Quality of Life in Flemish Families with a Child with an Intellectual Disability: a Multilevel Study on Opinions of Family Members and the Impact of Family Member and Family Characteristics

2017 ◽  
Vol 13 (3) ◽  
pp. 779-802 ◽  
Author(s):  
Lien Vanderkerken ◽  
Mieke Heyvaert ◽  
Patrick Onghena ◽  
Bea Maes
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Family Member ◽  
Family Members ◽  
Family Characteristics ◽  
Multilevel Study ◽  
The Impact

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 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.

More Than Just a Mammogram: Breast Cancer Screening Perspectives of Relatives of Women With Intellectual Disability

2014 ◽  
Vol 52 (6) ◽  
pp. 444-455 ◽  
Author(s):  
Nechama W. Greenwood ◽  
Deborah Dreyfus ◽  
Joanne Wilkinson
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Health Care ◽  
Intellectual Disability ◽  
Cancer Screening ◽  
Breast Cancer Screening ◽  
Breast Cancer Mortality ◽  
Family Members ◽  
Well Being

Abstract Women with intellectual disability (ID) have similar rates of breast cancer as the general public, but higher breast cancer mortality and lower rates of regular screening mammography. Screening rates are lowest among women who live with their families. Though women with ID often make decisions in partnership with their relatives, we lack research related to family member perspectives on mammography. We conducted a qualitative study of family members of women with ID, with an interview guide focused on health care decision making and experiences, and breast cancer screening barriers, facilitators, and beliefs as related to their loved ones. Sixteen family members underwent semistructured interviews. Important themes included mammography as a reference point for other social and cultural concerns, such as their loved one's sexuality or what it means to be an adult woman; fear of having to make hard decisions were cancer to be diagnosed acting as a barrier to screening; a focus on quality of life; and desire for quality health care for their loved one, though quality care did not always equate to regular cancer screening. Adults with ID are valued members of their families, and their relatives are invested in their well-being. However, families fear the potentially complicated decisions associated with a cancer diagnosis and may choose to forgo screening due to misinformation and a focus on quality of life. Effective interventions to address disparities in mammography should focus on adults with ID and their families together, and incorporate the family context.

scholarly journals PAINTING PICTURES: TOWARDS CONNECTING THROUGH IMAGERY IN DIALOGUES WITH YOUNG PEOPLE WITH INTELLECTUAL DISABILITY

2018 ◽  
Vol 9 (4) ◽  
pp. 125-145 ◽  
Author(s):  
Hanna Peels ◽  
Sofie Sergeant
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Young People ◽  
Family Members ◽  
Professional Support ◽  
Dutch Society ◽  
Critical Dialogue

The authors discuss pivotal themes in the use of imagery (visual and verbal) as a method to engage in dialogue with young people with intellectual disability (ID). In their discussion they reflect on co-occurring changes in Dutch society, the nature of caregiving, and the increasing appeals for empowerment for and by people with ID. A critical dialogue is used to analyse experiences with imagery from their previous research, and the possibilities imagery harbours to improve dialogues on quality of life with young people with ID. Through analysis of the critical dialogue, five themes were identified: leitmotiv, ambiguity, choice, revelation, and distance. To conclude, the authors discuss why family members and professional support workers should consider using imagery as a productive methodology.

scholarly journals Mobile Midwesterners: The Impact of Migration on Aging, Health, and Community

2013 ◽  
Vol 34 (1) ◽  
pp. 6-17 ◽  
Author(s):  
Matthew Dalstrom
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Access To Health Care ◽  
Family Members ◽  
Seasonal Migration ◽  
Retirement Communities ◽  
Health Seeking ◽  
Health Seeking Behaviors ◽  
The Impact

As the population in the US ages, there is increasing need to study aging and its relationship to quality of life, health, and community. Quality of life is closely correlated with belonging to a community. Unfortunately, as seniors age there is a propensity for them to become increasingly isolated as their mobility decreases and their friends and family members die or move away. As a result, some seniors in the Midwest have begun to migrate to RV parks in the Lower Rio Grande Valley (“LRGV”) in south Texas that function as temporary retirement communities for the winter. While there, they reconnect with friends and family members and engage in a variety of social, civic, and exercise related activities. Further, they participate in a variety of health seeking behaviors such as health screenings, trading medications, and using the Mexican health care system. This article explores these practices and discusses how Winter Texans choose the LRGV, how new members become integrated into RV parks, and how life in the parks impacts health and access to health care services. It also highlights the impact that seasonal migration has on community formation, health seeking behaviors, and the diversity of retirement communities.

scholarly journals Impact of the COVID-19 Pandemic on Mental Health and Quality of Life among Local Residents in Liaoning Province, China: A Cross-Sectional Study

2020 ◽  
Vol 17 (7) ◽  
pp. 2381 ◽  
Author(s):  
Yingfei Zhang ◽  
Zheng Feei Ma
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Family Members ◽  
Lifestyle Changes ◽  
Liaoning Province ◽  
Event Scale ◽  
Validated Questionnaire ◽  
The Mean ◽  
The Impact

Our study aimed to investigate the immediate impact of the COVID-19 pandemic on mental health and quality of life among local Chinese residents aged ≥18 years in Liaoning Province, mainland China. An online survey was distributed through a social media platform between January and February 2020. Participants completed a modified validated questionnaire that assessed the Impact of Event Scale (IES), indicators of negative mental health impacts, social and family support, and mental health-related lifestyle changes. A total of 263 participants (106 males and 157 females) completed the study. The mean age of the participants was 37.7 ± 14.0 years, and 74.9% had a high level of education. The mean IES score in the participants was 13.6 ± 7.7, reflecting a mild stressful impact. Only 7.6% of participants had an IES score ≥26. The majority of participants (53.3%) did not feel helpless due to the pandemic. On the other hand, 52.1% of participants felt horrified and apprehensive due to the pandemic. Additionally, the majority of participants (57.8–77.9%) received increased support from friends and family members, increased shared feeling and caring with family members and others. In conclusion, the COVID-19 pandemic was associated with mild stressful impact in our sample, even though the COVID-19 pandemic is still ongoing. These findings would need to be verified in larger population studies.

scholarly journals Family perceptions of intellectual disability: Understanding and support in Dar es Salaam

2012 ◽  
Vol 1 (1) ◽  
Author(s):  
Heather M. Aldersey
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Family Support ◽  
Family Members ◽  
Dar Es Salaam ◽  
Family Quality Of Life ◽  
Adults With Intellectual Disabilities ◽  
Family Perceptions ◽  
The Individual

When attempting to understand the construct of intellectual disability in different contexts, speaking to family members in addition to the individual with the disability may provide new insight about understandings of and responses to intellectual disability in society and may help to identify the forms of support that are available or needed to ensure the quality of life of people with disabilities. This article outlines and discusses interviews that were conducted in Dar es Salaam, Tanzania, with family members of children and adults with intellectual disabilities. These interviews explore how families came to understand that their child had an intellectual disability; the availability of family support; and family hopes and dreams for the future, and were a part of a wider exploratory study that gathered insight from individuals with disabilities, families, and other providers of support to explore understandings and perceptions of disability in Dar es Salaam. Understanding family experiences will help researchers, policy makers, non-governmental organisations, and others to identify family strengths and family support needs which can ultimately improve family quality of life and the quality of life of the member with a disability.

scholarly journals Evaluating Quality of Life in Families With Williams Syndrome Patients

2020 ◽  
Author(s):  
ESTHER MORALEDA ◽  
Mario Arana ◽  
Patricia López
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Williams Syndrome ◽  
Personal Development ◽  
Social Inclusion ◽  
Interpersonal Relations ◽  
Well Being ◽  
Self Determination ◽  
The Impact

Abstract Background: Williams Syndrome is a developmental disorder characterized by a variable intellectual disability. People with Williams Syndrome need the intervention of several clinical and educational specialists throughout their life. However, little is known about the impact produced by this disability in their immediate environment, especially in families. The purpose was to know the level of quality of life described by families with Williams Syndrome.Methods: The sample was made up of 33 families belong to Spanish Williams Syndrome Association who were evaluated using the Kidslife Scale. Theirs children and adolescents were between 4 and 20 years old. Eight main quality of life dimensions were evaluated: emotional well-being, physical well-being, material well-being, personal development, interpersonal relations, social inclusion, self-determination and rightsResults: The obtained data indicated that the degree and presence of intellectual disability themselves did not homogeneously influence people’s quality of life, but many variables could alter their quality of life to a greater or lesser extent. There are no significant differences between quality of life areas but significant differences appeared for level of dependence in the self-determination subarea (p<.05). Conclusions: These results led us to analyse the social and emotional implications for families and their environment.

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