scholarly journals A Collaborative Approach: Care Staff and Families Working Together to Safeguard the Quality of Life of Residents Living With Advanced Dementia

2019 ◽  
Vol 11 ◽  
pp. 117957351984387
Author(s):  
Sian Ellen Hughes ◽  
Bob Woods ◽  
Katherine Algar-Skaife ◽  
Hannah Jelley ◽  
Catrin Hedd Jones
Keyword(s):  
Quality Of Life ◽  
Human Rights ◽  
Care Home ◽  
Family Members ◽  
Well Being ◽  
Direct Care ◽  
Care Staff ◽  
Advanced Dementia ◽  
Structured Interviews

Objectives: This study aimed to explore the quality of life and well-being of care home residents living with advanced dementia, how personalised care can be achieved where the person is completely dependent on others for care and how individuals’ choices and human rights were upheld. Methods: The study design used a qualitative approach, with data collected through in-depth, semi-structured interviews with 8 family members, all of whom visited daily, and 8 care staff. Results: Emerging themes highlighted the importance of family involvement, signs of well-being, communication and the valued role of direct care staff. Discussion: Participants were able to identify factors of residents’ well-being in residents living with advanced dementia. Family members who visited daily saw themselves working collaboratively with care staff to maintain the quality of life of their relatives and engage in proxy decision making. Regarding human rights, the emphasis was on avoiding abuse, rather than promoting well-being.

AwareCare: a pilot randomized controlled trial of an awareness-based staff training intervention to improve quality of life for residents with severe dementia in long-term care settings

2012 ◽  
Vol 25 (1) ◽  
pp. 128-139 ◽  
Author(s):  
Linda Clare ◽  
Rhiannon Whitaker ◽  
Robert T Woods ◽  
Catherine Quinn ◽  
Hannah Jelley ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Controlled Trial ◽  
Care Home ◽  
Intervention Group ◽  
Well Being ◽  
Care Staff ◽  
Control Group ◽  
Severe Dementia ◽  
Term Care

ABSTRACTBackground: The extent to which care home residents with severe dementia show awareness is influenced by the extent to which the environment provides opportunities for engagement and by the way in which care staff interact with them. We aimed to establish whether training care staff to observe and identify signs of awareness in residents with severe dementia resulted in improved quality of life for residents.Methods: In this pilot cluster randomized trial, care staff in four homes (n = 32) received training and supervision and carried out structured observations of residents using the AwareCare measure (n = 32) over an eight-week period, while staff in four control homes (n = 33) had no training with regard to their residents (n = 33) and no contact with the research team. The primary outcome was resident quality of life. Secondary outcomes were resident well-being, behavior and cognition, staff attitudes and well-being, and care practices in the home.Results: Following intervention, residents in the intervention group had significantly better quality of life as rated by family members than those in the control group, but care staff ratings of quality of life did not differ. There were no other significant between-group differences. Staff participating in the intervention identified benefits in terms of their understanding of residents’ needs.Conclusions: Staff were able to use the observational measure effectively and relatives of residents in the intervention homes perceived an improvement in their quality of life.

scholarly journals From the First Visit On: Information Technology and Communication

2013 ◽  
Vol 9 (3) ◽  
pp. 152-154 ◽  
Author(s):  
J. Russell Hoverman
Keyword(s):  
Quality Of Life ◽  
Information Technology ◽  
Family Members ◽  
Well Being ◽  
Technology And Communication

The oncology community has found that communication is key to the patient's quality of life, the well-being of family members, hospice enrollment, and costs. The challenge is to make these conversations happen.

scholarly journals Health-related quality of life among 13–14 year old adolescents with overweight - a mixed methods approach

2019 ◽  
Author(s):  
Turid Kristin Bigum Sundar ◽  
Kirsti Riiser ◽  
Milada Småstuen ◽  
Randi Opheim ◽  
Knut Løndal ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mixed Methods ◽  
Well Being ◽  
Reference Population ◽  
Health Related Quality ◽  
Structured Interviews ◽  
Post Intervention ◽  
Related Quality ◽  
Health Related

Abstract BackgroundOverweight and obesity are public concerns with risk of adverse health outcomes. Health-related quality of life (HRQoL) is lower in adolescents than children in general. An increase in body mass index (BMI) is associated with a decrease in HRQoL. The purpose of this study was to measure and explore the HRQoL among adolescents with overweight or obesity who had participated in an intervention study with the aim of increasing PA, reducing BMI and promoting HRQoL.Methods Mixed methods, with a convergent design, were used to investigate how different methodological approaches could expand our understanding of the adolescents’ HRQoL. Quantitative post-intervention data on HRQoL were collected among the 84 intervention participants, aged 13–14 years, using the KIDSCREEN 52 questionnaire. The data were compared with a Norwegian reference population of 244 individuals, and analysed using a non-parametric Mann-Whitney test. Qualitative semi-structured interviews were conducted with 21 adolescents from the intervention. A directed approach to content analysis was adopted, using the ten sub-scales from KIDSCREEN 52.ResultsHRQoL in the intervention sample was significantly reduced on the sub-scale of physical well-being compared to the reference population. The reference population scored significantly lower than the intervention sample on the sub-scale of parent relation and home life. No significant differences were found on the other sub-scales. The qualitative data supported the quantitative findings on the sub-scale of physical well-being, but showed that perceptions of fitness, energy level or health could vary. Regarding parent relations, the interviewees extended this to include relationships to other family members as equally important. Most of the interviewees expressed a negative view of their bodies, but not their clothing or accessories. This may explain why no statistically significant differences were found on these aspects in the results from the KIDSCREEN questionnaire. ConclusionThe use of the KIDSCREEN 52 instrument gave important indications about the adolescents’ HRQoL. Combining methods enabled a comprehensive approach to research on HRQoL, indicating better ways of providing help. More research using the benefits of mixed methods approaches is needed to further elucidate these findings.

Evaluation of Alzheimer's Australia Vic Memory Lane Cafés

2010 ◽  
Vol 23 (2) ◽  
pp. 246-255 ◽  
Author(s):  
Briony Dow ◽  
Betty Haralambous ◽  
Courtney Hempton ◽  
Susan Hunt ◽  
Diane Calleja
Keyword(s):  
Quality Of Life ◽  
Support Groups ◽  
Social Inclusion ◽  
Service Providers ◽  
Family Members ◽  
Memory Loss ◽  
Well Being ◽  
Human Research Ethics ◽  
People With Dementia

ABSTRACTBackground: This paper describes the evaluation of the Memory Lane Café service in Victoria, Australia. The Alzheimer's Australia Vic Memory Lane Café model aims to provide a social and educational service to people living with dementia and their carers, family members or friends. Dementia is a serious health issue in Australia, with prevalence estimated at 6.5% of people over 65 years of age. Living with dementia has significant social and psychological ramifications, often negatively affecting quality of life. Social support groups can improve quality of life for people living with dementia.Methods: The evaluation included focus groups and surveys of people with dementia and their carers, staff consultation, service provider interviews, and researcher observation. The Melbourne Health Mental Health Human Research Ethics Committee approved the project. Participants included people with dementia (aged 60 to 93 years, previously enrolled in the Alzheimer's Australia Vic's six-week Living With Memory Loss Program), their carers, friends and/or family members, staff working in the Cafés, and service providers with links to the Cafés.Results: This evaluation found that Memory Lane Cafés promote social inclusion, prevent isolation, and improve the social and emotional well-being of attendees. However, Cafés did not meet the needs of all potential attendees.Conclusions: The evaluation recommended that existing Café services be continued and possibilities for extending the Cafés be explored. Based on evaluation outcomes, the Department of Health Victoria is funding four additional pilot programs in café style support services.

scholarly journals Understanding quality of life and well-being for people living with advanced dementia

2019 ◽  
Vol 31 (2) ◽  
pp. 18-24
Author(s):  
Sian Hughes ◽  
Bob Woods ◽  
Katherine Algar-Skaife ◽  
Catrin Hedd Jones
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Advanced Dementia

scholarly journals Quality of life and psychosocial well-being among children living with HIV at a care home in Southern India

2014 ◽  
Vol 9 (4) ◽  
pp. 345-352 ◽  
Author(s):  
Tess Lang ◽  
Elsa Heylen ◽  
Sheeja Perumpil ◽  
Anita Shet ◽  
Mathew Perumpil ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Care Home ◽  
Well Being ◽  
Southern India ◽  
Living With Hiv

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 An evaluation of group reminiscence arts sessions for people with dementia living in care homes

Dementia ◽  
2018 ◽  
Vol 19 (3) ◽  
pp. 805-821 ◽  
Author(s):  
Frank Keating ◽  
Laura Cole ◽  
Robert Grant
Keyword(s):  
Quality Of Life ◽  
Social Inclusion ◽  
Care Home ◽  
Well Being ◽  
Care Homes ◽  
Primary Data ◽  
Evaluation Team ◽  
People With Dementia ◽  
Group Reminiscence

Dementia has been identified as one of the major challenges in the 21st Century. The detrimental effects of dementia can jeopardise personhood, thus person-centred interventions including reminiscence and arts practice have been recommended as tools to promote social inclusion and improve the quality of life. This study aimed to evaluate the effectiveness of group reminiscence arts sessions for people living with dementia in care homes (residential and nursing homes) using a comparative and time series design to collect data on quality of life. The intervention was conducted in six care homes in London over a period of 24 weeks and compared with six care homes not receiving the intervention (control). Dementia Care Mapping was used as the primary data collection instrument to measure positive behaviours and rate quality of life before, during and after group reminiscence arts sessions. The evaluation team observed the sessions at three-weekly intervals. Statistical modelling found that positive behaviours and quality of life of care home residents participating in group reminiscence arts sessions increased over the 24-week period. Well-being increased sharply during each session and plateaued at 50 minutes with a sustained positive effect after the sessions. On a longer timescale, well-being and quality of life increased slowly and steadily from one session to the next. The findings were statistically significant ( p < 0.001). The study concludes that group reminiscence arts sessions can have a positive and sustained impact on the quality of life of people with dementia. However, the evidence on the sustainability of the effect over time remains unknown. More research is needed to assess in much greater depth the association between quality of life and group reminiscence arts sessions.

QOL in primary care of elderly mentally ill and their caregivers’ well-being

2011 ◽  
Vol 26 (S2) ◽  
pp. 859-859
Author(s):  
N. Tataru ◽  
A. Dicker
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Primary Care ◽  
Mental Disorders ◽  
Mental Health Problems ◽  
Well Being ◽  
The Elderly ◽  
Care Staff ◽  
Care Of Elderly

It is difficult to talk about quality of life of elderly with mental disorders. Thus, there appeared serious ethical challenges for psychiatry: to cut mental health costs and to provide care to as many as possible through all duration of their diseases, from the onset to the end-of-life. The psychiatrists have to face these challenges and treat the elderly with or without mental disorders from primary care to residential one, assuring them the best quality of life as it is possible. The goal of medical policy is to optimize the patients’ and their caregivers’ well-being. Multiple loses in old age are important in decreasing of quality of life and increasing of mental health problems in the elderly. They have more social and medical problems, which include depression and suicide. Caring for a family member with dementia can be both challenging and stressful. Primary care-staff need to develop the skills to detect and manage signs of caregivers stress. Health care professionals can promote well-being of the caregivers not only the patients’ well-being, educate them how to access help and manage their stress effectively. Recognition of the importance of the role of caregivers and finding the effective ways of supporting them, respecting their personal perception of the quality of this offer, improve the quality of primary care of elderly patients with mental disorders and also improve the quality of life of their relative or caregivers.

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