Person-centered Measure Research Articles

USING HUMAN CENTERED DESIGN TO DEVELOP TWO NEW MEASURES OF LIVING WELL WITH DEMENTIA

Abstract Background New measures are needed that can provide a holistic approach to capturing salient outcomes contributing to quality of life in dementia. Purpose: To use human centered design to develop, prototype and evaluate new positive psychosocial measures for persons living with dementia Methods This project used a conceptual framework of human centered design to obtain and analyze data from multiple sources, including individual and focus group interviews, observations in the field and related methods to enhance empathy for the lived experience of dementia, and to design prototypes for two new measures. Results Qualitative analysis of interview data, integration of data from the theoretical and empirical literature and human centered design techniques including brainstorming and ideation were used to define constructs and create prototypes for a new Living Well with Dementia Inventory and Good Day-Bad Day assessment tool. Results of qualitative analysis, item development, and initial validity assessment will be presented. Conclusion Human centered design is a useful method for development of person-centered measures. This method may complement traditional methods of instrument development and CBPR.

Translating the Coma Recovery Scale-Revised into Clinical Practice Using Person-Centered Measurement Principles

<h3>Research Objectives</h3> To co-create a Recovery Ruler, that visualizes Coma Recovery Scale-Revised (CRS-R) assessment results, reflecting person-centered measurement principles (co-created, patient-driven, holistic, transparent, comprehensible and timely). We examined pre-implementation factors (usability, acceptability, appropriateness, and feasibility) to determine whether the Recovery Ruler was ready for usability testing. <h3>Design</h3> Concurrent mixed methods using two design groups and four surveys. <h3>Setting</h3> N/A. <h3>Participants</h3> 6 family care partners (FCP) and 8 rehabilitation practitioners (RP) who have experience caring for a person with disorders of consciousness following a brain injury. <h3>Interventions</h3> N/A. <h3>Main Outcome Measures</h3> System Usability Scale (SUS), Acceptability of Intervention Measure (AIM), Intervention Appropriateness Measure (IAM), and Feasibility of Intervention Measure (FIM). <h3>Results</h3> An initial prototype of a Recovery Ruler visualized the CRS-R keyform from Rasch analysis. Content analysis identified Recovery Ruler elements that could be added, removed, or changed. During design group 1, participants added a descriptive text box to incorporate the patient's preferences (patient driven), suggested the Recovery Ruler be laminated to place at the patient's bedside (transparent), and changed words to clarify concepts (comprehensible). These changes were reflected in a revised Recovery Ruler during Design Group 2. There was a significant increase between the SUS scores from the revised Recovery Ruler shown during Design Group 2 (M=83.3, SD=11.9) and initial Recovery Ruler prototype shown in Design Group 1 (M= 77.9, SD=13.3) indicating improved usability; t(11) 1.84, p=0.045. The Wilcoxon singed rank test suggested that results from Design Group 2 on the AIM and IAM were statistically significantly higher than the results on these scales from Design Group 1 indicating improved acceptability and appropriateness. The FIM did not show a statistically significant difference between scores from each design group, but the median and mean were consistently > 4 (agree) on the average scale score indicating good feasibility. <h3>Conclusions</h3> Complex information from a Rasch co-calibration was embedded into the Recovery Ruler that reflects person-centered measurement principles. FCPs and RPs determined the Recovery Ruler is usable, acceptable, appropriate, and feasible, ultimately ready for usability testing. <h3>Author(s) Disclosures</h3> N/A.

Reduction of the Quality of Contraceptive Counseling (QCC) scale to a short version (QCC-10) in Ethiopia, India, and Mexico

ObjectiveTo reduce the Quality of Contraceptive Counseling (QCC) scale to a shortened version, coined the QCC-10, for use in measuring client-reported quality of counseling across varied settings. Study designSecondary psychometric analysis of data collected for validating full versions of the QCC scale (QCC-Mexico, QCC-Ethiopia, QCC-India) and expert voting to reduce the original 26 QCC items to a 10-item set. ResultsExploratory factor analysis revealed a clear one-factor solution for the QCC-10 in each country. Factor loadings were consistently >0.4 for all but two items; both were retained due to their importance to content validity. Internal consistency reliability of the QCC-10 was α=0.8 in Mexico and Ethiopia, and α=0.5 in India. QCC-10 scores were highly and positively correlated with a dichotomous overall measure of client experience and intention to initiate selected method, indicating convergent validity. ConclusionThe QCC-10 offers an innovative, cross-cultural approach to measuring quality in contraceptive counseling. Future efforts should examine its validity and reliability for use globally, with additional exploration of how to best measure negative aspects of care, particularly in India where such items were problematic. Thoughtful, nuanced measurement of client perspectives on their counseling experiences, available via the QCC-10, is critical to monitoring and improving quality of person-centered care and the fulfilment of human rights in contraceptive services worldwide. ImplicationsCross-cultural, person-centered measures of quality in contraceptive counseling, such as the QCC-10, can help inform efforts to improve quality of family planning services and fulfillment of human rights. Future work will continue to explore the validity of this 10-item measure for use in various settings.

Supply-Side Versus Demand-Side Unmet Need: Implications for Family Planning Programs.

Despite its central importance to global family planning, the "unmet need for contraception" metric is frequently misinterpreted. Often conflated with a lack of access, misinterpretation of what unmet need means and how it is measured has important implications for family planning programs. We review previous examinations of unmet need, with a focus on the roles of access and demand for contraception, as well as the role of population control in shaping the indicator's priorities. We suggest that disaggregating unmet need into "demand-side unmet need" (stemming from lack of demand) and "supply-side unmet need" (stemming from lack of access) could allow current data to be leveraged into a more person-centered understanding of contraceptive need. We use Demographic and Health Survey data from seven sub-Saharan African countries to generate a proof-of-concept, dividing women into unmet need categories based on reason for contraceptive nonuse. We perform sensitivity analyses with varying conceptions of access and disaggregate by education and marital status. We find that demand-side unmet need far exceeds supply-side unmet need in all scenarios. Focusing on supply-side rather than overall unmet need is an imperfect but productive step toward person-centered measurement, while more sweeping changes to family planning measurement are still required.

The Need for Person-Centered Measures for Dementia Research and Care

The importance of person-centered medical and psychosocial care has become widely recognized, but there is abundant evidence that care is not always person-centered. In 2018, the Alzheimer’s Association published their evidence-informed Dementia Care Practice Recommendations, which address nine domains all grounded in a person-centered perspective. Following that work, the Association launched LINC-AD -- Leveraging an Interdisciplinary Consortium to Improve Care and Outcomes for Persons Living with Alzheimer's and Dementia. An early effort of LINC-AD, and the focus of this symposium, examined what measures are available to guide care and assess outcomes, and the extent to which they embrace person-centeredness. The results have been disappointing. This session will highlight the importance of person-centered measures in five domains of the Dementia Care Practice Recommendations, based on comprehensive reviews of literature. Each paper, presented by LINC-AD research advisors, will examine available measures and raise questions about gaps using a person-centered lens. Katie Maslow will describe frequently used measures and identify person-centered measures that could be added to studies of alternate procedures intended to increase detection and diagnosis. Drs. Mast and Molony will discuss a person-centered approach to item development and testing for assessment. Emilee Ertle will discuss the need to measure interpersonal and contextual factors associated with behavioral expressions. Drs. Prizer and Zimmerman will compare measures of dressing ability and their person-centered components. Dr. Calkins will examine the strengths and limitations of environmental assessment tools. As Discussant, Dr. Gitlin will integrate the findings from all five presentations, suggesting directions for the future.

Adding Person-Centered Measures to Research on Detection and Diagnosis of Dementia

In the United States, numerous studies on detection and diagnosis of dementia show that large proportions of subjects refuse initial screening tests. Moreover, among those who accept the tests, score poorly, and are therefore referred for a diagnostic evaluation, large proportions do not follow up to get the evaluation. Available data on characteristics of subjects who refuse initial screening and follow-up evaluation suggest that incorporating procedures based on person-centered concepts and practices, such as procedures that acknowledge individuals’ unique characteristics and attempt to involve, enable, and empower them, could lead to more effective detection and diagnosis. Based on results of an analysis of measures used in studies conducted in the U.S. and elsewhere, this presentation will describe frequently used measures and identify person-centered measures that could be added to studies of alternate procedures intended to increase detection and diagnosis.

Using Measurement to Highlight Occupational Therapy's Distinct Value.

Traditional measurement approaches in health care focus on group data, virtually ignoring the individual client. To demonstrate the distinct value of occupational therapy, we need a measurement model that focuses on the person and generates outputs to inform daily practice. Traditional methods of establishing norms and predictive validity do not inform the development of interventions and goal setting. In this Eleanor Clarke Slagle Lecture, I use a person-centered measurement model that focuses on the person, versus the instrument, to demonstrate how person-centered measurement can be immediately used to identify the just-right challenge for the client. Person-centered measurement can be both the basis for designing interventions specific to the client and the foundation for setting empirically appropriate short-term and long-term goals. Occupational therapy practitioners can lead health care by immediately applying person-centered measurement to address the needs of individual clients and, moreover, to reveal the distinct value of occupational therapy.

Using Measurement to Highlight Occupational Therapy's Distinct Value.

Traditional measurement approaches in health care focus on group data, virtually ignoring the individual client. To demonstrate the distinct value of occupational therapy, we need a measurement model that focuses on the person and generates outputs to inform daily practice. Traditional methods of establishing norms and predictive validity do not inform the development of interventions and goal setting. In this Eleanor Clarke Slagle Lecture, I use a person-centered measurement model that focuses on the person, versus the instrument, to demonstrate how person-centered measurement can be immediately used to identify the just-right challenge for the client. Person-centered measurement can be both the basis for designing interventions specific to the client and the foundation for setting empirically appropriate short-term and long-term goals. Occupational therapy practitioners can lead health care by immediately applying person-centered measurement to address the needs of individual clients and, moreover, to reveal the distinct value of occupational therapy.

Evaluating the perspectives of those with severe physical impairments while learning BCI control of a commercial augmentative and alternative communication paradigm

ABSTRACT Augmentative and alternative communication (AAC) techniques can provide access to communication for individuals with severe physical impairments. Brain–computer interface (BCI) access techniques may serve alongside existing AAC access methods to provide communication device control. However, there is limited information available about how individual perspectives change with motor-based BCI-AAC learning. Four individuals with ALS completed 12 BCI-AAC training sessions in which they made letter selections during an automatic row-column scanning pattern via a motor-based BCI-AAC. Recurring measures were taken before and after each BCI-AAC training session to evaluate changes associated with BCI-AAC performance, and included measures of fatigue, frustration, mental effort, physical effort, device satisfaction, and overall ease of device control. Levels of pre- to post-fatigue were low for use of the BCI-AAC system. However, participants indicated different perceptions of the term fatigue, with three participants discussing fatigue to be generally synonymous with physical effort, and one mental effort. Satisfaction with the BCI-AAC system was related to BCI-AAC performance for two participants, and levels of frustration for two participants. Considering a range of person-centered measures in future clinical BCI-AAC applications is important for optimizing and standardizing BCI-AAC assessment procedures.

Abortion quality of care from the client perspective: a qualitative study in India and Kenya.

Quality healthcare is a key part of people’s right to health and dignity, yet access to high-quality care can be limited by legal, social and economic contexts. There is limited consensus on what domains constitute quality in abortion care and the opinions of people seeking abortion have little representation in current abortion quality measures. In this qualitative study, we conducted 45 interviews with abortion clients in Mumbai, India, and in Eldoret and Thika, Kenya, to assess experiences with abortion care, definitions of quality and priorities for high-quality abortion care. Among the many aspects of care that mattered to clients, the client–provider relationships emerged as essential. Clients prioritized being treated with kindness, respect and dignity; receiving information and counselling that was personalized to their individual situation and reassurance and support from their provider throughout the entire abortion process, including follow-up after the abortion. Many clients also noted the importance of skilled providers and appropriate care. There were similarities across the two country contexts, yet there were some differences in how clients defined high-quality care; therefore, specific political and cultural influences must be considered when implementing measurement and improving person-centred quality of care. These domains, particularly interpersonal interactions, should be prioritized in India and Kenya when health systems, facilities and providers design person-centred measures for quality in abortion care.

Culture in the spotlight—cultural adaptation and content validity of the integrated palliative care outcome scale for dementia: A cognitive interview study

Background: Dementia is a life-limiting disease with high symptom burden. The Integrated Palliative Care Outcome Scale for Dementia (IPOS-Dem) is the first comprehensive person-centered measure to identify and measure palliative care needs of people with dementia. However, such a measure is missing in the German health care system. Aim: To develop a culturally adapted German version of the IPOS-Dem and determine its content validity as a foundation for comprehensive psychometric testing. Design: Cognitive interview study with intermittent analysis and questionnaire adaptation. Interview guide and coding frame followed thematic analysis according to Willis complemented by Tourangeau’s model of cognitive aspects of survey methodology: comprehension, retrieval, judgment, response. Participants: Purposive sample with professionals (n = 29) and family carers (n = 6) of people with advanced dementia in seven nursing homes and person’s own home care in four interview rounds (n = 11; 10; 7; 7). Results: IPOS-Dem was regarded as comprehensive and accessible. Cultural adaption pertained to issues of comprehension and judgment. Comprehension challenges referred to the person-centered concept of “being affected by” used in the POS-measures. Judgment problems related to persons with limited communication causing challenges in assessment. Conclusion: Most issues of cultural adaptation could be addressed by questionnaire modifications. However, interviews unveiled fundamental challenges for using proxy reported person-centered assessments. Continuous training on how to use the instrument is imperative to integrate the person-centered approach of palliative care into nursing homes as a key provider of generalist palliative care for people with dementia. The refined version is ready for psychometric testing.

A Stakeholder-Driven Qualitative Study to Define High Quality End-of-Life Care for Children With Cancer

ContextAmong adults with cancer, measures for high quality end-of-life care (EOLC) include avoidance of hospitalizations near end of life. For children with cancer, no measures exist to evaluate or improve EOLC, and adult quality measures may not apply. ObjectiveWe engaged key stakeholders to explore EOLC priorities for children with cancer and their families, and to examine relevance of existing adult EOLC quality measures for children with cancer. MethodsIn a multicenter qualitative study, we conducted interviews and focus groups with: adolescents and young adults (AYAs) with advanced cancer, parents of children with advanced cancer, bereaved parents, and interdisciplinary healthcare professionals. We transcribed, coded, and employed thematic analysis to summarize findings. ResultsWe enrolled 54 stakeholders (25 parents [including 12 bereaved parents], 10 AYAs, and 19 healthcare professionals). Participants uniformly prioritized direct communication with children about preferences and prognosis, interdisciplinary care, symptom management, and honoring family preference for location of death. Many participants valued access to the emergency department or hospital for symptom management or supportive care, which diverges from measures for high quality EOLC in adults. Most wished to avoid mechanical ventilation and cardiopulmonary resuscitation. Notably, participants generally valued hospice; however, few understood hospice care or had utilized its services. ConclusionChildhood cancer stakeholders define high quality EOLC primarily through person-centered measures, characterizing half of existing adult-focused measures as limited in relevance to children. Future research should focus on developing techniques for person-centered quality measurement to capture attributes of greatest importance to children with cancer and their families.

Manual ability in hand surgery patients: Validation of the ABILHAND scale in four diagnostic groups.

BackgroundPatients treated in hand surgery (HS) belong to different demographic groups and have varying impairments related to different pathologies. HS outcomes are measured to assess treatment results, complication risks and intervention reliability. A one-dimensional and linear measure would allow for unbiased comparisons of manual ability between patients and different treatment effects.ObjectiveTo adapt the ABILHAND questionnaire through Rasch analysis for specific use in HS patients and to examine its validity.MethodsA preliminary 90-item questionnaire was presented to 216 patients representing the diagnoses most frequently encountered in HS, including distal radius fracture (n = 74), basal thumb arthritis (n = 66), carpal tunnel syndrome (n = 53), and heavy wrist surgery (n = 23). Patients were assessed during the early recovery and in the late follow-up period (0–3 months, 3–6 months and >6 months), leading to a total of 305 assessments. They rated their perceived difficulty with queried activities as impossible, difficult, or easy. Responses were analyzed using the RUMM2030 software. Items were refined based on item-patient targeting, fit statistics, differential item functioning, local independence and item redundancy. Patients also completed the QuickDASH, 12-item Short Form Survey (SF-12) and a numerical pain scale.ResultsThe rating scale Rasch model was used to select 23 mostly bimanual items on a 3-level scale, which constitute a unidimensional, linear measure of manual ability with good reliability across all included diagnostic groups (Person-Separation Index = 0.90). The resulting scale was found to be invariant across demographic and clinical subgroups and over time. ABILHAND-HS patient measures correlated significantly (p<0.001) with the QuickDASH (r = -0.77), SF-12 Physical Component Summary (r = 0.56), SF-12 Mental Component Summary (r = 0.31), and pain scale (r = -0.49).ConclusionABILHAND-HS is a robust person-centered measure of manual ability in HS patients.

Towards a comprehensive, person-centred assessment of health literacy: translation, cultural adaptation and psychometric test of the Dutch Health Literacy Questionnaire

BackgroundMany health literacy instruments focus on reading skills, numeracy and/or information processing aspects only. In the Netherlands, as in other countries, the need for a comprehensive, person-centred measure of health literacy was observed and consequently the decision was made to translate the Health Literacy Questionnaire (HLQ) into Dutch. The HLQ has nine health literacy domains covering people’s experiences and skills. This research sought to translate, culturally adapt and psychometrically test the HLQ.MethodsThe translation and adaptation was done using a systematic approach with forward translation guided by item intents, blind back translation, and a consensus meeting with the developer. The Dutch version of the HLQ was applied in a sample of non-hospitalized, chronically ill patients. Descriptive statistics were generated to describe mean, standard deviation and floor and ceiling effects for all items. A Confirmatory Factor Analysis (CFA) model was fitted to the data. Scores on the nine domains of the HLQ were compared across demographic and illness characteristics as a form of known-groups validity. Psychometric analyses included Cronbach’s alpha, item-rest and item-remainder correlations.ResultsUsing CFA, the Dutch HLQ psychometric structure was found to strongly align with the hypothesised (original) nine independent domains of the English version. The nine scales were found to be highly reliable (all scales had alpha between 0.83 and 0.94). Six of the nine HLQ-scales had items that show ceiling-effects. There were no ceiling effects present at the scale level. Scores on the scales of the HLQ differed according to demographic and illness characteristics: people who were older, lower educated and living alone and patients with multiple chronic diseases generally scored lower.ConclusionsThe Dutch version of the HLQ is a robust and reliable instrument that measures nine different domains of health literacy. The questionnaire was tested in a sample of chronically ill patients, and should be further tested in the general population as well as in different disease groups. The HLQ is a major addition to currently available instruments in the Netherlands, since it measures health literacy from a multi-dimensional perspective and builds on patients’ experiences and skills.

Intersectionality of Gender and Poverty on Symptom Suffering Among Adolescents with Cancer (RP423)

•Describe the need for attending to gender and poverty in assessing symptom suffering among adolescents with cancer.•Explain the importance of intersectionality of gender-poverty combinations for patient-reported outcomes.•Discuss baseline finding from a pediatric Advance Care Planning trial. Cancer survival has improved far less for adolescents than it has for older patients. Bona and colleagues identified adverse effects of poverty on relapse and survival for children with cancer. Our objective was to explore potential latent classes/subpopulations in the AYA cancer population with respect to cancer-related symptoms at baseline and to test for gender differences in regard to cancer-related symptoms. Hypothesis 1: Distinctive latent classes/groups exist in the AYA cancer population with respect to cancer-related symptoms. Hypothesis 2: The likelihood of being classified into specific symptom classes will vary in different gender-poverty combinations. Four PROMIS® (Patient-Reported Outcomes Measurement Information System) person-centered measures evaluated Anxiety, Depression, Pain Interference, and Fatigue. The PROMIS scores were dichotomized. AYAs with cancer (N=126) were aged 14 to 21 years, 57% female, 80% white, 26% income equal to or below the Federal poverty level. Latent class analysis (LCA) showed that AYAs were classified into three a priori unknown groups. Class 1, 59%, were in the Low suffering group (lower probabilities of having high scores on all 4 PROMIS measures); Class 2, 28%, were in the High suffering group (higher probabilities of having high scores on all 4 PROMIS measures); and Class 3, 13%, Pain interference/fatigue suffering group (high probabilities of having high scores on only pain interference and fatigue with low scores on anxiety and depression). Multinomial logit model indicated no significant differences in symptoms by gender, age, race or income. Rather, female adolescents in poverty were more likely to be in the High Suffering group (3.41, p=0.0366). Palliative care referrals should be prioritized for female adolescents with cancer and living in poverty, thereby directing limited resources to those most in need in a timely manner.

Does Living in a Higher Proportion Minority Facility Improve Quality of Life for Racial/Ethnic Minority Residents in Nursing Homes?

Background and ObjectivesThe proportion of racial/ethnic minority older adults in nursing homes (NHs) has increased dramatically and will surpass the proportion of white adults by 2030.Yet, little is known about minority groups’ experiences related to the quality of life (QOL). QOL is a person-centered measure, capturing multiple aspects of well-being. NH quality has been commonly measured using clinical care indicators, but there is growing recognition for the need to include QOL. This study examines the role of individual race/ethnicity, facility racial/ethnic composition, and the interaction of both for NH resident QOL.Research Design and MethodsWe used a unique state-level data set that includes self-reported QOL surveys with a random sample of long-stay Minnesota NH residents, using a multidimensional measure of QOL. These surveys were linked to resident clinical data from the Minimum Dataset 3.0 and facility-level characteristics. Minnesota is one of the two states in the nation that collects validated QOL measures, linked to data on resident and detailed facility characteristics. We used mixed-effects models, with random intercepts to model summary QOL score and individual domains.ResultsWe identified significant racial disparities in NH resident QOL. Minority residents report significantly lower QOL scores than white residents, and NHs with higher proportion minority residents have significantly lower QOL scores. Minority residents have significantly lower adjusted QOL than white residents, whether they are in low- or high-minority facilities, indicating a remaining gap in individual care needs.Discussion and ImplicationsThe findings highlight system-level racial disparities in NH residents QOL, with residents who live in high-proportion minority NHs facing the greatest threats to their QOL. Efforts need to focus on reducing racial/ethnic disparities in QOL, including potential public reporting (similar to quality of care) and resources and attention to provision of culturally sensitive care in NHs to address residents’ unique needs.

PROMIS®: Standardizing the patient voice in health psychology research and practice.

The Patient-Reported Outcomes Measurement Information System® (PROMIS®) is a collection of person-centered measures of physical, mental, and social health in children and adults. Developed using state-of-the-art psychometric methods, these measures are offered as fixed-length questionnaires and computerized adaptive tests, with translations available in Spanish and other languages. This special issue presents articles that illustrate the use of PROMIS® measures to advance health behavior research across a wide range of health studies. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Profiling guide dog handlers to support guide dog matching decisions

Purpose: This Australian study piloted a new measure of Orientation and Mobility to better understand the functional mobility of guide dog handlers with low vision or blindness. It is expected that this measure can be used to better match guide dogs to their handlers.Materials and methods: The new Orientation and Mobility Outcomes tool scores a client in Stable/Familiar and Dynamic/Unfamiliar conditions, also considering Travel-Related Wellbeing. Semi-structured interviews were conducted with 51 guide dog handlers, during which travel skills were co-rated with an interviewer.Results: A cluster analysis of the Orientation and Mobility Outcomes data identified four mobility styles: intrepid explorers, social navigators, independent roamers and homebodies. The differences between these clusters had more to do with mental mapping skills than level of vision, and different guide dog characteristics were needed to support the travel styles identified for each cluster.Conclusions: The results confirm the importance of the Orientation and Mobility Outcomes tool as a sensitive, person-centred measure of the impact of Orientation and Mobility and guide dog training. In particular, the four mobility clusters provide a new perspective on matching guide dogs with clients, also suggesting the need for a more personalised look at the guide dog training process.Implications for RehabilitationOrientation and Mobility Outcomes data seem precise enough to support and inform the process of matching guide dogs to handlers.Uniform results cannot be expected from guide dog mobility in handlers – age, stage of life, health and spatial cognition impact the competence and travel style of guide dog handlers, whereas vision is less important.Sharing the work of visual interpretation and decision making with a guide dog makes independent travel more possible.Valuable dog characteristics that are specific to handler requirements might be bred or trained from puppy raising onwards, creating a more diverse pool of dogs to draw upon.

Development of Measure Yourself Concerns and Wellbeing for informal caregivers of people with cancer\u2014a multicentred study

PurposeMeasure Yourself Concerns and Wellbeing (MYCaW) is a validated person-centred measure of the concerns and wellbeing of people affected by cancer. Research suggests that the concerns of informal caregivers (ICs) are as complex and severely rated as people with cancer, yet MYCaW has only been used to represent cancer patients’ concerns and wellbeing. This paper reports on the development of a new qualitative coding framework for MYCaW to capture the concerns of ICs, to better understand the needs of this group.MethodsThis multicentred study involved collection of data from ICs receiving support from two UK cancer support charities (Penny Brohn UK and Cavendish Cancer Care). Qualitative codes were developed through a detailed thematic analysis of ICs’ stated concerns.ResultsThematic analysis of IC questionnaire data identified key themes which were translated into a coding framework with two overarching sections; (1) ‘informal caregiver concerns for self’ and (2) ‘informal caregiver concerns for the person with cancer’. Supercategories with specific accompanying codes were developed for each section. Two further rounds of framework testing across different cohorts allowed for iterative development and refinement of the framework content.ConclusionsThis is the first person-centred tool specifically designed for capturing IC’s concerns through their own words. This coding framework will allow for IC data to be analysed using a rigorous and reproducible method, and therefore reported in a standardised way. This may also be of interest to those exploring the needs of ICs of people in other situations.

Family Satisfaction With Nursing Home Care: Findings and Implications From Two State Comparison.

Family satisfaction, while recognized as important, is frequently missing from validated measures of long-term care quality. This is the first study to compare family satisfaction across two states using validated measures and to compare the organizational and structural factors associated with higher family satisfaction with nursing home care. Data sources are family satisfaction surveys from Minnesota (MN) and Ohio (OH), linked to facility characteristics from Certification and Survey Provider Enhanced Reports (CASPER) for both states (N = 378 facilities for MN; N = 926 facilities for OH). Activities and food were among lowest rated items in both states. Relationships with staff were the highest rated domain. Higher occupancy rates, smaller facility size, and non-profit ownership consistently predicted better satisfaction in both states. Our findings show consistent organizational factors associated with family satisfaction and provide further evidence to the validity of family satisfaction as a person-centered measure of quality. This lays the foundation for tool development on the national level.