Families & caretakers of the disabled Alanna Morgan Professor Marty Laubach Senior Capstone 2017

introduction Focus: Families & caretakers of the disabled in the Appalachian area (Mostly Saint Albans & Huntington) Stress Depression Burden Other Mental Health Impacts Amount of Resources

Key terms Disability Able-Bodied Ableism

Theory Eitzen: Background on disability and ableism in the US Day & Alston: Found that caring for adults is more stressful Elliott: Found that family is now becoming the primary caregiver Feigin: Found that the perceptions of women as better caregivers is wrong, though there is not consistent evidence- this goes against my theory My Theory: Families in this region are more often the caretakers, women are more likely to be caretakers, and that stress, depression and other mental illnesses are common

methods Senior Capstone Survey (Approx. 350) Observations (Ethnographic Field Research- one family for several months) Interviews: In-Person (10) Online via Qualtrics (3)

Senior capstone survey Conducted in Spring of 2017 Intro Sociology and Anthropology classes at Marshall University There were approximately 350 surveys sent out Included questions for all capstone projects Basic demographics: 38.8% were male 57.5% were female 73.8% were West Virginia residents

Survey data Pertaining to all questions: race and gender did not make a difference. Being a caregiver of the disabled is stressful: younger individuals & individuals with higher GPAs were more likely to agree Lower social class = more likely to be a caregiver or knew someone in their family who was a caregiver If mother’s education was higher they were more likely to give care If father’s education was higher they were more likely to say they had family friends that gave care 80% Agree that caregiving is stressful & 16% feel that there are enough resources The older the respondent was the more likely they were to identify as a caregiver

Data continued Being a caregiver for the disabled is stressful Agree 80% Disagree 20% There are enough resources for caregivers/families of the disabled Agree 16% Disagree 84%

Interviews 10 in-person and 3 via Qualtrics Conducted in Fall and Spring 2017 Patterns: most interviewees were women (9/13), many felt stress and depression, that there were not enough resources, and many wish they could do more

observations One family in Saint Albans, WV for several months- serves as a case study Husband taking care of wife He had to take care of everything: from bills to shopping to daily care of his wife. For example, he had to give her IV meds and help her take all of her other medicine at the proper times He enjoyed the work and was glad to help “Most stress comes from working and making sure they have what they need while I’m at work.”

conclusions My theory was partially right: most caretakers were women (both the interviews and the survey showed that), stress and depression were common, however most of the caretakers were not family members, rather they had professional healthcare take care of their family members. I would like to continue research into this topic and possibly create something that can provide more help to caregivers Disabilities and caregiving comes with certain stigmas as well as many mental health impacts. There is a lack of resources available to help those in need and those that do exist are bogged down by those that do no really need them.

references Day, A.M., & Alston, P.P. (1988). Stress in Primary Caretakers of Chronic Physically Disabled Children and Adults. Rehabilitation Psychology, 33(2), 113-119. Retrieved from http://muezproxy.marshall.edu:2135/docview/614361699?accountid=12281. Eitzen, S.D., Zinn, M.B. & Smith, K.E. (2014). Disability and Ableism. Social Problems (264- 284). Upper Saddle River, NJ: Pearson. Elliott, T.R, Shewchuk, R.M., & Richards, J.S. (2001). Family Caregiver Social Problem- Solving Abilities and Adjustment during the Initial Year of the Caregiving Role. Journal of Counseling Psychology, 48(2), 223-232. Retrieved from http://muezproxy.marshall.edu:2135/docview/61434533?accountid=12281. Feigin, R. (1994). Spousal Adjustment to a Post Martial Disability in One Partner. Family Systems Medicine, 12(3), 235-247. Retrieved from http://muezproxy.marshall.edu:2135/docview/614349425?accountid=12281