Development and testing of an instrument to measure contextual factors influencing self-care decisions among adults with chronic illness.

BACKGROUND: Decisions about how to manage bothersome symptoms of chronic illness are complex and influenced by factors related to the patient, their illness, and their environment. Naturalistic decision-making describes decision-making when conditions are dynamically evolving, and the decision maker may be uncertain because the situation is ambiguous and missing information. Contextual factors, including time stress, the perception of high stakes, and input from others may facilitate or complicate decisions about the self-care of symptoms. There is no valid instrument to measure these contextual factors. The purpose of this study was to develop and test a self-report instrument measuring the contextual factors that influence self-care decisions about symptoms. METHODS: Items were drafted from the literature and refined with patient input. Content validity of the instrument was evaluated using a Delphi survey of expert clinicians and researchers, and cognitive interviews with adults with chronic illness. Psychometric testing included exploratory factor analysis to test dimensionality, item response theory-based approaches for item recalibration, confirmatory factor analysis to generate factor determinacy scores, and evaluation of construct validity. RESULTS: Ten contextual factors influencing decision-making were identified and multiple items per factor were generated. Items were refined based on cognitive interviews with five adults with chronic illness. After a two round Delphi survey of expert clinicians (n = 12) all items had a content validity index of > 0.78. Five additional adults with chronic illness endorsed the relevance, comprehensiveness, and comprehensibility of the inventory during cognitive interviews. Initial psychometric testing (n = 431) revealed a 6-factor multidimensional structure that was further refined for precision, and high multidimensional reliability (0.864). In construct validity testing, there were modest associations with some scales of the Melbourne Decision Making Questionnaire and the Self-Care of Chronic Illness Inventory. CONCLUSION: The Self-Care Decisions Inventory is a 27-item self-report instrument that measures the extent to which contextual factors influence decisions about symptoms of chronic illness. The six scales (external, urgency, uncertainty, cognitive/affective, waiting/cue competition, and concealment) reflect naturalistic decision making, have excellent content validity, and demonstrate high multidimensional reliability. Additional testing of the instrument is needed to evaluate clinical utility.

Measuring self-care in the general adult population: development and psychometric testing of the Self-Care Inventory.

BACKGROUND: Self-care is important at all stages of life and health status to promote well-being, prevent disease, and improve health outcomes. Currently, there is a need to better conceptualize self-care in the general adult population and provide an instrument to measure self-care in this group. Therefore, the aim of this study was to develop and evaluate the Self-Care Inventory (SCI), a theory-based instrument to measure self-care in the general adult population. METHODS: Based on the Middle Range Theory of Self-Care, the 20-item SCI was developed with three scales: Self-Care Maintenance (8 items), Self-Care Monitoring (6 items), and Self-Care Management (6 items). A cross sectional study with a US-based sample (n = 294) was conducted to test the SCI. Internal validity was assessed with Confirmatory Factor Analysis. Internal consistency reliability was assessed with Cronbach alpha for unidimensional scales or composite reliability and the global reliability index for multidimensional scales. Construct validity was investigated with Pearson correlation to test the relationship between general self-efficacy, positivity, stress, and self-care scores. RESULTS: The Self-Care Maintenance and Management scales were multidimensional and the Self-Care Monitoring scale was unidimensional. The global reliability index for multidimensional scales was 0.85 (self-care maintenance) and 0.88 (self-care management). Cronbach alpha coefficient of the self-care monitoring scale was 0.88. Test-retest reliability was 0.81 (self-care maintenance), 0.91 (self-care monitoring), and 0.76 (self-care management). The General Self-Efficacy Scale was positively related to all three self-care scale scores: self-care maintenance r = 0.46, p < 0. 001, self-care monitoring r = 0.31, p < 0. 001, and self-care management r = 0.32, p < 0. 001. The positivity score was positively related to self-care maintenance (r = 0.42, p < 0. 001), self-care monitoring (r = 0.29, p < 0. 001), and self-care management (r = 0.34, p < 0. 001) scores. The perceived stress was positively related to the self-care management (r = 0.20, p < 0. 001) score. CONCLUSIONS: The SCI is a theoretically based instrument designed to measure self-care in the general adult population. Preliminary evidence of validity and reliability supports its use in the general adult population.

A Comparison of Family Management Between Families of Children With Autism Spectrum Disorder and Families of Children With Down Syndrome.

INTRODUCTION: This cross-sectional study aimed to (1) compare family management between families of children with autism spectrum disorder (ASD) or Down syndrome and (2) evaluate the contribution of the child (ASD behaviors, feeding difficulties, sleep disturbances), caregiver (mental health) and family (social support) factors to the caregiver's perceived condition management ability and effort. METHOD: Eighty-five caregivers (56 ASD, 29 Down syndrome) completed quantitative instruments online. Data analysis included independent samples t-tests and multiple linear regression. RESULTS: There were no significant differences in the dimensions of family management between groups. More ASD behaviors were associated with lower condition management ability and higher condition management effort. Lower perceived social support and higher caregiver age were associated with lower condition management ability. DISCUSSION: Integrating care into family life may be more challenging when the child has more social differences and behavioral rigidity. Nursing care should include an assessment of family social support.

Social determinants of health at multiple socio-ecological levels and sleep health in adolescents: A scoping review.

Heightened sleep disturbances occur in adolescence, yet existing research has predominantly focused on individual factors linked to poor sleep and a limited set of sleep outcomes, such as sleep duration and timing. This scoping review aimed to identify the multilevel social determinants of adolescent sleep health across domains, including regularity, satisfaction/quality, alertness/sleepiness, timing, efficiency/continuity, duration, and behavior. Social determinants of health (SDoH) were categorized through a socio-ecological lens, while sleep health domains were aligned with the RU-SATED and Peds B-SATED sleep health frameworks. A systematic database search resulted in 57 studies of non-clinical adolescent and young adult populations (age 10-24 y) in North America, published between 2014 and 2022. Research gaps include 1) absence of other sleep health domains other than duration which is predicated on the included studies using a limited set of sleep outcome measures rather than a more comprehensive measurement strategy that align with the multifaceted domains of sleep health, and 2) inconsistent terminology and/or absent conceptual and operational definitions of subjective sleep reports. The findings highlight the multilevel SDoH that influence adolescent sleep health, underscoring the need for more comprehensive research. Such efforts will facilitate the development of interventions focused on fostering optimal adolescent sleep health this populations.

Patterns of self-care decision-making and associated factors: A cross-sectional observational study.

OBJECTIVE: The aim of this study was to identify for the first time patterns of self-care decision-making (i.e. the extent to which participants viewed contextual factors influencing decisions about symptoms) and associated factors among community-dwelling adults with chronic illness. METHODS: This was a secondary analysis of data collected during the development and psychometric evaluation of the 27-item Self-Care Decisions Inventory that is based on Naturalistic Decision-Making (n = 430, average age = 54.9 ±â€¯16.2 years, 70.2 % female, 87.0 % Caucasian, average number of chronic conditions = 3.6 ±â€¯2.8). Latent class mixture modeling was used to identify patterns among contextual factors that influence self-care decision-making under the domains of external, urgency, uncertainty, cognitive/affective, waiting/cue competition, and concealment. Multivariate multinomial regression was used to identify additional socio-demographic, clinical, and self-care behavior factors that were different across the patterns of self-care decision-making. RESULTS: Three patterns of self-care decision-making were identified in a cohort of 430 adults. A 'maintainers' pattern (48.1 %) consisted of adults with limited contextual influences on self-care decision-making except for urgency. A 'highly uncertain' pattern (23.0 %) consisted of adults whose self-care decision-making was largely driven by uncertainty about the cause or meaning of the symptom. A 'distressed concealers' pattern (28.8 %) consisted of adults whose self-care decision-making was highly influenced by external factors, cognitive/affective factors and concealment. Age, education, financial security and specific symptoms were significantly different across the three patterns in multivariate models. CONCLUSION: Adults living with chronic illness vary in the extent to which contextual factors influence decisions they make about symptoms, and would therefore benefit from different interventions.

Symptom characteristics, perceived causal attributions, and contextual factors influencing self-care behaviors: An ecological daily assessment study of adults with chronic illness.

OBJECTIVE: Insights into how symptoms influence self-care can guide patient education and improve symptom control. This study examined symptom characteristics, causal attributions, and contextual factors influencing self-care of adults with arthritis, asthma, chronic obstructive pulmonary disease, diabetes, or heart failure. METHODS: Adults (n = 81) with a symptomatic chronic illness participated in a longitudinal observational study. Using Ecological Daily Assessment, participants described one symptom twice daily for two weeks, rating its frequency, severity, bothersomeness, duration, causes, and self-care. RESULTS: The most frequent symptoms were fatigue and shortness of breath. Pain, fatigue, and joint stiffness were the most severe and bothersome. Most participants engaged in active self-care, but those with fatigue and pain engaged in passive self-care (i.e., rest or do nothing), especially when symptoms were infrequent, mild, somewhat bothersome, and fleeting. In people using passive self-care, thoughts, feelings, and the desire to conceal symptoms from others interfered with self-care. CONCLUSION: Most adults with a chronic illness take an active role in managing their symptoms but some conceal or ignore symptoms until the frequency, severity, bothersomeness, or duration increases. PRACTICE IMPLICATIONS: When patients report symptoms, asking about self-care behaviors may reveal inaction or ineffective approaches. A discussion of active self-care options may improve symptom control.

Lessons learned from the MOMENT study on how to recruit and retain a target population online, across borders, and with automated remote data collection.

Increasingly, studies use social media to recruit, enroll, and collect data from participants. This introduces a threat to data integrity: efforts to produce fraudulent data to receive participant compensation, e.g., gift cards. MOMENT is an online symptom-monitoring and self-care study that implemented safeguards to protect data integrity. Facebook, Twitter, and patient organizations were used to recruit participants with chronic health conditions in four countries (USA, Italy, The Netherlands, Sweden). Links to the REDCap baseline survey were posted to social media accounts. The initial study launch, where participants completed the baseline survey and were automatically re-directed to the LifeData ecological momentary assessment app, was overwhelmed with fraudulent responses. In response, safeguards (e.g., reCAPTCHA, attention checks) were implemented and baseline data was manually inspected prior to LifeData enrollment. The initial launch resulted in 411 responses in 48 hours, 265 of which (64.5%) successfully registered for the LifeData app and were considered enrolled. Ninety-nine percent of these were determined to be fraudulent. Following implementation of safeguards, the re-launch yielded 147 completed baselines in 3.5 months. Eighteen cases (12.2%) were found fraudulent and not invited to enroll. Most fraudulent cases in the re-launch (15 of 18) were identified by a single attention check question. In total, 96.1% of fraudulent responses were to the USA-based survey. Data integrity safeguards are necessary for research studies that recruit online and should be reported in manuscripts. Three safeguard strategies were effective in preventing and removing most of the fraudulent data in the MOMENT study. Additional strategies were also used and may be necessary in other contexts.

Correlates of Feeding Difficulties Among Children with Autism Spectrum Disorder: A Systematic Review.

Feeding difficulties related to selective intake, or eating a limited variety of foods, are very common in children with autism spectrum disorder (ASD). A systematic search of PubMed, Embase, PsycInfo, and CINAHL identified 29 studies that evaluated eight correlates: age, ASD symptoms and severity, cognitive and adaptive skills, sensory processing and perception, challenging behavior, weight status, gastrointestinal symptoms, and parenting stress. Feeding difficulties related to selective intake are consistently correlated with impaired sensory processing and perception and tend to be positively associated with rigidity and challenging behavior. These feeding difficulties tend to persist with advancing age. Other correlates demonstrated inconsistent findings. A significant limitation of research reviewed is variability in terminology, definitions, and measurement of feeding difficulties.

Self-care management of bothersome symptoms as recommended by clinicians for patients with a chronic condition: A Delphi study.

BACKGROUND: Chronically medically ill patients often need clinical assistance with symptom management, as well as self-care interventions that can help to reduce the impact of bothersome symptoms. Experienced clinicians can help to guide the development of more effective self-care interventions. OBJECTIVE: To create a consensus-based list of common bothersome symptoms of chronic conditions and of self-care management behaviors recommended to patients by clinicians to reduce the impact of these symptoms. METHODS: A two-round Delphi study was performed among an international panel of 47 clinicians using online surveys to identify common and bothersome symptoms and related self-care management behaviors recommended to patients with heart failure, chronic obstructive pulmonary disease, asthma, type 2 diabetes, or arthritis. RESULTS: A total of 30 common bothersome symptoms and 158 self-care management behaviors across the five conditions were listed. Each chronic condition has its own bothersome symptoms and self-care management behaviors. Consensus was reached on the vast majority of recommended behaviors. CONCLUSIONS: The list of common bothersome symptoms and self-care management behaviors reflect consensus across four countries on many points but also disagreement on others, and a few recommendations are inconsistent with current guidelines. Efforts to encourage clinicians to recommend effective self-care management behaviors may reduce symptom impact in chronically ill patient populations.

Using mixed methods in cardiovascular nursing research: Answering the why, the how, and the what's next.

Mixed methods is an innovative research approach that can be applied to understand complex cardiovascular phenomena. A mixed methods study involves collecting both quantitative and qualitative data and intentionally integrating the data to provide a better understanding of the phenomena than can be achieved by using a quantitative or qualitative approach alone. Conducting a mixed methods study requires planning and careful attention to methodological rigour in the data collection, analysis, and integration phases. This paper provides an overview of the mixed methods approach and describes its application to cardiovascular nursing science.