scholarly journals THE BACKGROUND AND DEVELOPMENT OF QUALITY OF LIFE AND FAMILY QUALITY OF LIFE: APPLYING RESEARCH, POLICY, AND PRACTICE TO INDIVIDUAL AND FAMILY LIVING

2018 ◽  
Vol 9 (4) ◽  
pp. 1-11
Author(s):  
Roy I. Brown ◽  
Alice Schippers
Keyword(s):  
Quality Of Life ◽  
Research Policy ◽  
The Other ◽  
Family Quality Of Life ◽  
Intellectual And Developmental Disabilities ◽  
Research Practice ◽  
Special Issue ◽  
Policy And Practice ◽  
Wide Range

This article introduces the concepts of quality of life and family quality of life and shows how they have developed in the field of intellectual and developmental disabilities in terms of concepts and principles. The article underscores the relevance of many of the principles and practices to a wide range of disabilities and challenges in the broad field of human development. Finally, the article provides an introduction to the other articles in this special issue, and considers their relationship to the broader areas of research, practice, and policy.

scholarly journals The Spanish Family Quality of Life Scales under and over 18 Years Old: Psychometric Properties and Families’ Perceptions

2020 ◽  
Vol 17 (21) ◽  
pp. 7808
Author(s):  
Anna Balcells-Balcells ◽  
Joana M. Mas ◽  
Natasha Baqués ◽  
Cecilia Simón ◽  
Simón García-Ventura
Keyword(s):  
Quality Of Life ◽  
Factor Analysis ◽  
Psychometric Properties ◽  
Family Quality Of Life ◽  
Intellectual And Developmental Disabilities ◽  
Validity And Reliability ◽  
Confirmatory Factor ◽  
Spanish Family ◽  
Families With Children

Background: Family quality of life (FQoL), just like individual quality of life, has become a priority outcome in the policies and services received by persons with intellectual and developmental disabilities (IDD) and their families. Conceptualizing, measuring, and theorizing FQoL has been the object of investigation in recent decades. The goal of this paper is to present a revision of the Spanish Family Quality of Life Scales, the CdVF-E < 18 and the CdVF-E >18, and describe the FQoL of Spanish families with a member with IDD. Methods: The sample included a total of 548 families with a member under 18 years old and 657 families with a member over 18. Based on an Exploratory Factor Analysis (EFA) firstly and a Confirmatory Factor Analysis (CFA) secondly, the two scales’ psychometric properties were explored. Results: The CdVF-ER < 18 and the CdVF-ER > 18 comprise 5 dimensions, containing 35 and 32 items, respectively, and they show good validity and reliability. The families obtained a high FQoL score, although some differences exist between the dimensions on which families with children under and over 18 score highest and lowest. Conclusion: The characteristics of the revised scales facilitate their use by professionals, administrations, and services.

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

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.

scholarly journals Research Commentary: A Carer’s Roadmap for Research, Practice, and Policy on Suicide, Homicide, and Self-Harm

2019 ◽  
Vol 9 (5) ◽  
pp. 48
Author(s):  
◽  
Kristin Liabo ◽  
Siobhan O’Dwyer
Keyword(s):  
Research Policy ◽  
Future Research ◽  
Research Practice ◽  
Important Research ◽  
Special Issue ◽  
Policy And Practice ◽  
The Public ◽  
Academic Researchers ◽  
Self Harm ◽  
Research Questions

Academic researchers are increasingly asked to engage with the wider world, both in terms of creating impact from their work, and in telling the world what goes on in university research departments. An aspect of this engagement involves working with patients, carers or members of the public as partners in research. This means working with them to identify important research questions and designing studies to address those questions. This commentary was jointly written by two researchers and people with relevant caring experience for this special issue. It brings to the forefront the concerns of carers who are also involved in research as partners. The aim is to highlight their perspectives to inform future research, policy, and practice.

scholarly journals Conceptualisations of wellbeing and quality of life: A systematic review of participatory studies

2021 ◽  
Author(s):  
Kate Sollis ◽  
Mandy Yap ◽  
Paul Campbell ◽  
Nicholas Biddle
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Research Policy ◽  
Target Population ◽  
Population Groups ◽  
Participatory Techniques ◽  
Wide Range ◽  
The World ◽  
Support Policy

There is a growing movement across the world to make better use of wellbeing measures to guide policy. This stems from the realisation that reliance on economic indicators, such as income, GDP, and unemployment, may not be adequately capturing the aspects of life that people value. But how should we be measuring wellbeing or quality of life? A mounting body of research over the past two decades has highlighted the value of participatory wellbeing frameworks, which are created by consulting with the target population and asking the question “What does wellbeing mean for you?”. However, up to now there is very little consolidated understanding of the work conducted in this space. This systematic review seeks to fill this gap, identifying 130 participatory wellbeing studies which span every region of the world and all life stages. The review identifies a wide range of theories, methods, and participatory techniques that have been utilised to develop participatory wellbeing frameworks which can be replicated for similar studies going forward. By thematically analysing understandings of wellbeing into 30 overarching areas, the findings show that communities and population groups throughout the world have wide-ranging and diverse conceptualisations of wellbeing. In sum, we highlight that while there are some similarities in what wellbeing means to people from different population groups, nuances exist within every group. Given this diverse understanding of wellbeing throughout the world, it is vital that research, policy and development initiatives take this into account. Doing so will help support policy and programs to address the aspects of life that are important to individuals, and subsequently improve the lives of people throughout the world in a more meaningful way.

Quality of Life of Australian Family Carers: Implications for Research, Policy, and Practice

2009 ◽  
Vol 6 (3) ◽  
pp. 189-198 ◽  
Author(s):  
Rosanne Burton-Smith ◽  
Keith R. McVilly ◽  
Marie Yazbeck ◽  
Trevor R. Parmenter ◽  
Takako Tsutsui
Keyword(s):  
Quality Of Life ◽  
Research Policy ◽  
Family Carers ◽  
Policy And Practice ◽  
Australian Family

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.

scholarly journals Comparative parenting stress measures between segmental and community-based rehabilitation services in parents of children and adolescents with intellectual and developmental disabilities (IDD): A cross-sectional survey

2021 ◽  
pp. 1-5
Author(s):  
Mikyoung Kim ◽  
Chanhee Park ◽  
Myungsook Park ◽  
Joshua (Sung) H. You
Keyword(s):  
Quality Of Life ◽  
Parenting Stress ◽  
Well Being ◽  
Rehabilitation Service ◽  
Family Quality Of Life ◽  
Intellectual And Developmental Disabilities ◽  
Community Based ◽  
Cross Sectional ◽  
Community Based Rehabilitation

BACKGROUND: There is a dearth of information on the effects of different types (Segmental rehabilitation service (SRS) vs Community-based rehabilitation service (CRS)) on the parenting stress and family quality of life in parents of children who have individuals with intellectual and developmental disabilities (IDD). OBJECTIVE: This paper is to compare the effects of SRS and CRS on parenting stress and family quality of life in parents of individuals with IDD. METHODS: A cross-sectional design was used to examine parenting stress and family quality life in cohorts of 120 fathers and mothers of children with IDD who had received either SRS or CRS participated in the survey. The outcome measures included the modified Parenting Stress Index (PSI) and the modified Beach Center Family Quality of Life Scale (mBCFQLS). The Mann-Whitney U test was performed at P< 0.05. RESULTS: A significant difference was observed in social stress in PSI between the SRS and CRS groups (P= 0.03). The child rearing, emotional well-being, and physical and material well-being variables in mBCFQLS were different between the SRS and CRS groups (P< 0.05), indicating superior benefits from CRS than SRS. CONCLUSIONS: These findings provide important information and about parenting stress and family quality of life in children with IDD, for developing effective rehabilitation programs and services for these parents.

CREATING WALKING LED TRANSIT STATIONS FOR WOMEN IN MALAYSIA

2020 ◽  
Vol 7 (1) ◽  
pp. 99
Author(s):  
Yong Adilah Shamsul Harumain ◽  
Nur Farhana Azmi ◽  
Suhaini Yusoff
Keyword(s):  
Quality Of Life ◽  
Developing Countries ◽  
Public Transportation ◽  
Carbon Emission ◽  
The Other ◽  
Walking Distance ◽  
The Road ◽  
On The Road ◽  
Female User

Transit stations are generally well known as nodes of spaces where percentage of people walking are relatively high. The issue is do more planning is actually given to create walkability. Creating walking led transit stations involves planning of walking distance, providing facilities like pathways, toilets, seating and lighting. On the other hand, creating walking led transit station for women uncover a new epitome. Walking becomes one of the most important forms of mobility for women in developing countries nowadays. Encouraging women to use public transportation is not just about another effort to promote the use of public transportation but also another great endeavour to reduce numbers of traffic on the road. This also means, creating an effort to control accidents rate, reducing carbon emission, improving health and eventually, developing the quality of life. Hence, in this paper, we sought first to find out the factors that motivate women to walk at transit stations in Malaysia. A questionnaire survey with 562 female user of Light Railway Transit (LRT) was conducted at LRT stations along Kelana Jaya Line. Both built and non-built environment characteristics, particularly distance, safety and facilities were found as factors that are consistently associated with women walkability. With these findings, the paper highlights the criteria  which are needed to create and make betterment of transit stations not just for women but also for walkability in general.

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