child?  When your first born arrived, what was the hardest thing?

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

Cluster:Theme:Quote:Page/LineParticipant File Difficulties Transitionsn/a Transportationn/a Finances“…I don’t have the um, I don’t mean I don’t have the ability, but of the money to take care of her right now.” p.5/ Healthn/aSeizure disorder; Tourettes; depression Custodyn/a Interactions“To pick her up…I was nervous…Because I didn’t know if I was going to drop her…I didn’t know how to, um, to hold her…anything. I didn’t know how to do any of that stuff.” p.3/108, Participant A: Lisa

Findings ClusterTheme Number of Participants Difficulties Transitions 2 Transportation 1 Finances 4 Health 6 Custody 5 Interactions 4 ClusterTheme Number of Participants Sources of Help Family 9 Friends 2 Health care team 5 Staff/supported living 9 Parenting programs 5

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 5 participants took parenting classes Reasons for taking a parenting class Reasons for taking a parenting class Reactions to classes Reactions to classes

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. Four participants felt they had difficulties in this area. Linked with Communication Linked with Communication Types of interaction difficulties Types of interaction difficulties

Discussion  Clusters and themes appear across participants Sources of Help Sources of Help Parenting ProgramsParenting Programs Difficulties Difficulties Parent-Child InteractionsParent-Child Interactions

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). 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. Not all participants struggled with tasks that previous research has consistently addressed.

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.