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

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.

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

Health and Quality of Life Outcomes ◽

10.1186/s12955-021-01819-4 ◽

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.

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

International Journal of Child Youth and Family Studies ◽

10.18357/ijcyfs94201818639 ◽

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.

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“Her Illness Is a Project We Can Work on Together”

International Journal of MS Care ◽

10.7224/1537-2073.2012-022 ◽

2013 ◽

Vol 15 (3) ◽

pp. 130-136 ◽

Cited By ~ 2

Author(s):

David Rintell ◽

Richard Melito

Keyword(s):

Quality Of Life ◽

Multiple Sclerosis ◽

Crisis Intervention ◽

Family Members ◽

The Family ◽

New Diagnosis ◽

The Impact ◽

Family Centered

This article presents a model for intervening with families that are addressing a new diagnosis of multiple sclerosis (MS) in one member. The model is collaborative, integrative, and family-centered. It involves both working with the family collaboratively and providing strategies to promote greater collaboration within the family. The model integrates elements of crisis intervention theory, psycho-education, and family-centered approaches. The model was developed with families addressing MS, and was piloted with three families. The intervention was found to improve family members' ability to collaborate with each other. Such increased collaboration may enhance the family's ability to manage long-term illness more effectively, help the family address the impact of the illness on all family members, and generally improve the family's quality of life.

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Family Composition and Expressions of Family-Focused Care Needs at an Academic Memory Disorders Clinic

International Journal of Alzheimer s Disease ◽

10.1155/2013/436271 ◽

2013 ◽

Vol 2013 ◽

pp. 1-6

Author(s):

Brandalyn C. Riedel ◽

Jamie K. Ducharme ◽

David S. Geldmacher

Keyword(s):

Quality Of Life ◽

Treatment Success ◽

Family Members ◽

Family Quality Of Life ◽

Care Needs ◽

Family Unit ◽

Dementia Patients ◽

People With Dementia ◽

The Family

Objective. To understand who dementia patients identify as their family and how dementia affects family life.Background. Dementia care is often delivered in family settings, so understanding the constituency and needs of the family unit involved in care is important for determining contributors to family quality of life.Design/Methods. Seventy-seven families receiving care at an academic dementia clinic completed questionnaires regarding the affected person and the family. Responses were categorized as focused on an individual’s needs or the family’s needs.Results. Respondents identified a mean of 3.77 family members involved in care. Spouse (80.5%), daughter (58.4%), son (46.8%), and stepchild or child-in-law (37.7%) were the most frequently listed family members. Questions regarding the effect of dementia-related changes in cognition and mood were most likely to elicit a family-focused response. Questionnaire items that inquired about specific medical questions and strategies to improve family function were least likely to elicit a family-focused response.Conclusions. Both caregivers and persons with dementia frequently provided family-focused responses, supporting the construct of dementia as an illness that affects life in the family unit. This finding reinforces the potential utility of family-centered quality of life measures in assessing treatment success for people with dementia.

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

The Gerontologist ◽

10.1093/geront/gnaa022 ◽

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.

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Impact of adenotonsillectomy on the quality of life of patients operated on at the Hospital de Clínicas, Paraguay

International Journal of Medical and Surgical Sciences ◽

10.32457/ijmss.v8i4.1650 ◽

2021 ◽

pp. 1-7

Author(s):

Carlos Mena Canata ◽

Rebeca Noemí Ruiz Vallejos

Keyword(s):

Quality Of Life ◽

Obstructive Sleep Apnea ◽

Sleep Apnea ◽

Rural Areas ◽

Urban Areas ◽

Obstructive Sleep ◽

Significant Difference ◽

Before And After ◽

The Impact

The objective of this study is to determine the impact of adenotonsillectomy on the quality of life of postoperative patients.The study is observational, cross-sectional, and retrospective. The files of all postoperative adenotonsillectomy patients in Otorhinolaryngology Service, Hospital de Clínicas, San Lorenzo Paraguay. The Obstructive sleep apnea – 18 questionnaire (OSA 18) was applied, asking patients about symptoms before and after surgery. An effective sample of 143 postoperative patients was obtained. The average age was 6.05 ± 2.08 years, 55.10% (81) were male and 44.89% (66) were female, 65.30% (96) were from urban areas and 34.69% (51) from the rural areas. The t test was performed for means of two paired samples, comparing the results of the Obstructive sleep apnea – 18 questionnaire surveys before and after surgery which presented a significant difference (p <0.05) with a tendency to improve the quality of life after surgery. It has been shown that there is a significant difference, a considerable improvement in the quality of life of patients after adenotonsillectomy.

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