Exploring the psychometric properties of self-report instruments used to measure health-related quality of life and subjective wellbeing of adolescents with intellectual disabilities: A Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) systematic review

Background

Studies that have systematically reviewed the psychometric properties of health-related quality of life (HRQoL) and subjective wellbeing instruments for adolescents with intellectual disabilities narrowly focus on disease or health-specific conditions. This review aimed to critically appraise the psychometric properties of self-report instruments used to measure HRQoL and subjective wellbeing of adolescents with intellectual disabilities.

Method

A systematic search was undertaken in four databases. The quality of the included studies and their psychometric properties was assessed according to the COnsensus-based Standards for the selection of health Measurement Instruments Risk of Bias checklist.

Results

Seven studies reported psychometric properties of five different instruments. Only one instrument identified as having potential to be recommended for use but requires further validation research to assess its quality for this population.

Conclusions

There is insufficient evidence to support the recommendation of a self-report instrument to assess HRQoL and subjective wellbeing of adolescents with intellectual disabilities.     

Living as a family in the midst of chronic illness

Aims and objectives

The aim of the study was to illuminate the meaning of lived experience of living as a family in the midst of chronic illness.

Background

Chronic illness implies a change for both the individual and the family. In this changed situation, all family members seem to benefit from sharing experiences and receiving support. Current research highlights the individual patient's or family member's perspectives on chronic illness, but family systems nursing (FSN) studies are warranted.

Design

A qualitative design with a FSN approach was chosen.

Method

Repeated qualitative narrative interviews with seven families living with chronic illness were performed. A phenomenological hermeneutic analysis, inspired by Ricoeur, was used to interpret the data.

Results

The phenomenon can be described as an ongoing movement towards well‐being. The results included two themes and five sub‐themes. The first theme was ‘Co‐creating a context for living with illness’ with the subthemes; ‘learning to live with the expressions of illness’ and ‘communicating the illness within and outside the family’. The second theme was ‘Co‐creating alternative ways for everyday life’ with the subthemes; ‘adapting to a new life rhythm’, ‘altering relationships’ and ‘changing roles and tasks in the family’.

Conclusions

Living as a family in the midst of chronic illness can be described as an ongoing process where the family members co‐create a context for living with illness. They also co‐create a context for alternative ways of everyday life.

Relevance to clinical practice

Knowledge about lived experience of living as a family in the midst of chronic illness can help nurses to adopt a FSN care perspective. This can increase the chances of taking advantage of the ways family members manage situations together, as well as highlight resources within the family.     

The concept of health scale: developed for Chinese people with chronic illness

BACKGROUND: As the concept of health in Chinese people with chronic illness had not been previously explored, a scale to measure this concept in this client group was developed. OBJECTIVE: To develop and test the psychometric integrity of the Concept of Health Scale (CHS) for use with Chinese people. METHODS: Previous nursing experience and a literature review were used to inform the initial development of the CHS. It was revised following scrutiny by a panel of experts. Two studies tested the psychometric integrity of the scale. In Study One the data gathered from 80 Chinese people with a chronic illness were subjected to item analysis and exploratory factor analysis. In Study Two, with a convenience sample of 372 chronically ill Chinese people, confirmatory factor analysis was conducted. RESULTS: Instrument analysis in Study One resulted in a 34-item scale with a Cronbach alpha of 0.94. The results of an exploratory factor analysis showed that physical, psychosocial, and spiritual factors were represented by the CHS. The hypothesized model of the CHS was tested in Study Two using confirmatory factor analyses. The results of this study indicated that the concept of health was comprised of six first-order and three second-order factors. CONCLUSION: The results of this study demonstrated that Chinese people with chronic illness held a broad frame of reference in gauging the concept of health. The development of the CHS brings us one step closer to understanding how Chinese people with chronic illness regard the concept of health.     

Chronic illness and the family life-cycle

Chronic illness is currently the outstanding health issue in the United States It creates increased family stress, requires constant adaptation by the family members and poses a challenge to nurses to better understand and meet the needs of the family as well as the individual This paper presents a psychosocial typology of chronic illness and discusses the importance of time phasing of the chronic illness A conceptual framework for analysing the interaction of chronic illness with family and individual life-cycles is outlined Knowledge of life-cycle stressors is essential for nurses to better delineate the relationship between the vertical and horizontal life stressors which affect the family system     

The family, crisis and chronic illness: an evolutionary model

While chronic illness has a profound impact upon the individual, an immense burden is imposed upon the family. When the competing demands of an illness and the family escalate exponentially, there may be a crisis. Traditionally, crisis theory has been applied to acute care contexts such as emergency, intensive care and mental health nursing. Yet, clinical experience with families and chronic illness supports the notion of periodic crises from the prediagnostic phase to the long-haul of the illness. Moreover, the authors hypothesize that the family's perception of the event determines whether the crisis is perceived as a threat or a challenge. This paper thus addresses the perception of crisis within the framework of chronic illness from a biological and family systems nursing perspective. First, the theory of Humberto Maturana, a Chilean biologist, is explored and applied to clinical observations regarding family, crisis and chronic illness. Second, an evolutionary model for conceptualizing crisis and chronic illness is presented. Third, the role of beliefs in the family perceptions of crisis and chronic illness is discussed.     

Experience of stigma among family members of people with severe mental illness: A qualitative systematic review

Family members of people with severe mental illness are subjected to stigmatization, and a better understanding of their experience of stigma is important for developing anti‐stigma interventions to reduce the related adverse consequences. This review aimed to systematically identify, evaluate, and synthesize existing findings from qualitative studies regarding the experience of stigma among family members of people with severe mental illness. A systematic literature search for primary studies was conducted in PubMed, EMBASE, Ovid MEDLINE, Web of Science, PsycINFO, CINAHL, ProQuest Dissertations and Theses (PQDT), SinoMed (China), Chinese Citation Database (CNKI), and Wanfang Data (China) until March 2019. Findings from the included qualitative studies were extracted and aggregated using meta‐synthesis, guided by the Joanna Briggs Methodology for Qualitative Systematic Reviews. The results revealed that family members experienced stigma and suffered from various negative consequences related to it. Five major categories were identified in 20 studies: ‘negative public images of mental illness’, ‘structural discrimination against mental illness’, ‘stigma encountered in everyday life’, ‘psychological distress associated with stigmatization’, and ‘coping with stigma’. The study contributes to our understanding of the stigma experienced by family members of people with severe mental illness. It is suggested that culturally appropriate multi‐level interventions targeting the general public, health professionals, communities, and family members need to be developed to reduce the harmful influence of associated family stigma.     

Assessing family resources: validation of the Swedish version of the Family Hardiness Index

All families face normative transitions. Some are perceived as stressful and calls for family resources to maintain or restore family well‐being. In times of illness, families also need to develop strengths and capabilities to enhance family well‐being. The way these are developed is related to family hardiness. Family hardiness is thus seen as a family resource, and the Family Hardiness Index (FHI) was developed to measure family stress resistance and adaptation resources. The index was not available in Swedish and no extensive international psychometric evaluation was found. Therefore, the aim was to translate and validate the Swedish version of the FHI. The study was approved by a Regional Ethical Review Board. Data from 174 Swedish participants, family members to persons with cognitive dysfunctions (n = 95) and nursing students (n = 79) were included. Family members were enrolled in outpatient clinics in primary care and rehabilitation, and nursing students at a nursing school. Psychometric properties were evaluated through calculations of missing data, distributions of item and scale scores, item correlations, Cronbach's alpha, confirmatory factor analyses and correlations with theoretically related constructs. Sample scores had acceptable data quality, internal consistency for the FHI total scale was satisfactory (α = 0.86), and construct validity was supported. Our findings cast some doubt on the intended interpretation since confirmatory factor analyses showed that a modified four‐subscale version, excluding one subscale, showed best fit. The Control subscale lacked important psychometric properties in terms of homogeneity, internal consistency and construct validity. The sample size was probably sufficiently large for the factor analyses, but the subgroup analyses should be treated with caution. The conclusion is that the Swedish version of the FHI is a promising scale for assessing family hardiness, but more solid evidence for the factor structure in various Swedish and international samples is needed.     

Analysis of instruments measuring nurses' attitudes towards research utilization: a systematic review

AIM: This paper is a report of a systematic review describing instruments used to measure nurses' attitudes towards research utilization. BACKGROUND: Researchers need to have the tools to measure nurses' attitudes. However, limited literature critically analyses instruments and the concepts that comprise nurses' attitudes towards research utilization. DATA SOURCES: A search of the literature from 1982 to 2007 was performed using the Cumulative Index to Nursing and Allied Health Literature, Health and Psychosocial Instruments, PubMed and MEDLINE data bases. The search terms were nursing research, research utilization, instruments, and nurses' attitudes. A total of 186 sources were identified, of which 25 were reviewed. METHODS: Fourteen instruments met the criteria for in-depth critical analysis of psychometric properties and concepts, and were included in the final review. Each instrument item was judged to be relevant to direct, indirect, persuasive and overall research utilization as defined by Estabrooks. Instruments were arranged from the strongest to the weakest reliability of the subscales to determine the instrument with the strongest psychometric properties. RESULTS: Indirect and overall research utilization was measured by all of the instruments. Ten instruments measured direct research utilization and nine instruments measured persuasive research utilization. The Research Utilization in Nursing Survey by Estabrooks, as adapted by Kenny, was an instrument with strong psychometric properties measuring all four concepts of nurses' attitudes towards using and participating in research and was clinically feasible. CONCLUSION: Many published instruments are available for use by nurse researchers to measure nurses' attitude towards research utilization, but only one has been subjected to rigorous testing: the Research Utilization in Nursing Survey by Estabrooks.     

Psychometric properties of a Chinese version of the critical care family needs inventory

The Critical Care Family Needs Inventory (CCFNI) was developed to measure family needs of patients with critical illness. However, testing of the CCFNI has not been undertaken for a Chinese-speaking population. The purpose of this study was to assess the psychometric properties of a Chinese version of the CCFNI in a sample of Chinese family members of critically ill patients. Translation into Chinese and reverse translation were completed before administering the questionnaire. The findings show that the Chinese version addressed adequately the original concepts and dimensions, and demonstrated a high level of equivalence with the original version. High internal consistencies (alpha = .80-.92) of the scale and its subscales were found. Principal components factor analysis supported the existence of a five-factor structure. The Chinese version also demonstrated high sensitivity to family needs in terms of severity of illness and satisfactory correlations with theoretically related constructs. These findings support the potential of the Chinese version to be used as a diagnostic tool in assessment of family needs of Chinese patients.     

Assessing physical function and activity for survivors of a critical illness: A review of instruments

Background

Functional outcomes and health-related quality of life are important measures for survivors of a critical illness. Studies have demonstrated debilitating physical effects for a significant proportion of surviving patients, particularly those with intensive care unit-acquired weakness. Contemporary practice changes include a focus on the continuum of critical illness, with less sedation and more physical activity including mobility while in ICU, and post-ICU and post-hospitalisation activities to support optimal recovery. How to best assess the physical function of patients at different phases of their recovery and rehabilitation is therefore important.

Purpose

This narrative review paper examined observational and functional assessment instruments used for assessing patients across the in-ICU, post-ICU and post-hospital continuum of critical illness.

Methods

Relevant papers were identified from a search of bibliographic databases and a review of the reference list of selected articles. The clinimetric properties of physical function and HRQOL measures and their relevance and utility in ICU were reported in narrative format.

Findings

The review highlighted many different instruments used to measure function in survivors of ICU including muscle strength testing, functional tests and walk tests, and patient centred outcomes such as health related quality of life. In general, the sensitivity and validity of these instruments for use with survivors of a critical illness has not yet been established.

Conclusion

Based on findings from the review, screening of patients using reliable and valid instruments for ICU patients is recommended to inform both practice and future studies of interventions aimed at improving recovery and rehabilitation.     

Conserving the vitality of suffering: addressing family constraints to illness conversations

When persons are confronted with life-threatening or chronic illness, there is always a possibility that family members other than the person experiencing the illness also suffer as they attempt to manage their own distress. This paper describes exemplars from a hermeneutic study that explored therapeutic conversations between nurses and families who were living with a member experiencing ischaemic heart disease. These conversations uncovered the complexity of both individual and family suffering following acute cardiac illness events, and called attention to nursing practices that addressed some of the ways that family members were constrained from having conversations about the illness. When spaces were created for these conversations to occur, possibilities for making sense of illness and suffering were revealed as vital. These understandings support the efforts of family members to sustain and conserve family relationships in the face of illness and suffering, and inform both the professional and personal lives of nurses.     

Pain assessment tools for unconscious or sedated intensive care patients: a systematic review

Title.  Pain assessment tools for unconscious or sedated intensive care patients: a systematic review.
Aim.  This paper is a report of a systematic review describing instruments developed for pain assessment in unconscious or sedated intensive care patients.
Background.  Intensive care patients who are unconscious or sedated are unable to communicate and therefore recognition and assessment of the pain is difficult. To assess these patients' pain, it is important to use a valid and reliable pain assessment tool.
Data sources.  A systematic bibliographical review was conducted, based on seven databases, covering the period from January 1987 to February 2007. A total of 1,586 abstracts was identified and reviewed, 58 papers were selected for full-text review and nine papers were included in the review.
Methods.  Two researchers independently reviewed the abstracts and three reviewers extracted the papers. The included papers were evaluated using a quality assessment instrument previously developed to evaluate pain assessment tools.
Results.  Five different pain assessment tools were identified that had been used with unconscious or sedated intensive care patients. All five instruments included behavioural indicators and three included physiological indicators. Their psychometric properties varied and it was not possible to deduce their clinical utility.
Conclusion.  All instruments were reasonably new. In most of them psychometric testing was in an early stage or even absent. Before any of the reported instruments can be chosen in preference to others, it is essential to test their validity, reliability and feasibility further.     

Place of family in recovery models for those with a mental illness

Within the context of mental illness, there is an acknowledgement that the social environment is critical to recovery. Nonetheless, how family roles and interactions are presented in recovery frameworks is unclear. This systematic review sought to: (i) identify how family is defined in recovery models, and (ii) synthesize how family relationships and roles are incorporated into recovery models for those with a mental illness. A systematic search of electronic databases was conducted for peer reviewed, English language papers published between 1980 to April 2013, from Ovid MEDLINE, PsycINFO, Proquest, CINAHL plus and Web of Knowledge. Studies were included if they presented a recovery framework and include primary data from people with a mental illness where family was incorporated. A narrative thematic analysis was conducted on the eligible 31 studies, using inductive, open coding techniques. Eight studies did not define what was meant by ‘family’ while 10 studies focused exclusively on an individual's relationships with parents; six papers collected parenting demographics. Family roles included being a (adult) child, parent, spouse and being part of a ‘family’. Family interactions involved being passive recipients of family support, caring for elderly parents and children and reciprocal, give and take relationships. Family interactions and roles offer the opportunity to both facilitate and impede recovery.     

It starts with access! A grounded theory of family members working to get through critical illness

The critical illness of an adult constitutes a crisis for the patient's family. They relinquish primary responsibility for the physical well-being of the patient to health providers, but remain involved, working to get through the situation. What constitutes this "work"? Results of two grounded theory studies revealed that family members were engaged first in the pivotal work of gaining access because of their overarching need to be present with and for their critically ill relative. Other work included patient-related work, nurse/physician-related work, and self-related work. These findings extend our understanding of their experiences beyond current knowledge and paternalistic perceptions of burden, stress and coping, and need recognition and fulfillment. Critical care nurses are exhorted to support family members in their work by removing barriers to patient, staff, and information access and to partnering opportunities.     

Management of chronic illness: voices of rural women

BACKGROUND: The prevalence and cost of chronic illness globally and in the United States of America continue to escalate and the day-to-day management of these conditions presents a major challenge. The burden of chronic illness disproportionately affects vulnerable populations such as women and those living in rural areas. AIM: To add to the knowledge base of illness management by chronically ill rural women through examining their individual perceptions of the illness experience. METHOD: The Women to Women project provided a nursing research-based computer intervention model for conducting support groups, providing health education, and fostering self-care, via personal computers and evaluated its effect on the women's psychosocial health. FINDINGS: Fatigue and pain were the major physical symptoms that impacted the women's quality of life, with depression and stress being the primary emotions they experienced. The characteristics of humour, hope, and courage were key in their successful adaptation to living with chronic illness. CONCLUSIONS: The women's voices relate how they manage their illness responses and adaptation mechanisms. The data provide nurses with information to heighten their sensitivity to clients' day-to-day needs and experiences. It will assist them in their designing and planning of interventions that will enable clients to adapt and to have the best quality of life possible within the limitations of their chronic illnesses. The data are also important to nurses involved in rural research and theory development concerning self-management and adaptation to chronic illnesses.     

Instruments evaluating the quality of the clinical learning environment in nursing education: A systematic review of psychometric properties

BackgroundThe clinical learning environment is fundamental to nursing education paths, capable of affecting learning processes and outcomes. Several instruments have been developed in nursing education, aimed at evaluating the quality of the clinical learning environments; however, no systematic review of the psychometric properties and methodological quality of these studies has been performed to date.ObjectivesThe aims of the study were: 1) to identify validated instruments evaluating the clinical learning environments in nursing education; 2) to evaluate critically the methodological quality of the psychometric property estimation used; and 3) to compare psychometric properties across the instruments available.DesignA systematic review of the literature (using the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines) and an evaluation of the methodological quality of psychometric properties (using the COnsensus-based Standards for the selection of health Measurement INstruments guidelines).Data sourcesThe Medline and CINAHL databases were searched. Eligible studies were those that satisfied the following criteria: a) validation studies of instruments evaluating the quality of clinical learning environments; b) in nursing education; c) published in English or Italian; d) before April 2016.Review methodsThe included studies were evaluated for the methodological quality of the psychometric properties measured and then compared in terms of both the psychometric properties and the methodological quality of the processes used.ResultsThe search strategy yielded a total of 26 studies and eight clinical learning environment evaluation instruments. A variety of psychometric properties have been estimated for each instrument, with differing qualities in the methodology used. Concept and construct validity were poorly assessed in terms of their significance and rarely judged by the target population (nursing students). Some properties were rarely considered (e.g., reliability, measurement error, criterion validity), whereas others were frequently estimated, but using different coefficients and statistical analyses (e.g., internal consistency, structural validity), thus rendering comparison across instruments difficult. Moreover, the methodological quality adopted in the property assessments was poor or fair in most studies, compromising the goodness of the psychometric values estimated.ConclusionsClinical learning placements represent the key strategies in educating the future nursing workforce: instruments evaluating the quality of the settings, as well as their capacity to promote significant learning, are strongly recommended. Studies estimating psychometric properties, using an increased quality of research methodologies are needed in order to support nursing educators in the process of clinical placements accreditation and quality improvement.     

A concept analysis of health-related quality of life in young people with chronic illness

Aims. To critique existing concept analyses of quality of life and develop a definition applicable for young people with chronic illness. Background. Quality of life is a commonly used phrase but there is no universal definition. Five perspectives of quality of life have been proposed: sociological, economic, psychological, philosophical and ethical. However, health has emerged as an important but distinct perspective. The nursing profession has made a substantial contribution to the understanding of the interrelationship of health and quality of life. Design. Literature review. Methods. A search on electronic databases to April 2007 was made using the terms ‘quality of life’ and ‘concept analysis’. Papers were included in the review if they used a recognised method of concept analysis and were conducted by nurses. A new concept analysis was then performed specifically focusing on young people’s experiences of living with chronic illness. Results. Eight concept analyses were identified, all of which had limitations. All the concept analyses were based on adult literature so did not take into consideration developmental changes, language level, or young people’s construction of health and illness. The new concept analysis found that young people living with chronic illness generally view themselves and their lives in the same way as their healthy peers. While their aspirations are often constrained by illness and treatment the relationship between illness and life cannot be seen in isolation of development. Conclusion. Previous definitions of quality of life derived from concept analyses with adult populations do not adequately represent the experience of young people with chronic illnesses, but can be made more specific by incorporating important attributes such as developmental stage and the importance of peer group and family. Relevance to clinical practice. The current analysis provides a clear definition of quality of life from the health perspective which is specific for use with young people with chronic illness to guide practice and research.     

病人安全文化/氛围测量工具比较分析

目的：系统地比较和分析病人安全文化/氛围测量工具的性能和特点,为研究者正确选择测量工具提供帮助。方法：应用系统回顾和比较研究的方法,收集近20年来发展并应用在医疗保健领域的病人安全文化/氛围测量工具,比较这些工具的测量维度和性能特点。结果：6个英文量表和1个中文量表符合研究纳入标准,被本研究纳入。这些研究量表的测量维度变异较大,从1～12个不等,但多涉及病人安全的管理和领导、安全方面的政策、沟通交流情况、安全事件的报告以及人员配置方面。这些研究工具性能的建立和检验方法不尽相同,多使用了因子分析法以及对量表信度检验的方法。研究工具性能指标也表现出差异性。结论：现有的病人安全文化/氛围测量工具有着不同的测量维度、工具性能和适用性,研究者应根据自身的研究目的,结合这些工具的特点做出恰当的选择。     

Nurses’ views and practices on parental mental illness: An integrative review

When a parent has a mental health problem, family members can be affected by it. Nursing professionals can provide care for the whole family, including children. Nurses can support the parental role of parents with mental illness. This integrative review aimed at the following: To identify and to synthesize the views and practices of nurses on parental mental illness (PMI). An integrative review methodology was employed, following PRISMA guidelines. Theoretical and empirical literature was included. Twenty-three articles were obtained to be analysed, using the Whittemore and Knafl approach. A lack of knowledge about nurses' views and practices on PMI was found. Especially, in some demographic areas such as Mediterranean countries and Central and South America. Different issues which influence how nurses perceive PMI were identified: subjective meaning of family concept, personal experience of being parent, and perceptions of mental illness, among others. The main findings on nurses’ practices were as follows: guidelines to implement family-focused practices, knowledge, and skills; therapeutic relationship; and teamwork and interagency communication; among others. These issues are intimately related. They could act as enablers or barriers to support parental role of parents with mental illness. Adequate guidelines and policies are necessary to support parents with mental illness and their families. There is a need to include knowledge about PMI and family-focused approach in nursing education curricula. Training could include reflection on nurses’ experiences and personal values to become aware of how these can affect their interventions and practices.