scholarly journals FAMILY QUALITY OF LIFE IN PRACTICE: A PRACTICAL APPLICATION OF THE FQOL-2006 SURVEY

2018 ◽  
Vol 9 (4) ◽  
pp. 40-48
Author(s):  
Kierstyn Butler
Keyword(s):  
Quality Of Life ◽  
Service Providers ◽  
Family Quality Of Life ◽  
Practical Application ◽  
The Family ◽  
Master's Thesis ◽  
Research Opportunity ◽  
New Research ◽  
The Impact

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.

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

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.

Development and Validation of the Family Quality of Life in Dementia Scale

2020 ◽  
Author(s):  
Karen M Rose ◽  
Ishan C Williams ◽  
Joel G Anderson ◽  
David S Geldmacher
Keyword(s):  
Quality Of Life ◽  
Psychological Symptoms ◽  
Psychometric Testing ◽  
Psychometric Evaluation ◽  
Face Validity ◽  
Major Influence ◽  
Family Quality Of Life ◽  
The Family ◽  
The Impact

Abstract Background and Objectives People with Alzheimer’s disease and related dementias (ADRD) exhibit losses in daily function, as well as behavioral and psychological symptoms, that place a great deal of burden on family caregivers and exert a major influence on the quality of life of these individuals and their families. Despite years of intervention research in the field, there are few studies related to the impact of providing care for a person with ADRD on the family as the unit of analysis. While numerous findings have reported the effects of the chronic stress of caregiving for an individual, analysis of family quality of life is a concept that has been generally overlooked in the ADRD field. The purpose of the present study was to develop and test the Family Quality of Life in Dementia (FQOL-D) scale. Research Design and Methods Face validity was obtained via a Delphi survey of a multidisciplinary team of dementia providers and researchers; initial psychometric evaluation of the instrument was obtained via family respondents (N = 244). Results Internal consistency and reliability were established for the instrument. The FQOL-D scale exhibited excellent factorability and concurrent validity with existing scales assessing family psychosocial measures. Discussion and Implications The initial psychometric testing of the FQOL-D instrument is favorable. Additional use of the FQOL-D instrument in health care settings is warranted to evaluate further the clinical utility of the instrument.

scholarly journals 416 - Family quality of life in Neurodegenerative Diseases and associated factors

2021 ◽  
Vol 33 (S1) ◽  
pp. 39-39
Author(s):  
Eva González ◽  
Alba Aza ◽  
Isabel Vicario-Molina ◽  
María Gómez-Vela ◽  
Mª Begoña Orgaz ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Neurodegenerative Diseases ◽  
Rural Areas ◽  
Family Members ◽  
Explanatory Models ◽  
Border Region ◽  
Family Quality Of Life ◽  
The Family ◽  
The Impact

Introduction:Neurodegenerative diseases (NDs) are one of the major causes of dependency among older people. Since family members assume most of the care, the impact of NDs goes beyond the patient and affects the functioning of the entire family. Nonetheless, the concept of Family Quality of Life (FQOL) is still insufficiently developed in this field: the literature has focused on family caregivers from an individual perspective, paying less attention to the family unit. Hence, the objectives were to describe FQOL of people with NDs and to identify factors associated, from a holistic point of view.Method:The sample consisted of 300 family members of patients with NDs (70% females; mean age: 62.4) living in the cross-border region of Spain-Portugal, mostly in rural areas. The majority were primary caregivers. They completed the FQOLS–ND via telephone. This survey examined how the family perceived its FQOL at the global and domain-level, in terms of attainment and satisfaction (measured on a 5-point Likert scale). It also collected data on diverse respondents’ and family characteristics.Results:The average score in Global FQOL was 3.65 (SD = 0.70) for attainment and 3.69 (SD = 0.47) for satisfaction. By domains, the highest value was found in Family Relations and the lowest in Support from services. Twenty hierarchical multiple regressions examined the potential predictors of Global FQOL and the nine domains for attainment and satisfaction. Medium predictive values (from R2=.14 to R2=.20) were found in Financial wellbeing (satisfaction), Support from services, and Leisure. The number of perceived barriers to social-health services was a significant predictor in all the explanatory models (the most frequently cited being: long wait for service, services not available, problems with transportation, lack of information, and financial costs).Conclusions:These results confirm that NDs are especially challenging in rural areas, where families feel more isolated and have fewer opportunities to receive professional support. Therefore, there is a need to design of a specific portfolio of services, resources and benefits that involves the key sectors of family welfare (public, private, third sector and family) and brings them closer to these areas, covering all the needs.

scholarly journals Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
R. Shah ◽  
F. M. Ali ◽  
A. Y. Finlay ◽  
M. S. Salek
Keyword(s):  
Quality Of Life ◽  
Family Members ◽  
Unmet Need ◽  
Reliability And Validity ◽  
Chronic Health Condition ◽  
Family Quality Of Life ◽  
Good Reliability ◽  
Huge Impact ◽  
The Impact

Abstract Background A person’s chronic health condition or disability can have a huge impact on the quality of life (QoL) of the whole family, but this important impact is often ignored. This literature review aims to understand the impact of patients' disease on family members across all medical specialities, and appraise existing generic and disease-specific family quality of life (QoL) measures. Methods The databases Medline, EMBASE, CINHAL, ASSIA, PsycINFO and Scopus were searched for original articles in English measuring the impact of health conditions on patients' family members/partner using a valid instrument. Results Of 114 articles screened, 86 met the inclusion criteria. They explored the impact of a relative's disease on 14,661 family members, mostly 'parents' or 'mothers', using 50 different instruments across 18 specialities including neurology, oncology and dermatology, in 33 countries including the USA, China and Australia. These studies revealed a huge impact of patients' illness on family members. An appraisal of family QoL instruments identified 48 instruments, 42 disease/speciality specific and six generic measures. Five of the six generics are aimed at carers of children, people with disability or restricted to chronic disease. The only generic instrument that measures the impact of any condition on family members across all specialities is the Family Reported Outcome Measure (FROM-16). Although most instruments demonstrated good reliability and validity, only 11 reported responsiveness and only one reported the minimal clinically important difference. Conclusions Family members' QoL is greatly impacted by a relative's condition. To support family members, there is a need for a generic tool that offers flexibility and brevity for use in clinical settings across all areas of medicine. FROM-16 could be the tool of choice, provided its robustness is demonstrated with further validation of its psychometric properties.

scholarly journals The impact of dental caries and its treatment under general anaesthetic on children and their families

2020 ◽  
Author(s):  
R. Knapp ◽  
Z. Marshman ◽  
F. Gilchrist ◽  
H. Rodd
Keyword(s):  
Quality Of Life ◽  
Dental Caries ◽  
Health Utility ◽  
General Anaesthetic ◽  
Family Impact ◽  
Score Difference ◽  
The Family ◽  
Related Quality ◽  
The Impact

Abstract Objective To assess the impact of dental caries and treatment under general anaesthetic (GA) on the everyday lives of children and their families, using child-reported measures of quality of life (QoL) and oral health-related quality of life (OHRQoL). Method Participants, aged 5–16 years old having treatment for dental caries under GA, were recruited from new patient clinics at Charles Clifford Dental Hospital, Sheffield. OHRQoL was measured before and 3-months after treatment using the Caries Impacts and Experiences Questionnaire for Children (CARIES-QC). Overall QoL was measured using the Child Health Utility 9D (CHU9D). Parents/caregivers completed the Family Impact Scale (FIS). Results Eighty five parent–child dyads completed the study. There was statistically significant improvement in OHRQoL (mean interval score difference in CARIES-QC = 4.43, p < 0.001) and QoL (mean score difference in CHU9D = 2.48, p < 0.001) following treatment, with moderate to large effect sizes. There was statistically significant improvement in FIS scores (mean score difference = 5.48, p = 0.03). Conclusions Treatment under GA was associated with improvement in QoL and OHRQoL as reported by children, and reduced impacts on the family. This work highlights the importance of GA services in reducing the caries-related impacts experienced by children. Further work is needed investigate the impact of clinical, environmental and individual factors.

A criança com doença falciforme e a família: revisão integrativa

2016 ◽  
Vol 15 (2) ◽  
Author(s):  
Elaine Cristina Rodrigues Gesteira ◽  
Regina Szylit Bousso ◽  
Maira Deguer Misko ◽  
Carolliny Rossi de Faria Ichikawa ◽  
Patrícia Peres de Oliveira
Keyword(s):  
Quality Of Life ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Family Relations ◽  
Scientific Evidence ◽  
Cell Disease ◽  
Psychosocial Effects ◽  
The Family ◽  
The Impact

Aim:  To  identify  scientific  evidence  about  families  of  children  with sickle  cell  disease.  Method:  An  integrative  review  of  the  search  used the  following descriptors:  anemia  sickle  cell;  hemoglobin  SC  disease;  hemoglobin sickle;  family; family  relations;  and,  child.  The  search  was  carried  out  for  literature  in  Portuguese, English,  and  Spanish.  The  search  used  databases  such  as  MEDLINE,  LILACS,  CINAHL, and PubMed, and looked for articles published between January 2005 and January 2015. Results:   There   were   16   articles   selected  that   originated  the   following  thematic categories: the impact of sickle cell disease on the family, psychosocial effects on family dynamics,  child's  quality  of  life,  and  family  and  social  support/support  networks. Discussion:  The  studies  report  that  the  family  remains  the  main  provider  of  care  for children  with  sickle  cell  disease,  and  that  families  faces  challenges  in  achieving comprehensive care and fighting for their children’s quality of life. C onclusion: This evidence  will  provide  support  for  multi-professional  teams  in the  construction  of continuous care for the families of children who are sickle cell patients.

The Impact of Childhood Atopic Dermatitis on Quality of Life of the Family

2000 ◽  
Vol 1 (4) ◽  
pp. 173-178 ◽  
Author(s):  
D. Staab ◽  
U. von Rüden ◽  
R. Kehrt ◽  
U. Wahn
Keyword(s):  
Quality Of Life ◽  
Atopic Dermatitis ◽  
The Family ◽  
The Impact

scholarly journals The Impact of Pediatric Epilepsy on Children and Families: A Multicenter Cross-Sectional Study

2018 ◽  
Vol 14 (1) ◽  
pp. 323-333 ◽  
Author(s):  
Ahmed Hussein Subki ◽  
Abdel Moniem Mukhtar ◽  
Rakan Salah Al-Harbi ◽  
Abdulaziz Khaled Alotaibi ◽  
Faisal Ghazi Mosaad ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cross Sectional Study ◽  
Pediatric Epilepsy ◽  
Children And Families ◽  
Cross Sectional ◽  
The Family ◽  
The Mean ◽  
The Impact ◽  
Self Administered Questionnaire

Background and Objectives: Epilepsy is considered one of the most prevalent causes of morbidity in children. The aim of this study is to determine how epilepsy impacts the lives of children with epilepsy and their families. Methods: A translated version of the “Impact of Pediatric Epilepsy Scale” (IPES) questionnaire was completed by the 80 mothers of children with epilepsy, recruited at three hospitals in Jeddah, Saudi Arabia This is a validated self-administered questionnaire used to assess the impact of epilepsy on the lives of the child and family, as well as the quality of life (QoL) of the child. Results: The mean age of children epilepsy was 6.32 years (SD = 3.22). The mean IPES score was 6.28 (SD = 8.42) and the mean child’s QoL was 2.85 (SD= 0.83). 87.5% of the mothers rated their child’s QoL as low. IPES score was significantly associated with cause of seizure (β=0.259; 95%-CI= 0.263 - 10.334; p = 0.039). Child’s QoL was significantly associated with frequency of seizure (β=0.251; 95%-CI= 0.016 - 0.568; p= 0.039) and child’s nationality (β=-0.270; 95%-CI -0.252, -0.013; p= 0.031). Conclusions: Pediatric epilepsy may have a greater impact on the lives of the child and the family when it is not comorbid with cerebral palsy. Quality of life tends to be lower for non-Saudi children, and children with more frequent seizures. Therefore, these groups may need more support in managing the impact that epilepsy has on their daily functioning and quality of life.

scholarly journals Down syndrome – a challenge for Latvian health care and education system

2018 ◽  
Vol 51 ◽  
pp. 03008
Author(s):  
Julija Cirule-Galuza ◽  
Strale Ilze ◽  
Solvita Jegorenko ◽  
Liga Priedena ◽  
Erika Gintere ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Down Syndrome ◽  
Family Environment ◽  
Genetic Disorder ◽  
Economic Effect ◽  
Institutional Care ◽  
Rehabilitation Services ◽  
The Family ◽  
The Impact

Down syndrome (DS) is a genetic disorder. From 1997 to 2015, 473 DS patients were born in Latvia. Prenatal diagnosis allows terminating pregnancies with high risk of DS. The aim of our research was to assess the impact of environmental quality (family and extra-familial care) on the child's development, range of services for DS patients, and to identify the optimal early support system. Families and specialists were interviewed to analyze differences between children in families and institutional care clients. State financial support for a DS child in the family is less than to a child in institutional care, and does not provide adequate rehabilitation services. Conclusion: the environment (family/institution, available resources, and rehabilitation services) where the child grows up after the birth, determines both their quality of life and level of independence development. If the somatic problem-solving path is clear, then social integration needs to be improved. Support of inter-professional teams for the families is necessary immediately after the diagnostic statement in order to ensure a more favourable family environment and to reduce the risk of institutionalization. Despite the potentially higher early intensive rehabilitation costs, in the course of time we can predict that it will provide an economic effect on the state and improve the patient and their family's quality of life.

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