Matching Items (5)

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What Happens When They Become Disabled: An Examination of Adolescent Development While Living With Muscular Dystrophy

Description

Using interpretative phenomenological analysis (IPA), a qualitative research method, combined with quantitative data, this study was designed to examine what it means to be an adolescent living with muscular dystrophy,

Using interpretative phenomenological analysis (IPA), a qualitative research method, combined with quantitative data, this study was designed to examine what it means to be an adolescent living with muscular dystrophy, a life-limiting disease. A sample of twelve adolescents with Duchenne (eight), limb-girdle (two), and friedreich's ataxia (two) as subsets of muscular dystrophy were interviewed one-on-one, as were their parent or adult guardian. Interviews consisted of 16 opened-ended questions for adolescents, and 17 open-ended questions for parents or guardians. Participants also completed a pre-interview online survey consisting of 38 closed-ended questions using a Likert-type scale to gather demographic and treatment information. The focus of these interviews included peer relationships, self-concepts, and family dynamics in the lives of adolescents with muscular dystrophy. Each of these categories was examined in relation to participants' processes of making meaning of their experiences. It was discovered that parent and child attitudes towards disability run parallel, whether that be positive, negative, or neutral in regards to quality of life with a disability. It was also determined that at least one parent must be a stay-at-home job or be able to work from home in order to be the caliber of caregiver required for their child. Adolescents in this study all had a strong support system in place, with the predominant support system being their family. Self-reports on whether or not adolescents worried about how their muscular dystrophy affected their families were split. Families planned activities within their family unit by utilizing a complete activity inclusion approach, separate opportunities for siblings approach, or activity elimination approach. Regardless of level of family support, it was found that the majority of adolescents in this sample try not to think about muscular dystrophy, or have neutral feelings towards these thoughts. They also thought that people who do not have muscular dystrophy do not know what it is like to live with this disease, and felt neutrally towards the way that they look. Medically speaking, the majority of adolescents reported feeling neutral towards the support that they receive from their medical providers, and that their providers do not talk directly to them but rather to the rest of their family or caregiver instead. These adolescents could not manage their own medical needs and their medical appointments were made by a parent or other type of caregiver. A strong misperception that a physical disability also signals the presence of an intellectual disability when at school was evident. Adolescents were also quick to point out the social stigma that comes with having the assistance of an aid at school with able-bodied peers. However, a small few, particularly those younger in age, reported a lack of peer stigma, and even the social benefit of having an adult friend at school. While the Muscular Dystrophy Association is trusted in coordinating patient care, their treatment advisements are perceived to be outdated, and Goodwill Ambassador program considered manipulative by patients. Application to the Muscular Dystrophy Association (MDA) Transitions Program are named so that the organization formerly relied upon most to serve these families and who has a program designed to serve this exact population can benefit from them. With zero families interviewed having heard of or utilized this program, a clear change in their programs and practices need to take place. The information gathered from this study provides insight for developing and to guide new programs to assist this population in making the difference the MDA Transitions Program aims to do.

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Created

Date Created
  • 2016-12

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Connecting to the Community: A Needs Assessment of Families and Early Childhood Professionals

Description

The Paradise Valley Family Resource Center (PVFRC) is a not for profit, community based organization funded by First Things First and a part of the Paradise Valley Unified School District

The Paradise Valley Family Resource Center (PVFRC) is a not for profit, community based organization funded by First Things First and a part of the Paradise Valley Unified School District (PVUSD) in Phoenix, Arizona. The mission of this organization is to connect and strengthen families with children from birth to five years old in the Phoenix valley. The PVFRC longed to be more cognizant of what the needs of the community they serve are, and how they, as an organization, can administer programs of value to the community. Hence, the PVFRC entered a partnership with the Community Action Research Experiences (CARE) program at Arizona State University to develop a research proposal to improve their effectiveness and efficiency at achieving their mission. The purpose of this research project was to identify and evaluate the needs of the families with children ages birth to five within the community, to improve upon existing programs and services or to implement new programs, and to discover more effective modes of awareness and advertisement to the community about the programs and services the PVFRC provides. The main research questions of the experiment included asking participants about what programs and services they need, wish, or want to exist at the PVFRC, what barriers or gaps they see or experience regarding attending the PVFRC, how did participants learn about the PVFRC, and what are the best ways to contact families in their community. The methods of the research included conducting focus group interviews with families who utilize the programs and services at the PVFRC and with early childhood professionals in the Paradise Valley Unified School District (PVUSD), which included social workers and preschool teachers. A total of 25 participants were interviewed (10 families, 6 social workers, and 9 preschool teachers) and responses from the interviews were coded by the researcher. The results of the research was that the PVFRC is meeting many needs and current families are satisfied, participants desire some changes to current programs and services, and the best modes of advertisement and awareness were "word of mouth" and the internet. It was recommended that in order to better achieve their mission, it is advised that the PVFRC make appropriate changes to programs and services as suggested by the participants, connect with mom's or parents groups in the community, collaborate with preschool teachers on the front line, and increase their online presence through the use of social media and their website.

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Created

Date Created
  • 2016-05

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EVALUATION OF CASE MANAGEMENT PROGRAM REFERRALS: A COLLABORATION BETWEEN THE TEMPE YOUTH RESOURCE CENTER AND COMMUNITY ACTION RESEARCH EXPERIENCES

Description

Community Action Research Experiences (CARE) collaborated with the Tempe Youth Resource Center (TYRC) to evaluate the quality of the center's case management referrals, the rate of follow-up done on those

Community Action Research Experiences (CARE) collaborated with the Tempe Youth Resource Center (TYRC) to evaluate the quality of the center's case management referrals, the rate of follow-up done on those referrals, and to assess whether supports were needed to assist their clients in the follow-up process. Data were collected over a two month period from records of weekly referrals as well as in face-to-face interviews. Over the two month period, data was collected on a total of 41 potential participants and 128 referrals. Eighteen clients participated in an interview and reported on 47 referrals. The results indicated that the overall quality of the referrals was good as well as the follow-up rate. The results also indicated that the follow-up rate could be improved by implementing some supports, the main area of concern being offering assistance to clients in making phone calls.

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Date Created
  • 2014-12

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EXPANDING THE REACH OF HOMELESS PREVENTION: A STUDY OF FAITH CONGREGATION IN THE CITY OF TEMPE

Description

This project aimed to compile a comprehensive directory of faith congregations in the city of Tempe that would be willing to participate in the Interfaith Homeless Emergency Lodging Program (I-HELP).

This project aimed to compile a comprehensive directory of faith congregations in the city of Tempe that would be willing to participate in the Interfaith Homeless Emergency Lodging Program (I-HELP). I-HELP is a non-profit sector of the Tempe Community Action Agency (TCAA) that successfully houses Tempe's homeless population by the generous participation of faith congregations. 5 participants out of the 75 contacted completed the survey. These congregations were found on Google Maps and were contacted through the means of telephone, email, and personal introductions.

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Created

Date Created
  • 2014-05

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Assessing the Referral Sources of a Non-Profit Health Clinic: A Collaboration Between the WellCare Foundation and the Community Action Research Experiences Program

Description

The Community Action Research Experiences (CARE) Program collaborated with the WellCare Foundation (WCF) to assess the referral sources of the clinic in order to more effectively reach additional potential patients.

The Community Action Research Experiences (CARE) Program collaborated with the WellCare Foundation (WCF) to assess the referral sources of the clinic in order to more effectively reach additional potential patients. Archival data were analyzed from a 19-month period from the medical records of patients. Also, data were collected from interviews with the case manager of agencies that were a known referral source of WCF. These case manager interviews were completed over a one-month period. For the archival data part of the project, data were collected from 117 patients. Four representatives from community agencies participated in phone interviews. The results indicated that the most common referral sources were word of mouth, followed by community agency referrals. The results also indicated that WCF appears to have served a unique niche that is not served by other non-profit health clinics. These results led to implications for action and direction for future applied research.

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Date Created
  • 2013-05