How do skin diseases affect the family quality of life?

As families are increasingly recognized as the primary caregivers for their family members with disabilities, family quality of life (FQOL) research has focused on the impact of disability within the family. This field of research seeks to gain an understanding of the complex challenges and successes families have, with the goal of assisting families in expanding their FQOL. To accomplish this task, the FQOL survey (FQOL-2006) was created. Developed in 2000 and later revised, the FQOL-2006 survey has been used in over 20 countries to explore the perceptions of families, parents, and main caregivers of individuals with intellectual and developmental disabilities. While there has been considerable research using the FQOL-2006 survey, there is limited research that focuses on integrating the survey into practice. This article discusses a possible application of the survey in practical contexts by reflecting on some of the qualitative data collected from my recent FQOL master’s thesis study. Specifically, the article highlights the mutual benefits that service providers and families could receive by integrating the FQOL-2006 survey into service models, as it could allow professionals to establish a framework for assessing each client-family’s overall quality of life, including their greatest supports, strengths, challenges, and needs. This application provides a new research opportunity for the FQOL field for both researchers and professionals.

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Parental Stress and Family Quality of Life: Surveying Family Members of Persons with Intellectual Disabilities

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph17239007 ◽

2020 ◽

Vol 17 (23) ◽

pp. 9007

Author(s):

Cristina Jenaro ◽

Noelia Flores ◽

Belén Gutiérrez-Bermejo ◽

Vanessa Vega ◽

Carmen Pérez ◽

...

Keyword(s):

Quality Of Life ◽

Intellectual Disability ◽

Parenting Stress ◽

Parental Stress ◽

Family Members ◽

Family Quality Of Life ◽

Quality Of Life Scale ◽

The Family ◽

The Impact

(1) Background. This study assesses the quality of life in families with a member with an intellectual disability using the Family Adjustment and Adaptation Response framework. (2) Methods. The study included 515 Spanish participants whose family members with disabilities range in age from infancy to adulthood. We hypothesized that it is possible to predict parenting stress by paying attention to the meaning families give to themselves and their circumstances while controlling for the impact of other variables such as family capabilities and characteristics of the family member with disabilities. We used the Beach Center Family Quality of Life Scale and the section on Exceptional needs of medical and behavioral support from the Supports Intensity Scale, together with other potential predictors. The subscale on parental stress from the Parenting Stress Index–Short Form was utilized as a criterion measure. (3) Results. Hierarchical multiple regression analysis revealed that 49% of parental stress was predicted by dysfunctional interaction, difficult behaviors, low emotional wellbeing, poor family interaction, as well as kinship as parents, and the severity of both the medical needs and intellectual disability. (4) Conclusions. The stress experienced by those families is mostly predicted by the meaning they give to themselves and their circumstances. Implications of these findings for service delivery are discussed.

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Families raising a child with disability – Social and cultural and political considerations: Israeli Jewish and Arab Families

Men Disability Society ◽

10.5604/01.3001.0012.0325 ◽

2017 ◽

Vol 4 (38) ◽

pp. 5-21

Author(s):

Dana Roth ◽

Ivan Brown

Keyword(s):

Quality Of Life ◽

Family Quality Of Life ◽

Minority Populations ◽

Policy And Practice ◽

Political Status ◽

The Family ◽

Almost All ◽

General Service ◽

Child With A Disability

Social, political, and cultural realities have an effect on all members of society. For families with a child with disability there are additional challenges. Being a minority family with a child with a disability adds to the challenges. This study compares the family quality of life (FQOL) of families with a child with disability in Jewish and Arab communities in Israel. Main caregivers of children with disabilities of 158 Jewish and 105 Arab Israeli responded to the Family Quality of Life Survey, which operationalizes FQOL as a construct of six measurement dimensions in nine core family life domains. Overall, Jewish families in Israel reported higher FQOL than Arab families. Although eight of the nine domains were rated highly for Importance, the main outcome measures Attainment and Satisfaction were rated lower for almost all domains. Some domains contributed to overall differences more than others. The patterns also differed for the Jewish and Arab families. Social/cultural/political status of families are important for policy and practice professionals to consider as having possible impact on the family of a child with a disability. Further research is needed to develop application models for addressing the needs of minority populations in designing programs into the general service delivery system.

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Family Planning Village: From Gapura to Family Quality of Life

KOLOKIUM: Jurnal Pendidikan Luar Sekolah ◽

10.24036/kolokium-pls.v8i2.433 ◽

2020 ◽

Vol 8 (2) ◽

pp. 103-113

Author(s):

Mohammad Tohirin Hasan ◽

Iswandi Iswandi

Keyword(s):

Quality Of Life ◽

Family Planning ◽

Literature Review ◽

Family Life ◽

Life Quality ◽

Family Quality Of Life ◽

Budget Support ◽

The Family ◽

Quality Of Family Life

Since its launch in 2016, the Family Planning Village (Kampung KB) has experienced interesting dynamics in the field. The number of KB Kampung is increasing every year. One of the goals of the KB Village is to improve the family quality of life. Quality of life consist of the physical, emotional, social, intellectual, spiritual, and environmental dimensions. This literature review research explores two questions: (1) how is the implementation of KB Kampung in the field; (2) What are the implications of Kampung KB for the quality of family life. By using Crossref and Google Scholar, 97 writings on the theme of Kampung KB were obtained. After the exclusion, there were 33 papers that were relevant to the purpose of this study, only 23 papers were obtained which were used as exploration material. The results of the analysis show several things. First, Kampung KB has been implemented with various obstacles and opportunities. Some that are often encountered are: lack of understanding of the managers, lack of budget support, and low continuity of activities. Second, although the community has felt the benefits, the programs and activities have not had too many implications for the family quality of life.

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Family Quality of Life Among Families with a Member Diagnosed with CLD – What to Expect?

Internal Medicine ◽

10.2478/inmed-2019-0066 ◽

2019 ◽

Vol 16 (3) ◽

pp. 23-36

Author(s):

Adina Rusu ◽

Ionuţ-Ovidiu Rusu ◽

Amalia Loredana Călinoiu ◽

Lăcrămioara Aurelia Brîndușe ◽

Dana Galieta Mincă

Keyword(s):

Quality Of Life ◽

Liver Cirrhosis ◽

Liver Disease ◽

Chronic Liver Disease ◽

Disease Diagnosis ◽

Chronic Liver ◽

Population Characteristics ◽

Family Quality Of Life ◽

The Family

AbstractBackground and objectives. Health-related quality of life (HRQoL) is a very important outcome in patients with chronic liver disease. Thus, the present study attempts to assess the family quality of life of these patients, since it is well known that families have always represented the primary environment of most people.Matherial and methods. A sample of 30 participants with a family member who had CLD were recruited to be interviewed through the Romanian adaptation of the Family Quality of Life Survey – general version 2006 (FQOLS-2006), an evaluation tool developed in Canada with the purpose of studying families’ quality of life among. Primary caregivers completed the FQOL Survey. The data was analysed to describe population characteristics and to explore the relationship between the main domains and dimensions of QoL and the patients and caregivers characteristics.Results. The findings showed highest domain scores for Support from services and Family relationships and lowest for Support from others. Dimension scores were highest for Importance and lowest for Stability. Overall FQOL approximated average (78.5±13.4). Younger patients scored lower rates of FQOL domains. Alcohol-related liver disease led to lower rates of all the domains, except from Support from others and Leisure and Recreation activities. Patients with liver cirrhosis or liver cancer negatively influence their caregiver’s success in career. Also, families of liver cirrhosis patients reported the lowest level of satisfaction among all respondents.Conclusions. The results of this study suggest that there are some significant areas of family life highly influenced by a chronic liver disease diagnosis in one of their members.

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