Quality Of Life Framework Research Articles

Psychosocial experiences of cancer survivors and their caregivers in sub-Saharan Africa: A synthesis of qualitative studies.

To synthesize and examine current literature on survivorship experiences and psychosocial oncologic care programs of individuals affected by cancer in sub-Saharan Africa (SSA). This was a systematic review guided by the PRISMA 2020 guidelines. We searched 6 databases for articles published from inception to 21 October 2021. Articles were appraised using the Johanna Briggs Institute's Checklist for Qualitative Research. For data synthesis, we used the World Health Organization (WHO) quality of life framework [WHOQOL] to organize experiences into 6 domains/themes. Twenty-five qualitative studies were included in the synthesis. Studies focused on psychosocial care of adults (>18years) affected by cancer in SSA. The common WHOQOL domains were social relations, spirituality/religion/personal beliefs, and psychological. Findings echo need for individuals with cancer and their caregivers. Healthcare professionals are an essential resource for information and support services that can be tailored to individuals need. This synthesis highlighted caregiver stress and stressors from the community that could impact care of individuals with cancer. A holistic approach is needed that incorporates professional and social aspects of care.

Development of an Item Bank for a Health-Related Quality of Life Measure in Spondyloarthritis.

Health-related quality of life (HRQOL) is an important aspect in the management of chronic diseases such as spondyloarthritis (SpA). A promising approach to reduce respondent burden when measuring HRQOL is the use of shorter patient-reported outcome measures (PROMs) delivered using computerized adaptive tests (CATs). However, the lack of an item bank that covers the entire continuum of the HRQOL domain impedes the development of CATs to measure HRQOL among patients with SpA. We aimed to develop an item bank for an HRQOL measure among patients with SpA based on the items from existing validated PROMs. This study is guided by the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) and Patient Reported Outcomes Measurement Information System (PROMIS) standards. Relevant articles were retrieved from PubMed, Embase, and PsycINFO (Ovid) databases. Items from existing PROMs were binned and winnowed according to the facets of HRQOL in the World Health Organization (WHO) quality of life framework. We identified 147 relevant articles, from which written permission was obtained for including 31 PROMs into the item bank. PROMs contained 1039 items, which underwent binning and winnowing. This resulted in 968 items covering 23 domains of HRQOL in the WHO framework, with the number of items within each domain ranging from 1 to 453. We created an item bank to measure HRQOL among patients with SpA using items from validated PROMs. This set can provide the foundation for the development of CATs to measure HRQOL among patients with SpA.

Medical Comorbidities in MECP2 Duplication Syndrome: Results from the International MECP2 Duplication Database.

Since the discovery of MECP2 duplication syndrome (MDS) in 1999, efforts to characterise this disorder have been limited by a lack of large datasets, with small case series often favouring the reporting of certain conditions over others. This study is the largest to date, featuring 134 males and 20 females, ascertained from the international MECP2 Duplication Database (MDBase). We report a higher frequency of pneumonia, bronchitis, bronchiolitis, gastroesophageal reflux and slow gut motility in males compared to females. We further examine the prevalence of other medical comorbidities such as epilepsy, gastrointestinal problems, feeding difficulties, scoliosis, bone fractures, sleep apnoea, autonomic disturbance and decreased pain sensitivity. A novel feature of urinary retention is reported and requires further investigation. Further research is required to understand the developmental trajectory of this disorder and to examine the context of these medical comorbidities in a quality of life framework.

Health of Aging Families: Comparing Compound and Noncompound Caregivers

Providing care to a family member with disabilities takes a toll on the caregiver and the whole family's health. Among aging caregivers, compound caregiving (i.e., caring for additional family members) has become an increasingly common scenario. However, few research studies have focused on compound caregivers. Extant literature describes individual-level outcomes, with sparse knowledge on family-level outcomes. The present study examines the differences in the individual and family health of aging compound and noncompound caregivers, using the family quality of life framework. Web-based cross-sectional data collected from 112 aging caregivers (i.e., over 50 years) was analyzed using chi-square and independent sample t-tests to examine differences between caregivers. Compound caregivers had worse perceptions of personal health (t = -2.96, p = .004, d = -.61) than noncompound caregivers. In terms of family health, although all caregivers shared similar perceptions on the importance, opportunities, initiative, and stability, compound caregivers had lower attainment (t = -2.64, p = .009, d = -.44) and satisfaction (t = -3.90, p < .001, d = -.73) than noncompound caregivers. Findings have practice implications for identifying caregivers' multiple responsibilities. It is necessary to develop individual and family level programs focused on health promotion and caregiving training.

Measuring What Counts to Advance Indigenous Self-Determination: A Case Study of the Nisg\u0331a\u2019a Lisims Government\u2019s Quality of Life Framework and Survey

Modern Treaties are presented as a means for improving the lives of First Nations, Inuit, and Métis peoples in Canada by providing specific rights, and negotiated benefits. However, the positive impacts of Modern Treaties on Indigenous well-being are contested (Borrows and Coyle 2017; Coulthard 2014; Guimond et al. 2013; Miller 2009; Poelzer and Coates 2015). Developing a more transparent, consistent, collaborative and contextual way of measuring well-being relevant to the cultural realities of Modern Treaty beneficiaries is an important step for generating comparative methods that could systematically demonstrate whether, and under what conditions, such agreements can effectively reduce socio-economic disparities and improve the quality of life of Indigenous communities. The authors first examine previous attempts at measuring Indigenous well-being, then reflect on well-being in relation to the Modern Treaty context. Subsequently, the authors provide an example from one Self-Governing Indigenous Government, the Nisga’a Lisims Government, to collect well-being data through the Nisga’a Nation Household Survey using a mixed quantitative-qualitative method developed through a culturally grounded and participatory approach.

Measurable Indicators of CRPD for People with Intellectual and Developmental Disabilities within the Quality of Life Framework.

This article proposes the quality of life (QOL) construct as a framework from which to develop useful indicators to operationalize, measure, and implement the Articles of the Convention on the Rights of Persons with Disabilities (CRPD). A systematic review of the scientific literature on people with intellectual and developmental disabilities (IDD) was carried out, with the aim of identifying personal outcomes that can be translated into specific and measurable items for each of the CRPD Articles aligned to the eight QOL domains. Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, the systematic review was conducted across the Web of Science Core Collection, Current Contents Connect (CCC), MEDLINE, KCI-Korean Journal Database, Russian Science Citation Index and SciELO Citation Index, for articles published between 2008 and 2020. A total of 65 articles focusing on people with IDD were selected. The results were grouped into four broad categories: conceptual frameworks used to monitor the CRPD; instruments used to assess the rights set out in the CRPD; recommendations on the use of inclusive research; and indicators or personal outcomes associated with specific rights contained in the CRPD.

Sleep disruption and quality of life in persons with dementia: A state-of-the-art review

Sleep disruption in persons with dementia is pervasive and contributes to negative health outcomes and decreased quality of life. Using Lawton's framework for quality of life in persons with dementia, the aim of this state-of-the-art review was to synthesize current knowledge on the association between sleep disruption and quality of life in persons with dementia in four domains: physical, social/behavioral, emotional well-being, and cognitive. Based on the final sample of six studies, sleep disruption was negatively associated with all four quality of life domains in persons with dementia. Given the variations in research design, measurement and sample size, conclusions could not be generated on the magnitude of the effects by domain. We do, however, provide recommendations for future research and clinical practice.

Whose quality of life? A comparison of measures of self-determination and emotional wellbeing in research with older adults with and without intellectual disability

ABSTRACTBackground Measures of quality of life (QOL) must be appropriate for specific groups but comparable across groups. In this paper, we compared how QOL is measured in research with older adults with and without an intellectual disability (ID).Methods Measures used in 2 population studies of older adults with and without ID (Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing [IDS-TILDA], and The Irish Longitudinal Study on Ageing [TILDA]) were examined. Framed by Schalock’s Quality of Life Framework, conceptual content of measures of emotional wellbeing and self-determination were compared. The acceptability and concurrent validity of IDS-TILDA measures were evaluated.Results The same measures of emotional wellbeing were identified in both surveys. However, measures of self-determination captured different aspects of the construct. Concurrent validity between self-determination and emotional wellbeing measures in IDS-TILDA was weak.Conclusions Research with adults with and without ID is limited by the nature of current inclusive QOL measures: Instruments are required that have adequate conceptual coverage and are comparable across groups but appropriate and feasible to use.

SOCIAL QUALITY AND QUALITY OF WORK LIFE OUTLINE THE EMPLOYEES’ QUALITY OF LIFE IN INDIAN PUBLIC SECTOR: AN INVESTIGATION

Many researchers have tried to identify the factors that determine quality of life and impact on these factors on social quality. The current research outlines the existing theory and provides an argument which suggests that the trust, loyalty and challenging works also can be part of the construct of social quality. Authors propose a model, supported by data, which suggests ways in which current social theories of trust, loyalty and challenging work may be incorporated within the quality of life framework. Design/Methodology/Approach - The study has two fold objectives. Firstly, to analyze the factors influencing employees social quality and quality of work life in Indian public sector and secondly, to understand the impact of identified variables on quality of life. The study is based on the primary data, collected from the employees of public sector of India. Data analysis was done using SPSS software. The statistical analysis method employed was descriptive analysis, factor analysis and multiple regressions.

Abstract C24: An integrative review of psychosocial concerns among young African American breast cancer survivors

Abstract Background: African American women are more likely to be diagnosed with breast cancer at an early age, more likely to experience morbidity after treatment, and disparities in survivorship. While psychosocial well-being is well known among breast cancer survivors, data are few regarding minorities such as African Americans, particularly those who are young. Objective: This integrative review examines psychosocial concerns in survivorship among young African American breast cancer survivors (YAABCS) using a holistic quality of life framework. Methods: Pubmed, CINHAL, and Scopus were searched for articles exploring psychological or social well-being in YAABCS. Results: The search yielded 264 articles. Thirty-six articles were retrieved and reviewed for relevance. Of these, 14 articles were selected based on inclusion/exclusion criteria. Themes of YAABCS psychosocial concerns were sexuality, mood, social support, and spirituality. Conclusions: The review demonstrated need for further research in YAABCS quality of life to adapt a more fitting quality of life model and to develop culturally-appropriate survivorship interventions. Implications for Practice: Clinicians, researchers, and YAABCS must partner to increase knowledge of the multidimensional survivorship of YAABCS. With knowledge, we may be able to decrease health disparities among YAABCS. The project was funded by an American Cancer Society Doctoral Degree in Nursing Scholarship, Jonas Nurse Leadership Scholarship, and Gladys F. Colvin Doctoral fellowship. Additional support received from a Komen Graduate Training in Disparities Research Award. Citation Format: Timiya S. Nolan, Jennifer Frank, Silvia Gisiger-Camata, Karen Meneses. An integrative review of psychosocial concerns among young African American breast cancer survivors. [abstract]. In: Proceedings of the Eighth AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 13-16, 2015; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2016;25(3 Suppl):Abstract nr C24.

Identifying good group homes: qualitative indicators using a quality of life framework.

Abstract Despite change toward more individualized support, group homes are likely to remain for people with severe intellectual disability. As such, the search continues for ways to determine and maintain the quality of these settings. This article draws on in-depth qualitative analysis of participant observations conducted over 9-12 months in seven group homes for 21 people with a severe and profound level of intellectual disability. It explores the conceptualization of good outcomes and support for this group in terms of their quality of life and staff practices. The qualitative indicators of good outcomes for this group using quality of life domains can be used by auditors, community visitors, funders, advocates, or family members to guide observation and judgements about group homes.

Abstract P6-08-14: Meeting needs and expectations of breast cancer survivors: Learning from patients through a survey method

Abstract Introduction: Oncology patients have many needs throughout the care continuum. Identification of the most salient needs is critical in program planning in an environment where resources are limited. Choices for programming should be based on information regarding survivors’ perceived needs and their usage of services provided by the cancer center and in the community. We developed a survey to assess needs of patients seen at our Cancer Center. The purpose of the project was to establish the feasibility of the method in the population, identify needs, use these as a basis to develop programs to meet the needs, and establish a baseline for future needs assessments. Methods: Previous U.S. cancer patient needs surveys were used as a background to create survey questions for cancer survivors using a quality of life framework. The scope of the survey was expanded based on feedback from Cancer Center leaders and Patent and Family Advisory Committee members. IRB approval was obtained and surveys were mailed to patients seen within 2 years at our sites. After eliciting demographic data, questions sought information about the performance of the cancer team and patient preferences for learning styles and what resources were used. Patients were asked by whom they preferred follow-up care to be given. Specific questions on the physical, emotional, social and spiritual effects of cancer were sought. Breast cancer respondents were compared to respondents with other types of cancer. Results: 1005 of 2750 (37%) mailed surveys were returned; 518 (51.5%) were from breast cancer survivors. Of the breast cancer survivors, mean age was 64 (range 30-94); 82% were Caucasian, 15% African-American; 62% were married; 50% were retired; 24% remained on treatment, 14% &amp;lt;2 years, 29% 2-5 years, 33% &amp;gt;5 years after treatment. Slightly more than half used non-hospital (57%) or hospital (54%) resources. Most commonly used non-hospital resource was internet (34%); most commonly used hospital resource was information from the health care team (36%). One year after treatment 90% preferred follow-up care from primary oncology team (vs. primary care physician or other). While there was concordance that “attention to my physical needs” was excellent for 76% and this was “important” for 94%, only 46% rated “attention to my emotional needs” as excellent with this was “important” for 84%. Fear of cancer recurrence was the greatest concern for patients and had not significantly resolved for the respondents &amp;gt;5 years after treatment. Breast cancer patients differed significantly from patients with other types of cancer having less fatigue (p&amp;lt;0.001), more issues with sexual intimacy (p = 0.001), more interest in obtaining genetic counseling (p = 0.001) and more fear of developing a new cancer (p = 0.01). Conclusions: This method of assessment was feasible (with a project cost of $7000), was completed in two years and can be used as a baseline. As a result of this survey our Cancer Center created an educational print resource describing our supportive oncology programs, implemented an end of treatment distress screening tool piloted with breast cancer patients, and provided staff education regarding patient needs and intervention tools. Citation Information: Cancer Res 2013;73(24 Suppl): Abstract nr P6-08-14.

Using strategic philanthropy to improve heritage tourist sites on the Gallipoli Peninsula, Turkey: community perceptions of changing quality of life and of the sponsoring organization

This paper examines the “Respect for History” project on Turkey's Gallipoli Peninsula sponsored by a Turkish oil company, OPET. The project sought to enhance and protect the cultural and historical experiences of tourists visiting Gallipoli, and to bring direct and indirect benefits to local communities through enhancing tourism-related business opportunities and improving community infrastructure. This research investigates the project's impact on residents’ perceived social and economic wellbeing, using a quality of life framework, and also ascertains residents’ views of the sponsoring firm. The context illustrates key differences between pure philanthropy and strategic philanthropy; the latter defined as doing good by purposefully achieving corporate and civic benefits. The role of strategic philanthropy as a sustainable tourism development tool, and its impact on tourism governance, are considered. Data were collected from 674 residents on the Turkish Gallipoli Peninsula in areas impacted by OPET's investment program. The results, using structural equation modelling (SEM), identify that respondents generally believe that both their economic and social quality of life have improved. This, in turn, has positively influenced respondents’ views of the sponsoring organization. The concept of strategic philanthropy appears valuable as a private sector, non-tourism, sustainable tourism development tool in some circumstances.

Neurodiversity, Quality of Life, and Autistic Adults: Shifting Research and Professional Focuses onto Real-Life Challenges

This article examines challenges to the quality of life experienced by autistic adults. The author, who is an autistic researcher, first shares how a neurodiversity perspective offers an important alternative to the deficit model of autism. Whereas the deficit model portrays autistic people as ill, broken, and in need of fixing, the neurodiversity perspective portrays it as a form of human diversity with associated strengths and difficulties. The article’s discussion then shifts to presenting Schalock’s (2000) quality of life framework as a neurodiversity-compatible lens through which domains of quality of life can be viewed. The article analyzes in detail these core domains in relation to the lives of autistic adults. The author suggests that a collaborative approach between professionals/researchers and autistic adults is needed to develop meaningful solutions to these challenges, and he presents possibilities for collaboration. KeywordsAutism, Neurodiversity, Quality of life, Autistic Adults

Toward Youth Self-Report of Health and Quality of Life in Population Monitoring

This paper addresses population monitoring of youth health and quality of life, including the concepts used, methodological and practical criteria for indicators, and existing surveys and measures. Current population surveys of youth generally focus on poor health, such as disability or health-risk behaviors. Although these are important end points, indicators of illness or risk do not reflect the health or life perspective of the majority of youth who do not experience health problems. The measures used to monitor youth health should be appropriate and sensitive to future needs and capture the perspectives of youths. Two potential concepts for this "scorecard" are self-perceived health and quality of life, which have been shown to be useful in adults. For youth, the quality of life framework seems particularly relevant as it incorporates both positive and negative aspects of health and well-being and also captures salient aspects of health other than physical health, such as sense of self, social relationships, environment and culture, and life satisfaction.

A three- to six-year follow-up of former long-stay residents of mental handicap hospitals in Northern Ireland.

Little is known about the first cohorts of long-stay hospital residents with learning disabilities who moved to the community. This study describes the pattern of residential reprovision for all former long-stay residents discharged from the three mental handicap hospitals in Northern Ireland between 1987 and 1990 (N = 283) as well as describing aspects of quality of life for a smaller sample of people. The study employs a retrospective survey design and the method and findings are discussed within a quality of life framework. Information about destinational outcomes between 1987 and 1993 was collected for each former resident. Several instruments were also used to assess material, emotional and social well-being and development and activity for a 40 per cent sample of people (114/283) discharged from hospital during 1987-1990 and followed up in 1993. Approximately 70 per cent of residents were discharged to, and subsequently remained in, highly supported settings such as residential and nursing homes. Only 3 per cent were discharged to 'independent living' with their own families or foster families. Few of the sample had 'major' problems with daily living skills and serious behavioural problems were uncommon. Former patients were also more satisfied with their new homes and reported feeling happier, healthier and more independent since discharge. However, social networks were poor and there was no evidence to suggest that people were undertaking new or 'ordinary' daytime activities. Although the material needs of former hospital residents (many of whom may have been 'cream skimmed' from the long-stay population) appeared to be met and they were content with their new homes in the community, they had a limited choice of mainly private sector accommodation and few opportunities for personal and social development.

Nursing Care of Elderly Persons Throughout the Cancer Experience: A Quality of Life Framework

The geriatric oncology nurse integrating a sound theoretical knowledge base with the dimensions of time, an ethical framework, and an affirmative approach to aging reinforces older adults' constellation of personal strengths and coping resources and sustains the self-determination and integrity of patients throughout the cancer experience. Assisting older adults to accomplish life tasks while balancing illness demands with coping resources requires patience, flexibility, and sensitivity. Strategies are planned and implemented to assist older adults in achieving with equanimity biologic and psychosocial life tasks and maintaining a comfortable level of functioning consistent with the limitations imposed by the illness and aging processes. It is challenging for nurses to provide the best possible control of troublesome symptoms in an evolving illness with frequently changing needs and concerns. Adequate symptom management requires astute observation skills and coordination of care among other disciplines to achieve patient comfort and dignity. The patient's frame of reference regarding well-being and life quality is the major determinant in planning care. In this era of technological and scientific innovations, it is a nursing responsibility to explore quality of life as a realistic outcome variable for older adults throughout the cancer experience, including the time when death is imminent.

A quality of life framework for family life leisure activities

A quality of life framework for family life leisure activities