scholarly journals The impact on parents of having a child with haemophilia

2016 ◽  
Vol 3 (2) ◽  
pp. 4-14 ◽  
Author(s):  
Kate Khair ◽  
Steve Chaplin
Keyword(s):  
Literature Review ◽  
Health Professionals ◽  
Observational Studies ◽  
Intervention Studies ◽  
Well Being ◽  
Family Quality Of Life ◽  
Appropriate Treatment ◽  
The Family ◽  
The Impact

Abstract Wider access to modern treatment of haemophilia has led to a growing interest in the family’s role in management. An increasing amount of research has sought to understand the psychosocial impact of living with a child with haemophilia. Understanding how such demands affect parents and families who live with the daily threat of bleeding can help health professionals to provide effective support. A literature review was undertaken with the aim of summarising the key findings from studies published since 2000. The literature review describes many common themes from observational studies that were generally consistent with those emerging from interviews of parents of children with haemophilia. Few intervention studies were identified. Overall, this evidence shows that raising a child with haemophilia can be challenging for parents and the family. Quality of life is impaired in the parents of a child with haemophilia and that many aspects of life are affected. However, providing care can also be rewarding and programmes of support, education and appropriate treatment evidently improve the well-being of parents and families.

Impact of Design on Emotional, Psychological, or Social Well-Being for People With Cognitive Impairment

2018 ◽  
Vol 12 (3) ◽  
pp. 220-232 ◽  
Author(s):  
Elizabeth Karol ◽  
Dianne Smith
Keyword(s):  
Quality Of Life ◽  
Cognitive Impairment ◽  
Literature Review ◽  
Thermal Comfort ◽  
Well Being ◽  
Design Expertise ◽  
Relationship Of ◽  
The Impact ◽  
The Relationship

Aim:The objective of this article is to identify and analyze what is known about characteristics in and around the home that support well-being for those with cognitive impairment. This could provide direction for designers of homes in general, but specifically for designers trying to meet the needs of people with cognitive impairment.Background:It has been established that there is a relationship between psychological well-being and a person’s environment. Research also shows that particular design aspects can reduce the impact of cognitive impairment. However, there is limited design expertise in the Australian housing market to create supportive spaces which will help to reduce the impact of the disability for those with cognitive impairment.Method:A literature review was carried out to determine the extent and details of what is known about the relationship of home design and its impact on emotional, psychological, or social well-being for people with cognitive impairment.Conclusions:The study indicates that researchers in various disciplines understand that pragmatic design inputs such as thermal comfort and adequate lighting are important for people with cognitive impairment. In addition, some researchers have shown or surmise that there are other “intangible” designer-controlled elements that have beneficial impacts on people with cognitive impairment. Details of these intangible elements are sparse, and how much they might improve the quality of life for a person with cognitive impairment is not well understood. Further research is required to meet a growing need.

scholarly journals The scientific study of happiness and health promotion: an integrative literature review

2010 ◽  
Vol 18 (3) ◽  
pp. 472-479 ◽  
Author(s):  
Fabio Scorsolini-Comin ◽  
Manoel Antônio dos Santos
Keyword(s):  
Quality Of Life ◽  
Health Promotion ◽  
Health Professionals ◽  
Well Being ◽  
Scientific Study ◽  
Subjective Well Being ◽  
Exclusion Criteria ◽  
Health Area ◽  
The Impact

The article aims to trace the profile of publications concerning the concept of subjective well-being (SWB), considered the scientific study of happiness, as well as discussing the impact of this accumulated understanding on health promotion. The revision was carried out in the databases PubMed, MedLine, PsycINFO, SciELO, LILACS and PEPSIC using the descriptor subjective well-being. Articles published in indexed periodicals between 1970 and 2008 were selected. From the inclusion/exclusion criteria 19 publications were selected in full for discussion. Of these, the majority were related to the health area and did not approach the concept of SWB directly, but touched on this together with the notions of well-being, satisfaction and quality of life. There were few publications that approached the term conceptually or that defined the instruments used for the assessment of SWB. Concluding, the results confirm the relevance of the theme for health promotion and the necessity of investigations related to the practices of health professionals .

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.

scholarly journals Impact of the use of the internet on quality of life in older adults: review of literature

2020 ◽  
Vol 21 ◽  
Author(s):  
Bhumika Aggarwal ◽  
Qian Xiong ◽  
Elisabeth Schroeder-Butterfill
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Information Technology ◽  
Literature Review ◽  
Internet Use ◽  
Well Being ◽  
The Internet ◽  
Use Of Internet ◽  
The Impact

Abstract Aim: Given the paucity of data on the use of internet and quality of life (QoL), this literature review aimed to identify the motivations and barriers for internet use and the impact on QoL on older adults using the internet. Background: Even though older adults are increasingly using information technology, the numbers remain quite small globally. Currently published research primarily focuses on the various ways and methods of information technology use by older adults and the factors influencing use rather than on the impact of information technology on QoL of older adults. Methods: The studies included in this literature review were searched in three databases: WEB of Science, GoogleScholar and PubMed. English language articles were searched using the terms ‘older’, ‘elderly’, ‘senior’, ‘well-being’, ‘life satisfaction’, ‘quality of life’, ‘internet’ and “computer”. Findings: The review demonstrated the association of internet use on QoL in older adults. The majority of the studies substantiate the advantages of internet use by older adults including the ability to communicate with family and friends, maintain a wide social network, have access to information and participate in online leisure activities. There are some studies, though less in number, which did not find a relationship between well-being and use of internet by older adults. The policy implications of this review advocate a multidimensional strategy to support internet use by the older people incorporating internet training and education, financial issues, technical support and access needs to be developed.

scholarly journals International professional practices in mental health, organization of psychiatric care, and COVID-19: A survey protocol

PLoS ONE ◽  
2021 ◽  
Vol 16 (12) ◽  
pp. e0261818
Author(s):  
Laurence Fond-Harmant ◽  
Hélène Kane ◽  
Jade Gourret Baumgart ◽  
Emmanuel Rusch ◽  
Hervé Breton ◽  
...  
Keyword(s):  
Mental Health ◽  
Mental Health Professionals ◽  
Health Professionals ◽  
Well Being ◽  
Digital Tools ◽  
List Type ◽  
Ongoing Research ◽  
Numerical Tools ◽  
The Impact

Objective Our project aims to provide: an overview of the impact of the COVID-19 pandemic on the field of mental health professionals in 23 countries; a model of recommendations for good practice and proposals for methods and digital tools to improve the well-being at work of mental health professionals and the quality of services offered during crisis and post-crisis periods; an in-depth ethics review of the assessment of the use of numerical tools for psychiatry professionals and patient support, including teleconsulting. Methods This is a large international survey conducted among 2,000 mental health professionals in 23 countries over a 12-month period. This survey will be based on 30 individual interviews and 20 focus group sessions, and a digital questionnaire will be sent online to 2,000 professionals based on the criteria of gender, age, professional experience, psychiatric specialty, context of work in psychiatry, and geographical location. Regarding the development of telepsychiatry during the COVID-19 pandemic, a pilot study on the use of digital tools will be carried out on 100 clients of psychiatry professionals in France and Belgium. Discussion-conclusion This study will contribute to the co-construction of an international organization and monitoring system that takes into account psychiatric health professionals as major resources to fight against the COVID-19 pandemic and to develop efficient processes for preparing and anticipating crises by reducing psychosocial risks as much as possible. This project also aims to design tools for remote medicine and to develop the use of numerical tools for monitoring and supporting professionals and helping professionals to build the conditions for satisfactory operational work during crises and post-crisis situations, using adapted organizational methods. Our ongoing research should support professionals in the search for existing concrete solutions to cope with emergency work situations while maintaining an optimal quality of life.

scholarly journals Family Planning Village: From Gapura to Family Quality of Life

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.

scholarly journals Does mindfulness intervention improve quality of life in adults with non-malignant chronic pain

2021 ◽  
Author(s):  
◽  
Nikolay Kondratyev
Keyword(s):  
Quality Of Life ◽  
Chronic Pain ◽  
Literature Review ◽  
Well Being ◽  
Relevant Information ◽  
Primary Care Providers ◽  
Future Research ◽  
Care Providers ◽  
The Impact

Chronic pain is a significant problem that negatively affects quality of life resulting in distress, disability, and inappropriate prescription of analgesics. Primary care providers need evidence for non-pharmaceutical tools, such as mindfulness-based intervention, to manage the complexities of chronic pain. The purpose of this integrative literature review is to investigate the impact mindfulness may have on the quality of life of subjects with chronic pain. A background of relevant information is presented regarding chronic pain, quality of life, and mindfulness. Thereafter, a comprehensive search revealed 14 studies in this integrative literature review. Key findings include that there is low to moderate quality evidence that mindfulness improves QOL, especially in the domains of mental well-being. Overall, mindfulness can be an effective tool for individuals that are currently on pharmacological monotherapy. The study concludes with recommendations for future research and practice.

scholarly journals 462 - Exploratory study of the adequacy and sufficiency of support for families with a member with neurodegenerative disease

2020 ◽  
Vol 32 (S1) ◽  
pp. 183-183
Author(s):  
Estrella Montes-López ◽  
Eva María Picado-Valverde ◽  
Amaia Yurrebaso-Macho ◽  
Keyword(s):  
Family Relationships ◽  
Social Service ◽  
Support Services ◽  
Rural Areas ◽  
Well Being ◽  
Family Quality Of Life ◽  
Border Area ◽  
Cross Border ◽  
The Family ◽  
The Impact

Background:Neurodegenerative diseases (ND) are chronic pathologies that generate great limitations and disabilities in the person and other effects on the Family Quality of Life (FQoL). FQoL is a multidimensional concept that includes health of the family, financial well-being, family relationships, informal support, support from care services, the influence of values, leisure and recreation, and community interaction. Several studies have demonstrated the impact that the absence of supports has on the FQoL.Objective:This research aims to explore, from the perspective of social service professionals, to what extent the service supports available to people with ND and their families in the Spain-Portugal cross-border area are adequate and sufficient to contribute to the improvement of the FQoL.Method:Qualitative methodology has been implemented. Specifically, a focus group has been conducted. Seven public social service professionals (five social workers and 2 community animators) working in the cross-border area studied participated in it. With the support of the Atlas.ti software and following a deductive coding model, the data obtained were systematically coded and interpreted by grouping the information into categories.Main results:Initial research results suggest that 1) most of the support is exclusively aimed at the care of the sick person, even if it indirectly contributes to the improvement of the FQoL; 2) there are adequate support services for the improvement of the FQoL, but they are very insufficient; 3) formal support in the rural environment is limited by the characteristics of the environment.Conclusion:Initial results suggest that the lack of access and inadequacy of support services in rural areas has an impact on the FQoL.

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.

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