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The Self- and Family Management Framework has structured quantitative studies.
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Quantitative studies have focused more on patients than family caregivers.
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Independent and dependent variables have represented all Framework components.
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Racial and/or ethnic minority representation has been limited among study participants.
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Policymakers should consider patients and family independently and as co-managers.
Abstract
Background
The Self- and Family Management Framework (SFMF) identifies factors and outcomes of patient and family management of chronic illness. In a previous citation analysis, we reported the frequency and nature of use of the SFMF.
Purpose
We conducted a sub-analysis of quantitative articles in the citation analysis to examine testing of relationships depicted in the SFMF.
Methods
We analyzed study purposes, independent and dependent variables, study implications, and text that referred to the SFMF in 40 articles.
Findings
The SFMF has been used largely to explore factors affecting SFM behaviors, focusing on patient versus family self-management. Independent variables included all categories of facilitators/barriers specified in the SFMF. Dependent variables included all SFMF components (Facilitators/Barriers, Processes, Proximal and Distal Outcomes). Racial/ethnic diversity was limited among study participants. Study implications pertained mostly to psychosocial outcomes. Most studies referred to the SFMF generally.
). Improving self- and family management (SFM) behaviors is one intervention used by health professionals to engage individuals and their families in chronic condition management (
). Extensive research supports SFM interventions for patients and their families to participate in chronic health condition management as individuals or as dyads (
) by identifying themes from the SFM literature that were relevant to individual and family responses across chronic health conditions, as well as by identifying factors influencing self-management and potential outcomes of enhanced management of these conditions. As the evidence base for SFM has evolved, we adapted the SFMF to reflect the complexities of SFM science, including expanded identification of facilitators and barriers to self-management, processes of self-management, and moderators and mediators of individual and family outcomes (
). We found that the SFMF has been used broadly across diverse populations, chronic health conditions, and settings and for varying research purposes (
). An examination of quantitative studies is needed to better understand how the SFMF has been used, identify knowledge gaps, and guide future revisions. Thus, our purpose was to conduct a sub-analysis of quantitative studies included in the previous citation analysis (
) to determine the impact of the SFMF as measured by citation frequency (Hack et al., 2010; Nightingale & Marshall, 2012) and use (e.g., type of study, population). The two articles that describe the framework and on which we based the citation analysis were:
Grey, M., Knafl, K., & McCorkle, R. (2006). A framework for the study of self- and family management of chronic conditions. Nursing Outlook, 54(5), 278-286.
). Briefly, an expert medical librarian [JB] retrieved studies that cited the two foundational articles using the “cited by” feature in Scopus, Web of Science, and GoogleScholar on November 7, 2019. We retrieved 634 citing articles, which we uploaded into EndNote X9 (Clarivate, Philadelphia, PA). After removing duplicates, we retrieved the full text of each article, and removed citations of book chapters, non-English language articles, and articles for which we could not locate the full text, bringing the number of articles included in the final synthesis to 126. We used a data extraction form to capture characteristics of each citing article, including the study design.
Identification of Articles for Sub-Analysis
We used Covidence to screen the quantitative articles identified in the original citation analysis. We excluded studies that did not focus on SFM variables and relationships (e.g., those on instrument development, trial protocols) or that did not pertain to patients and family caregivers. The original data extraction form included study design, SFMF version used, country in which the study took place, study purpose, health condition studied, participant characteristics, and all text that referred to the SFMF. For this sub-analysis, we created a modified data extraction form to add to the original data collected on each article with columns on study hypotheses, independent and dependent variables, and study implications.
Data Analysis
We analyzed the data using descriptive statistics and used qualitative content analysis (
) to categorize study purposes and implications. We categorized independent and dependent variables of studies according to components of the most recent version of the SFMF (e.g., Facilitators and/or Barriers, Processes, Proximal Outcomes, Distal Outcomes). Study authors did not always explicitly state to which component of the SFMF their variables belonged. In these cases, we identified the presumed fit and labeled any variables that were incompatible with components of the SFMF as “outliers,” to be considered during the next revision of the SFMF.
As a reliability check, two new coders reviewed the text extracted from articles that referenced the SFMF and re-rated the extent of use of the SFMF on the same 1-3 scale used previously (1=low, 2=moderate, 3=extensive). Low level integration was characterized by citation of the SFMF with little to no description of the framework. Moderate level integration was characterized by a brief description of the SFMF but lacked detail on how the study was guided by the framework. Extensive integration showed comprehensive use of the SFMF to guide the study, including specific hypothesis and/or variables aligned with the SFMF.
Findings
Description of Sample Articles
Figure 2 depicts the PRISMA flow chart for the sub-analysis
We describe individual articles in the sample (n = 40) in Table 1 and provide an aggregate sample description in Table 2. Twenty-eight articles cited the 2006 framework (70%) and twelve cited the 2015 framework (30%). The sample was comprised of 14 quantitative study designs with most being cross-sectional (n = 11, 27.5%). Studies occurred in ten different countries and included participants managing a variety of health conditions. The three most common diseases are were cancer (n = 6, 15%), heart failure (n = 6, 15%), and type 2 diabetes (n = 5, 12.5%). Data analyzed for each article appears in Table 3.
Affinito, J., & Louie, K. (2018). Positive coping and selfassessed levels of health and burden in unpaid caregivers of patients with end stage renal disease receiving hemodialysis therapy. Nephrology Nursing Journal, 45(4), 9.
Positive coping and self-assessed levels of health and burden in unpaid caregivers of patients with end stage renal disease receiving hemodialysis therapy
An evaluation of involving family caregivers in the self-care of heart failure patients on hospital readmission: Randomised controlled trial (the FAMILY study).
An evaluation of involving family caregivers in the self-care of heart failure patients on hospital readmission: Randomised controlled trial (the FAMILY study)
The effect of self-management education on the quality of life and severity of the disease in patients with severe psoriasis: A non-randomized clinical trial.
The effect of self-management education on the quality of life and severity of the disease in patients with severe psoriasis: A non-randomized clinical trial
Keough, L., Sullivan-Bolyai, S., Crawford, S., Schilling, L., & Dixon, J. (2011). Self-management of type 1 diabetes across adolescence. The Diabetes Educator, 37(4), 486–500. https://doi.org/10.1177/0145721711406140.
Testing the utility of a bio-neuropsychosocial model for predicting medical adherence and responsibility during early adolescence in youth with spina bifida.
Testing the utility of a bio-neuropsychosocial model for predicting medical adherence and responsibility during early adolescence in youth with spina bifida
Adherence to self-monitoring of blood glucose in Chinese patients with type 2 diabetes: Current status and influential factors based on electronic questionnaires.
Adherence to self-monitoring of blood glucose in Chinese patients with type 2 diabetes: current status and influential factors based on electronic questionnaires
Table 2Sample Description of Articles Citing the Self- and Family Management Framework (n=40 Articles)
Characteristic
n
%
Version of Self- and Family Management Framework cited 2006 2015 Citations by time period (both versions)
28 12
70 30
2006–2010
4
10
2011–2015
12
30
2016–2019
24
60
Type of quantitative study Cross-sectional Secondary data analysis Randomized controlled trial Mixed methods- quantitative arm Cohort study Descriptive correlational Quasi-experimental Pilot study Non-randomized clinical trial Quality improvement comparison Design Observational Survey Descriptive Prospective longitudinal
Affinito, J., & Louie, K. (2018). Positive coping and selfassessed levels of health and burden in unpaid caregivers of patients with end stage renal disease receiving hemodialysis therapy. Nephrology Nursing Journal, 45(4), 9.
Positive coping and self-assessed levels of health and burden in unpaid caregivers of patients with end stage renal disease receiving hemodialysis therapy
The purpose of this study was to explore the association of burden in relation to the positive aspects and self-assessed levels of health experienced by caregivers of patients on hemodialysis.
Perception of benefits within the caregiving context; self-assessed health
Caregiver stress and burden
Caregiver burden and self-assessed health; caregivers of hemodialysis patients, care recipient and caregiver as a dyad, health care providers, interdisciplinary health care providers, clinicians
Cognition and adherence are self-management factors predicting the quality of life of adults living with a left ventricular assist device
In this study we aimed to close this knowledge gap by exploring the influence of SM factors3 (cognitive function—general and executive function, LVAD self-efficacy, care dependency and adherence) on the QOL of adults living with an implantable LVAD. Specific aims were to:(1) differentiate the SM factors and overall QOL based on LVAD implant durations (r12, 13to24and Z25 months); (2) examine the relationships among SM factors and QOL; and (3) identify SM factors that predict QOL.
Patients’ perception of their cognitive abilities; patient's knowledge and confidence about LVAD care; patient adherence to LVAD care regimen; patient's caregivers dependency
Physical, psychological, social and environmental domains of QOL
LVAD patients; LVAD self- efficacy, adherence, cognitive function, overall QoL
A structural equation model of patient–health care provider relationships and HIV-infected patient outcomes in Chinese populations
However, there remains a shortage of empirical studies in HIV/AIDS care that seek to integrate multiple pathway factors and simultaneously test their effects in relation to patient-HCP interactions and patient outcomes. To fill the gap in the literature and to provide insights on potential mechanisms, this study aims to link the patient-HCP interactions to clinically meaningful outcomes through selected psychological and behavioral factors
Demographics; patient- HCP relationships; HIV self-efficacy; medication-taking barriers
Adherence; CD4
People living with HIV/AIDS; adherence, self-efficacy, patient-HCP relationship
Quality of life in HIV-infected Chinese women and their family caregivers: an intervention study
In this study, we describe the development and preliminary evaluation of an intervention tailored for Chinese HIV-infected women and caregivers to improve their self- and family management, with goals of enhancing their physical quality of life (QOL) and decreasing their depressive symptomatology.
NA
Dyad's physical conditions and whether they could participate in activities as they wished; depressive symptoms
Nurses in China, training nurses; psychological needs; HIV-infected women, HIV-infected patients
Glucose and cardiac risk factor control in individuals with Type 2 diabetes
The purpose of this descriptive study was to describe attainment of glucose and coronary heart disease (CHD) risk factor goals and to identify factors that were associated with successful goal achievement.
Sociodemographic data; knowledge of diabetes and CHD risk factors; personal model beliefs; anxiety; anger; hostility; depressive symptom; family support; medications/treatments using; duration of diabetes; physical activity
Quality of life among youth with poorly controlled Type 1 diabetes: role of family conflict and sharing of treatment responsibility
Aims: In addition to maintaining metabolic goals, treatment for youth with Type 1 diabetes mellitus emphasizes the importance of fostering a good quality of life (QoL). This study examines the roles of diabetes-specific family conflict and family sharing of treatment responsibility on the QoL of youth with poor metabolic control.
Responsibility for treatment-related tasks; family conflict; T1DM adherence; stress; blood sugar
Diabetes physical, psychological and social effects
Youth with T1DM and family members; health-family sharing of treatment responsibility, family conflict, Youth QoL; medical providers
An evaluation of involving family caregivers in the self-care of heart failure patients on hospital readmission: Randomised controlled trial (the FAMILY study).
An evaluation of involving family caregivers in the self-care of heart failure patients on hospital readmission: Randomized controlled trial (the FAMILY study)
The purpose of the study was to evaluate the effectiveness of the Family focused Approach to improve Heart Failure care In Lebanon Quality intervention (FAMILY) study on patient outcomes. The primary aim of this study was to evaluate the effectiveness of this tailored heart failure disease management intervention on hospital readmission. Secondary aims were to evaluate its effectiveness on self-care, quality of life, and health care utilization.
NA
Hospital readmission rate; health care utilization; weight; self-care; quality of life; sociodemographic data; social history- smoking history, alcohol consumption and yearly flu vaccination; clinical data; hospitalization history, NYHA class, ejection fraction, discharge medication; frailty
Patients with heart failure and family; readmission, health care utilization, major vascular events; health-self-care maintenance and confidence; generalizable to collectivist culture
Identifying risk factors and protective factors for venous leg ulcer recurrence using a theoretical approach: A longitudinal study
Objectives: This study aimed to identify risk and protective factors for recurrence of venous leg ulcers using a theoretical approach by applying a framework of self and family management of chronic conditions to underpin the study.
Demographic data; height and weight; physical activity; co-morbidities; venous history and ulcer characteristics; follow-up health service use; venous ulcer self-care and management regimen; depression; self-efficacy; social network/support
Ulcer recurrence rate and characteristics
Venous leg ulcers, younger adults; venous ulcer recurrence; self-care regimens and, lifestyle modifications and self-efficacy
Problem-solving intervention for caregivers of children with mental health problems
The purpose of this study was to determine the feasibility, acceptability, and preliminary estimates of effect sizes for the BOSC intervention when compared to a wait list control (WLC) group.
NA
Child behavior problem; personal control; problem-solving attitudes and skills; depressive symptoms; burden/stress
Children with mental health problems; providers; caregiver burden and depression
The effect of self-management education on the quality of life and severity of the disease in patients with severe psoriasis: A non-randomized clinical trial.
The effect of self-management education on the quality of life and severity of the disease in patients with severe psoriasis: A non-randomized clinical trial
Aim: This study aimed to investigate the effect of the self-management education on the QOL and the severity of the disease in patients with psoriasis
NA
Quality of life; severity of Psoriasis
Patients with psoriasis, nurses, nursing staff, nurse manager; QOL; severity of psoriasis
Knowledge of Cancer Stage among Women with Nonmetastatic Breast Cancer
To understand better the relationship between knowledge of cancer stage and self-management, we aimed to (1) explore knowledge of cancer stage among women with non-metastatic breast cancer, (2) examine the influence of demographic and clinical characteristics on women's knowledge of their stage, and (3) examine the relationship between knowledge of cancer stage and self-management.
Demographic data; clinical characteristic
Breast cancer stage
Breast cancer, clinicians, oncologists, cancer patients and their family caregivers, women with stage 0 and stage IV breast cancer; correct identification of cancer stage
2
Hu et al., 2018
Physical activity of Chinese American immigrants with type 2 diabetes/prediabetes: A mixed method study
Given the high prevalence of type 2 diabetes/prediabetes among Chinese Americans and the need for their engagement in PA, the purpose of this study was to investigate the type and intensity level of PA, PA information resources, and barriers to exercise among Chinese American immigrants with type 2 diabetes/prediabetes.
NA
Physical activity
Chinese immigrants with type 2 diabetes/prediabetes, providers, nurses, health care providers; physical activity; assimilated but ongoing challenges and insufficient information
Keough, L., Sullivan-Bolyai, S., Crawford, S., Schilling, L., & Dixon, J. (2011). Self-management of type 1 diabetes across adolescence. The Diabetes Educator, 37(4), 486–500. https://doi.org/10.1177/0145721711406140.
Self-management of type 1 diabetes across adolescence
The purpose of this study was to examine differences in self-management behaviors (Collaboration with Parents, Diabetes Care Activities, Diabetes Problem Solving, Diabetes Communication, and Goals) between early, middle, and late adolescence. The role of regimen and gender as covariates in self-management behaviors was also examined.
Adolescence stage; gender; regimen
Adolescence collaboration with parents, diabetes care activities, diabetes problem solving, diabetes communication and goals
Youth with T1D and their families, parents, clinicians, males; metabolic control; SM behaviors
CommunityRx: A Real-World Controlled Clinical Trial of a Scalable, Low-Intensity Community Resource Referral Intervention
Objectives. To test the effect of CommunityRx, a scalable, low-intensity intervention that matches patients to community resources, on mental health-related quality of life (HRQOL) (primary outcome), physical HRQOL, and confidence in finding resources.
Demographic characteristics
Mental HRQO; physical HRQOL; confidence in finding resources; community resource use attributable to usual care
Public health and health care professionals, middle-aged and older adults with a high burden of disease; mental or physical HRQOL
Self-management of chemotherapy-related nausea and vomiting: A cross-sectional survey of Chinese cancer patients
The purpose of the study reported here was to examine Chinese cancer patients’ nausea and vomiting SM (NVSM). Specifically, the objectives of the study were to describe the types of behaviors used by patients, patients’ reports of their confidence in using these behaviors, and their reports of the degree of relief they provided. Moreover, the study sought to identify health, individual, and environmental factors that influenced patients’ engagement with NVSM and the reported relief level
Occurrence, severity, and duration of chemotherapy-induced nausea and vomiting; distress; resources patients perceives are available; demographic data; chemotherapy data; cancer type/stage; performance
Nausea/vomiting self-management behavior, dietary modification, environmental modification, psychological strategies, and traditional Chinese treatment
Chinese cancer patients, patients receiving chemotherapy, health professionals, nurses in China
Fatigue self-management: a survey of Chinese cancer patients undergoing chemotherapy
The overall purpose of this study was to investigate Chinese cancer patients’ SM behaviors in response to fatigue, nausea and vomiting. Findings relating to patients’ self-management of nausea and vomiting will be reported elsewhere. The purpose of this study is to examine Chinese cancer patients’ FSM, including the types of behaviors used by patients, patients’ reports of their confidence in using these behaviors and their reports of the degree of relief they provide. This study also reports the factors associated with different aspects of FSM, including the number of FSM behaviors used and the engagement in and relief from certain categories of FSM behaviors.
Fatigue; distress; patients’ perceptions of the support available; demographic data; chemotherapy data; cancer type and stage; functional status
Use of fatigue self-management behaviors, the level of relief obtained and the self-efficacy level associated with the specific behavior
Chinese patients, nurses, patients with cancer; fatigue; development of culturally appropriate FSM interventions, TCM use with caution
Self‐management support for chronic pain in primary care: a cross‐sectional study of patient experiences and nursing roles
The purpose of this paper was to describe self-management of chronic pain from the perspective of the individual with chronic pain and nurses who provide support for self-management in primary care in Ontario, Canada. Data from two previous studies were used to describe: (1) self-management actions, barriers and facilitators of community-dwelling adults living with chronic pain; (2) the roles and activities of primary care nurses in chronic disease management; (3) resources for chronic disease and pain management in primary care organizations; and (4) barriers and facilitators of primary care nursing role optimization.
NA
Patients: frequency/intensity of chronic pain; sociodemographic and general health characteristics; number of chronic conditions; smoking status; type of health care professional felt to be most helpful in supportive self-management; prescriptions/treatments; barriers/ facilitators of self-management Nurses: sociodemographic characteristics; nursing experience/education/practices
Canada; health care providers, organizations, health care providers and individuals with chronic pain, registered /practical nurses and other health care providers, physicians; chronic pain
What Are the Barriers and Facilitators for the Self-Management of Chronic Pain with and without Neuropathic Characteristics?
Thus, the purpose of this study was to identify barriers and facilitators of self-management for individuals with CPNC. The study objectives were as follows: (1) to explore whether barriers and facilitators identified in the literature reflect the current experience of individuals with chronic pain, and (2) to describe and compare barriers and facilitators of self-management in individuals with CP and CPNC.
Symptoms of neuropathic pain
Sociodemographic characteristics; diagnoses; self-efficacy; depression; social/family support and relationship with health care provider; pain intensity; barriers/facilitators to pain management
Individuals with CPNC, nurses, health care providers, adult population, individuals with chronic pain; severe pain intensity; depression, low self-efficacy, family/friend and health care provider relationships
Self-management and family support in chronic diseases
Objective: The purpose was to evaluate the behavior of self-management in people with: diabetes, hypertension and cancer, and to analyze the relationship between self-management and family support.
NA
Family support; self-management, adherence to treatment, knowledge of the disease, managing side effects, and managing signs and symptoms
Family dysfunction; adults and older adults with chronic illnesses; Mexican population; patients and caregivers; HCP
Daily routine: Associations with health status and urgent health care utilization among older adults
The objectives of this study were to examine associations between the presence of a daily routine and older adults’ health status and urgent health care utilization and determine whether a higher level of daily routine mediates associations between SEP and health outcomes.
Daily routine; sociodemographic characteristics; number of chronic conditions
Physical functional health status; depressive symptoms; anxiety; urgent health care utilization
Improved physical and mental wellbeing; older adults; allied health professionals and caregivers
Pilot randomized trial of a family management efficacy intervention for caregivers of African American adolescents with disruptive behaviors
Objective: To examine feasibility/acceptability of Family Management Efficacy (FAME) intervention content, structure, delivery, and appropriateness of selected measures for caregivers of African American adolescents with ODD/CD. Secondary aim was to explore changes in FAME caregivers’ interaction self-efficacy, stress, quality of life, and family functioning scores relative to caregivers receiving treatment as usual (TAU).
NA
Caregiver self-efficacy; caregivers’ problem-solving strengths; caregiver stress; caregivers’ quality of life; family cohesion, flexibility, and communication; caregiver's perceived life difficulty in managing the care; caregivers’ social network
Improved family cohesion, communication, quality of life, and social network density; lower observed self-efficacy and problem solving; children and their caregivers
Testing the utility of a bio-neuropsychosocial model for predicting medical adherence and responsibility during early adolescence in youth with spina bifida.
Testing the utility of a bio-neuropsychosocial model for predicting medical adherence and responsibility during early adolescence in youth with spina bifida
The purpose of the study was to evaluate the predictive utility of four different domains of functioning on catheterization and bowel program responsibility and adherence among young adolescents with SB: (1) biological, (2) neuropsychological, (3) family, and (4) peer. We focused on adherence and responsibility with catheterization and bowel programs only, as these tasks are prominent components of SB medical care, and nonadherence to these tasks is associated with common but preventable secondary complications.
Primary responsibility for health care appointments, communication about SB, medications, general needs and self-care, ambulation, skin care, catheterization, bowel management, exercise, and diet; adherence to SB medical treatments
Lesion level and number of shunt revisions; child's gross motor classification; intellectual functioning; child executive dysfunction; parents-adolescent conflict; parents’ perceptions of family cohesion; intensity of common stressors in families with a child with a chronic health condition; youth's rating of best friend qualities; closeness/support with close friend; peer conflict
Executive dysfunction; child responsibility; adolescents with SB and their caregivers
Veterans' decision-making preferences and perceived involvement in care, for chronic heart failure
OBJECTIVES: We assessed patients’ preferred role and perceived level of involvement in medical decision making and tested the effects of patients’ age and role preference on perceived involvement in medical decision making.
Age; patients' preferred role in decision making
Patients’ involvement in medical decision
Patients’ preference for passive role in decision; older adults with heart failure; medical providers
Predictors of family management behavior for children with thalassemia
The purpose of this study was to examine predictors of family care behavior by family caregivers of children with thalassemia.
Sociodemographic data; perspectives of caregivers regarding managing a child with a chronic illness; adherence to blood transfusions, medication, exercise, and diet; family caregiver knowledge of thalassemia, medication and treatment regimens
Family management behavior
Improved family management behavior; Caregivers of children with thalassemia.
Family management affecting transition readiness and quality of life of Chinese children and young people with chronic diseases
This study aimed to explore the relationships between FM, self-management and transition readiness, and quality of life (QoL), and identify the potential CYP or family factors influencing the relationships.
Demographics; ease/difficulty of family management; self-management and transition readiness
Family management; self-management; transition readiness; QOL
Self-management and transition readiness and QoL; Children with chronic diseases and their caregivers; clinicians/researchers
Effectiveness of family involvement in newly diagnosed type 2 diabetes patients: a follow-up study
Objective: To investigate the effects of family-involvement on health education for T2DM from the aspects of knowledge, attitude and practice (KAP), health-related quality of life (HRQoL), body mass index (BMI) and glucose control.
NA
HbA1c levels; BMI; knowledge, attitudes, and practice; health-related quality of life
Diabetes self-management; family management; children with diabetes and their caregivers; clinicians/
A Multimedia Self-Management Intervention to Prepare Cancer Patients and Family Caregivers for Lung Surgery and Postoperative Recovery
The purpose of this pilot study was to evaluate the feasibility and acceptability of a multimedia self-management (MSM) intervention to prepare patients and family caregivers for lung surgery.
NA
Patient QOL; symptoms, severity, and impact on daily functioning; self-efficacy; patient and family caregiver knowledge; patient's level of engagement and empowerment in their health care; clinical, surgical, and health care resource use; family caregiver QOL; caregiver burden
Improved emotional QOL, self-efficacy, activation, and knowledge; Adults with lung cancer
Impact of a health educational guidelines on the knowledge, self-management practice and self-efficacy of patients with type-2 diabetes
Aim: To evaluate the impact of a health education intervention guidelines for T2DM on Patients’ knowledge, self-efficacy, and self-management practices.
NA
Patients’ knowledge of diabetes; self-efficacy; self-management behaviors
Patients’ knowledge; self-management; self-efficacy; educational level; knowledge; adults with diabetes and their family caregivers; clinicians/researchers
Family function in cognitively normal children with epilepsy: Impact on competence and problem behaviors
The primary goal of this study was to measure family function in children with epilepsy and identify neurological correlates of family dysfunction, and to identify factors that may be important in predicting families at risk of dysfunction. Our secondary goal was to determine whether and to what degree family dysfunction is associated with emotional and behavioral difficulties in children with epilepsy and whether this risk generalizes to nonepileptic siblings. To do so, we analyzed the relationship between family dysfunction and emotional/behavioral difficulties in children with epilepsy and in siblings using a general measure of psychopathology, the Child Behavior Checklist (CBCL)
Epilepsy clinical variables; family functioning
Family function; emotional/ behavioral functioning
Family function; behavior problems; children with epilepsy and their siblings and caregivers; researchers; HCPs
Examining the interrelatedness of patient and spousal stress in heart failure: Conceptual model and pilot data
Our goals were 2-fold: (a) to propose a conceptual framework to examine the reciprocity between patient and spouses’ well-being, especially as it relates to disease management, and (b) to begin to assess the validity of this model using pilot data.
NA
NA
Depressive symptoms; social support structure; dyadic adjustment; confidence in self-management; adults with heart failure; dyads; researchers; HCPs
A Couples' Based Self-Management Program for Heart Failure: Results of a Feasibility Study
The purpose of this program is to improve communication between HF patients and their significant others and improve self-management. Secondary goals include alleviating stress and improving quality of life for patients and their significant others. In this manuscript, we describe the process that we used to develop the program and report the results of a pilot study designed to determine program acceptability among target participants.
NA
Quality of life; depressive symptoms; coping and relationship quality; reciprocity in the relationship; communication within the couple about chronic condition; HF quality of life; self-management of HF
Coping for patients; worsened quality of life; worsening disease; adults with heart failure and partners; couples
Self-care behavior in patients with heart failure in Taiwan
Therefore, the purpose of this study is to describe the self-care behavior and associated demographic factors affecting such behavior in this population in Taiwan.
Sociodemographic data; family support, comorbidities; treatment plan, medications, and associated clinical data
Self-care behaviors
Self-care confidence; self-care maintenance; adults with heart failure; clinicians; multidisciplinary team
Self-efficacy for seizure management and youth depressive symptoms: Caregiver and youth perspectives
The aims of this study were to (1) compare caregiver and youth measures of self-efficacy for seizure management (SESM), as well as report of depressive symptoms and suicidal ideation in youth with epilepsy (YWE) and (2) examine the potential relationship between caregiver SESM and caregiver report of depressive symptoms in YWE.
Efficacy in the self-management of epilepsy; parent's measure of youth emotional/ behavioral functioning
Self-efficacy; depressive symptoms; parents’ report of efficacy in managing their child's seizures; youth emotional and behavioral functioning; caregiver reported depressive symptoms in youth
Suicidal ideation; depressive symptomatology; caregivers’ self-efficacy; children with epilepsy and their caregivers; researchers
Adherence to self-monitoring of blood glucose in Chinese patients with type 2 diabetes: Current status and influential factors based on electronic questionnaires.
Adherence to self-monitoring of blood glucose in Chinese patients with type 2 diabetes: current status and influential factors based on electronic questionnaires
Therefore, using electronic questionnaires, we aimed to explore the present status of SMBG adherence in China. Additionally, this study focused on the influential factors of SMBG based on demographic and clinical characteristics and psychological factors.
Demographic data; health-related information; treatment regimen; comorbidities; frequency of hospitalization and physician consultation in the last year; patients’ information-motivation-behavioral skills; depressive symptoms; self-efficacy; coping style; pain; BMI
Adherence for blood sugar monitoring
Adherence of SMBG; low awareness of self-management; adults with type 2 diabetes; health care workers
The impact of mental wellness on HIV self-management
Our purpose was to describe the relationship between HIV self-management and mental wellness (depressive symptoms and perceived stress). Additionally, as women often report lower levels of mental wellness and as there are potential differences in mental wellness between those with high and low ART adherence, we examined the relationship between HIV self-management and mental wellness separately in men and women and then in those who reported optimal medication adherence (≥ 90%) and suboptimal medication adherence (< 90%; Pence et al., 2015).
Demographic characteristics; medical data; current medications; self-reported HIV medication adherence; depressive symptoms; stress
HIV daily self-management health practices and social support
Social support; self-management; mental wellness; stress; adults with HIV; clinicians
Perceived Mood, Health, and Burden in Female Mexican American Family Cancer Caregivers
In this article we seek to describe quantitative measures of mood state, perceived health status, and burden in a sample of MA female family cancer caregivers. Additionally, we compare these findings with caregiver responses from qualitative interviews focused on the caregiving experience, the content of which is described full length in another article (Wells, Cagle, Bradley, & Barnes, 2008).
NA
Physical and mental health status outcomes from the caregiver's point of view; overall distress: tension, depression, anger, mental vigor, fatigue, and confusion; caregiver burden; acculturation- language use and preference at work, at home, with friends and in media, and preferred ethnicity of individuals in social relations
Caregiver poor mood and burden; female adults with cancer and family caregivers; Mexican American women; southern United States; HCPs; nurses
Opportunities and challenges in secondary stroke prevention: a mixed methods study
The purpose of this study was to describe risk factor control after a stroke, with a focus on BP, from the perspectives of the stroke survivor, the family, and health care professionals.
BP self-management
Medication adherence; demographics; beliefs/comfort related to using technology
Improved health care access; use of some form of health information technology; adult stroke survivors and families; clinicians
Engaging Overweight Adolescents in a Health and Fitness Program Using Wearable Activity Tracker
The objectives of this study were to (a) test the feasibility of a novel weight management intervention that would pool community and school resources using Internet-based activity tracking and online support; (b) measure participants’ receptivity using satisfaction surveys, level of attendance, and participation; and (c) determine whether any changes could be detected in health, fitness, weight, and healthy behavior assessment measurements over time.
NA
Sociodemographic data; medical conditions; BMI; Blood glucose level, blood pressure, and pulse measurements; strength and cardiovascular fitness; number of days the device was used, number of steps recorded, and average number of calories burned/consumed; cognitive and affective variables related to health behaviors; self-efficacy and self-determination for physical activity and healthy eating; behaviors related to viewing television, computer, or electronic video games
Improved health and fitness markers; overweight children and family caregivers; APRN; school nurses; researchers
Participants enrolled in the sample studies included patients (n = 24 studies), family caregivers (n = 4 studies) and patient-caregiver dyads (n = 11 studies), with one study including multiple participant types (patients and nurses). Twenty-one (52.5%) of the 40 studies included racially and ethnically underrepresented and/or international participants, whose participation varied across participant types. For example, among the 24 studies that included patient participants, eleven (46%) included racially and ethnically underrepresented or international participants. While nearly half of the studies (47.5%, n = 19) did not include data on these participants, we found that participation among these groups increased over time, with only one study including these participants between 2006 and 2010, five between 2011 and 2015, and fifteen between 2016 and 2019.
Study Purpose
We analyzed study purposes across the 40 articles. Some studies had multiple purposes which we coded into more than one category. The SFMF was used to: (1) explore facilitators/barriers affecting SFM behaviors (52.5%) (
Affinito, J., & Louie, K. (2018). Positive coping and selfassessed levels of health and burden in unpaid caregivers of patients with end stage renal disease receiving hemodialysis therapy. Nephrology Nursing Journal, 45(4), 9.
Keough, L., Sullivan-Bolyai, S., Crawford, S., Schilling, L., & Dixon, J. (2011). Self-management of type 1 diabetes across adolescence. The Diabetes Educator, 37(4), 486–500. https://doi.org/10.1177/0145721711406140.
Testing the utility of a bio-neuropsychosocial model for predicting medical adherence and responsibility during early adolescence in youth with spina bifida.
Adherence to self-monitoring of blood glucose in Chinese patients with type 2 diabetes: Current status and influential factors based on electronic questionnaires.
Keough, L., Sullivan-Bolyai, S., Crawford, S., Schilling, L., & Dixon, J. (2011). Self-management of type 1 diabetes across adolescence. The Diabetes Educator, 37(4), 486–500. https://doi.org/10.1177/0145721711406140.
Testing the utility of a bio-neuropsychosocial model for predicting medical adherence and responsibility during early adolescence in youth with spina bifida.
An evaluation of involving family caregivers in the self-care of heart failure patients on hospital readmission: Randomised controlled trial (the FAMILY study).
The effect of self-management education on the quality of life and severity of the disease in patients with severe psoriasis: A non-randomized clinical trial.
Study authors examined a wide range of independent variables under Facilitators and/or Barriers and Processes components of the SFMF (Supplemental Table S1). Under Facilitators and/or Barriers, study authors examined personal and lifestyle variables (e.g., physical activity) (
Affinito, J., & Louie, K. (2018). Positive coping and selfassessed levels of health and burden in unpaid caregivers of patients with end stage renal disease receiving hemodialysis therapy. Nephrology Nursing Journal, 45(4), 9.
Keough, L., Sullivan-Bolyai, S., Crawford, S., Schilling, L., & Dixon, J. (2011). Self-management of type 1 diabetes across adolescence. The Diabetes Educator, 37(4), 486–500. https://doi.org/10.1177/0145721711406140.
Adherence to self-monitoring of blood glucose in Chinese patients with type 2 diabetes: Current status and influential factors based on electronic questionnaires.
Adherence to self-monitoring of blood glucose in Chinese patients with type 2 diabetes: Current status and influential factors based on electronic questionnaires.
Adherence to self-monitoring of blood glucose in Chinese patients with type 2 diabetes: Current status and influential factors based on electronic questionnaires.
). Most of the independent variables studied were personal/lifestyle or health status factors. We classified independent variables that focused on illness needs (e.g., self-care) as Processes in the SFMF (
Testing the utility of a bio-neuropsychosocial model for predicting medical adherence and responsibility during early adolescence in youth with spina bifida.
An evaluation of involving family caregivers in the self-care of heart failure patients on hospital readmission: Randomised controlled trial (the FAMILY study).
The effect of self-management education on the quality of life and severity of the disease in patients with severe psoriasis: A non-randomized clinical trial.
An evaluation of involving family caregivers in the self-care of heart failure patients on hospital readmission: Randomised controlled trial (the FAMILY study).
Keough, L., Sullivan-Bolyai, S., Crawford, S., Schilling, L., & Dixon, J. (2011). Self-management of type 1 diabetes across adolescence. The Diabetes Educator, 37(4), 486–500. https://doi.org/10.1177/0145721711406140.
An evaluation of involving family caregivers in the self-care of heart failure patients on hospital readmission: Randomised controlled trial (the FAMILY study).
Adherence to self-monitoring of blood glucose in Chinese patients with type 2 diabetes: Current status and influential factors based on electronic questionnaires.
Affinito, J., & Louie, K. (2018). Positive coping and selfassessed levels of health and burden in unpaid caregivers of patients with end stage renal disease receiving hemodialysis therapy. Nephrology Nursing Journal, 45(4), 9.
An evaluation of involving family caregivers in the self-care of heart failure patients on hospital readmission: Randomised controlled trial (the FAMILY study).
Testing the utility of a bio-neuropsychosocial model for predicting medical adherence and responsibility during early adolescence in youth with spina bifida.
The effect of self-management education on the quality of life and severity of the disease in patients with severe psoriasis: A non-randomized clinical trial.
We further grouped proximal outcomes into behaviors (e.g., problem-solving), cognitions (e.g., self-efficacy), biomarkers (e.g., hemoglobin A1C), and symptom management (e.g., pain). We grouped distal outcomes into health status (e.g., physical and mental health), individual outcomes (e.g., patient's quality of life), family outcomes (e.g., caregiver's quality of life), and health care outcomes (e.g., readmission). Dependent variables were nearly evenly distributed across Facilitators/Barriers and Proximal and Distal Outcomes, with the exception of Processes, for which we identified fewer.
Study Implications
We grouped study implications into outcome, race and/or ethnicity, and population categories (Supplemental Table S3). We further grouped outcomes into physical (
Affinito, J., & Louie, K. (2018). Positive coping and selfassessed levels of health and burden in unpaid caregivers of patients with end stage renal disease receiving hemodialysis therapy. Nephrology Nursing Journal, 45(4), 9.
An evaluation of involving family caregivers in the self-care of heart failure patients on hospital readmission: Randomised controlled trial (the FAMILY study).
Keough, L., Sullivan-Bolyai, S., Crawford, S., Schilling, L., & Dixon, J. (2011). Self-management of type 1 diabetes across adolescence. The Diabetes Educator, 37(4), 486–500. https://doi.org/10.1177/0145721711406140.
The effect of self-management education on the quality of life and severity of the disease in patients with severe psoriasis: A non-randomized clinical trial.
Affinito, J., & Louie, K. (2018). Positive coping and selfassessed levels of health and burden in unpaid caregivers of patients with end stage renal disease receiving hemodialysis therapy. Nephrology Nursing Journal, 45(4), 9.
An evaluation of involving family caregivers in the self-care of heart failure patients on hospital readmission: Randomised controlled trial (the FAMILY study).
Keough, L., Sullivan-Bolyai, S., Crawford, S., Schilling, L., & Dixon, J. (2011). Self-management of type 1 diabetes across adolescence. The Diabetes Educator, 37(4), 486–500. https://doi.org/10.1177/0145721711406140.
Testing the utility of a bio-neuropsychosocial model for predicting medical adherence and responsibility during early adolescence in youth with spina bifida.
Adherence to self-monitoring of blood glucose in Chinese patients with type 2 diabetes: Current status and influential factors based on electronic questionnaires.
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Total exceeds 40 due to multiple participant groups within a study.
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