scholarly journals Caregivers’ Perceptions of Family Quality of Life of Individuals with Developmental Disabilities Comorbid with Dementia: A Pilot Study

2020 ◽  
Vol 3 (2) ◽  
pp. 56-70
Author(s):  
Christina MARSACK-TOPOLEWSKI ◽  
Preethy SAMUEL
Keyword(s):  
Quality Of Life ◽  
Pilot Study ◽  
Developmental Disabilities ◽  
Family Quality Of Life

“I Would Like to Have a Normal Brother but I’m Happy With the Brother That I Have”: A Pilot Study About Intellectual Disabilities and Family Quality of Life From the Perspective of Siblings

2021 ◽  
pp. 0192513X2110428
Author(s):  
Raquel A. Correia ◽  
Maria João Seabra-Santos
Keyword(s):  
Quality Of Life ◽  
Pilot Study ◽  
Intellectual Disabilities ◽  
Family Relationships ◽  
Leisure Activities ◽  
Well Being ◽  
Family Quality Of Life ◽  
Adult Sibling ◽  
The Disabled

The relationships between siblings are the most long-lasting in families. When one of the siblings is a person with intellectual disabilities (ID), this relationship assumes an even more important role since this brother/sister will most likely become the disabled individual’s main caregiver. This pilot study had two aims: to explore the experience as an adolescent or adult sibling of a person with ID and to understand the perceptions of these siblings about quality of life as a sibling and about family quality of life. In-depth interviews were conducted with six siblings. The results showed that the experience of a sibling is positive and the acceptance process is of extreme importance. The domains which, from the sibling perspective, contribute to family quality of life are as follows: Family relationships, Acceptance, Health, Influence of values, Financial well-being, Support from others, and Leisure activities. The implications of these findings for intervention are pointed out.

Exploring Patterns of Advocacy and Well-Being of Parents of Children With Intellectual and Developmental Disabilities

2021 ◽  
Vol 59 (6) ◽  
pp. 459-471
Author(s):  
Kristina Rios ◽  
Janeth Aleman-Tovar ◽  
Meghan Burke
Keyword(s):  
Quality Of Life ◽  
Developmental Disabilities ◽  
Well Being ◽  
Marital Relationships ◽  
Future Research ◽  
Family Quality Of Life ◽  
Intellectual And Developmental Disabilities ◽  
Structured Interviews ◽  
Research And Practice

Abstract Advocacy is often an expectation for parents of children with intellectual and developmental disabilities (IDD). However, little is known about how advocacy may impact parent well-being, including stress, family dynamics, and marital relationships. By exploring the effects of advocacy on well-being, interventions can be implemented to support both the advocacy and well-being of parents of children with IDD. To this end, the purpose of the study was to explore the pattern between positive and negative advocacy experiences of parents of children with IDD and the well-being of parents, families, and marriages. Semi-structured interviews were conducted with 38 parents of children with IDD. Regardless of the nature (i.e., positive, or negative) of the advocacy experience, participants reported that advocacy increased their stress. When the advocacy experience was positive, some participants reported improved family quality of life. Also, regardless of the nature of the advocacy experience, some participants reported feeling frustration within their marital relationships. Implications for future research and practice are discussed.

Using Photovoice as a method for assessing the quality of life of individuals impacted by gynecologic malignancies: A pilot study

2010 ◽  
Author(s):  
Megan Lipe ◽  
Deidre Pereira ◽  
Stacy Dodd ◽  
Tim Sannes ◽  
Michelle Bishop ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Pilot Study ◽  
Gynecologic Malignancies
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