“I Would Like to Have a Normal Brother but I’m Happy With the Brother That I Have”: A Pilot Study About Intellectual Disabilities and Family Quality of Life From the Perspective of Siblings

2021 ◽  
pp. 0192513X2110428
Author(s):  
Raquel A. Correia ◽  
Maria João Seabra-Santos
Keyword(s):  
Quality Of Life ◽  
Pilot Study ◽  
Intellectual Disabilities ◽  
Family Relationships ◽  
Leisure Activities ◽  
Well Being ◽  
Family Quality Of Life ◽  
Adult Sibling ◽  
The Disabled

The relationships between siblings are the most long-lasting in families. When one of the siblings is a person with intellectual disabilities (ID), this relationship assumes an even more important role since this brother/sister will most likely become the disabled individual’s main caregiver. This pilot study had two aims: to explore the experience as an adolescent or adult sibling of a person with ID and to understand the perceptions of these siblings about quality of life as a sibling and about family quality of life. In-depth interviews were conducted with six siblings. The results showed that the experience of a sibling is positive and the acceptance process is of extreme importance. The domains which, from the sibling perspective, contribute to family quality of life are as follows: Family relationships, Acceptance, Health, Influence of values, Financial well-being, Support from others, and Leisure activities. The implications of these findings for intervention are pointed out.

The Influence of Attending Festivals with Children on Family Quality of Life, Subjective Well-Being, and Event Experience

2021 ◽  
Author(s):  
Yi Liu ◽  
Jason Draper
Keyword(s):  
Quality Of Life ◽  
Family Relationships ◽  
Structural Equation ◽  
Well Being ◽  
Equation Modeling ◽  
Family Quality Of Life ◽  
Subjective Well Being ◽  
Family Activity ◽  
The Relationship

Participants attending a festival(s) with children is a family activity that influences family relationships. This study examines the relationship between attending status (e.g., with or without children), event experience, subjective well-being, and family quality of life (FQOL). A total of 585 festival participants’ data analyzed by structural equation modeling (SEM) revealed that participants attending with children have a higher level of subjective well-being and FQOL compared to those without children. Participants attending with children have a higher level of cognitive engagement and experience novelty in festivals compared to those without children. Event experience results in a significant positive relationship with subjective well-being. This study expands current event literature in terms of FQOL and provides a practical guideline to event organizers to better understand the significance of festivals.

Family Quality of Life

2016 ◽  
Vol 38 (4) ◽  
pp. 191-211 ◽  
Author(s):  
Anoo Bhopti ◽  
Ted Brown ◽  
Primrose Lentin
Keyword(s):  
Quality Of Life ◽  
Family Relationships ◽  
Well Being ◽  
Family Quality Of Life ◽  
Family Interactions ◽  
Factors Affecting ◽  
Family Outcomes ◽  
Five Factors ◽  
Childhood Intervention

A scoping review was conducted to identify factors influencing the quality of life of families of children with disability. The review also explored the scales used to measure family quality of life (FQOL) as an outcome in early childhood intervention services (ECIS). Multiple databases were searched from 2000 to 2013 to include studies pertinent to ECIS. Results were charted and summarized based on scoping methodology. Eighteen articles were chosen for the review based on the selection criteria. Results were summarized as five factors that affect FQOL, namely, (a) disability-related support, (b) family interactions/family relationships, (c) overall well-being, (d) support from services, and (e) severity and type of disability. The review also identified two FQOL scales that were used most frequently within ECIS: (a) the Beach Center Family Quality of Life Survey, and (b) Family Quality of Life Survey: Main Caregivers of People With Intellectual or Developmental Disabilities. It is recommended that those responsible for evaluation decisions within ECIS programs should consider using a FQOL scale to measure family outcomes. Furthermore, professionals working with families within ECIS should consider the factors affecting FQOL to further enhance their service provision.

scholarly journals Giving Voice to Persons With Intellectual Disabilities About Family Quality of Life

2017 ◽  
Vol 14 (1) ◽  
pp. 59-67 ◽  
Author(s):  
Raquel Alveirinho Correia ◽  
Maria João Seabra-Santos ◽  
Paula Campos Pinto ◽  
Ivan Brown
Keyword(s):  
Quality Of Life ◽  
Intellectual Disabilities ◽  
Family Quality Of Life

scholarly journals Gaming Technology to Support Leisure Activities Among Older Adults

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 559-559
Author(s):  
Walter Boot
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Digital Divide ◽  
Daily Living ◽  
Leisure Activities ◽  
Well Being ◽  
Age Related ◽  
Gaming Technology ◽  
Research And Education

Abstract There has been a great deal of research on technology to support older adults in their performance of Activities and Instrumental Activities of Daily Living. There has been substantially less research, however, on exploring technology solutions that support hobbies and leisure. This is unfortunate, as quality of life and well-being are determined by more than just one’s ability to manage everyday tasks. An overview will be presented of research the Center for Research and Education on Aging and Technology Enhancement (CREATE) has conducted over two decades with the goals of understanding and supporting older adults’ performance of technology-based leisure activities. Many of these studies have involved videogaming, where there exists a substantial age-related digital divide. CREATE has evaluated older adults’ attitudes and game experiences through survey and research studies and has even recorded longitudinal gameplay. How these findings can be applied to support technology-based leisure activities will be expanded upon. Part of a symposium sponsored by Technology and Aging Interest Group.

scholarly journals A mixed-methods pilot study of ‘LIFEView’ audiovisual technology: Virtual travel to support well-being and quality of life in palliative and end-of-life care patients

2020 ◽  
Vol 34 (7) ◽  
pp. 954-965
Author(s):  
Monisha Kabir ◽  
Jill L Rice ◽  
Shirley H Bush ◽  
Peter G Lawlor ◽  
Colleen Webber ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Mixed Methods ◽  
Pilot Study ◽  
Preliminary Data ◽  
Psychological Symptoms ◽  
Well Being ◽  
Assessment System ◽  
Spiritual Well Being

Background: There is evidence that psychosocial and spiritual interventions of short duration, such as reminiscence therapy, provide positive impacts on quality of life and emotional and existential well-being in adults receiving palliative care. Aim: To determine (1) the feasibility of integrating ‘LIFEView’, a video-based software with >1600 videos of world destinations, in palliative care settings, and (2) positive, neutral or harmful effects of using ‘LIFEView’ videos. Design: A mixed-methods pre–post intervention pilot study was conducted to collect feasibility and preliminary data on physical and psychological symptoms, physiological indicators, spiritual well-being and aspects of quality of life. Setting/participants: Adult patients on an inpatient palliative care unit or receiving care from a community palliative care consultation team who were capable of providing consent and completing the outcome measures were eligible participants. Results: Overall, 27/41 (66%) participants took part in the study. Feasibility criteria, including participant acceptability, low participant burden, tool completion rate and retention rate, were fulfilled, though challenges were experienced with recruitment. Modest improvements, though non-significant, were shown on preliminary data collected on physical and psychological symptoms using the Edmonton Symptom Assessment System–revised, spiritual well-being assessed by the 12-item Functional Assessment of Chronic Illness Therapy – Spiritual Well-Being scale and physiological measurements. Qualitative analysis revealed five themes: motivations for using ‘LIFEView’, perceptions of the technology, reminiscence, ‘LIFEView’ as an adaptable technology and ongoing or future use. Conclusion: A future adequately powered study to investigate the impacts of ‘LIFEView’ on patient well-being and quality of life appears to be feasible.

Sign in / Sign up

Export Citation Format

Share Document