Trust in the Transplant Team Associated With the Level of Chronic Illness Management-A Secondary Data Analysis of the International BRIGHT Study.

A trustful relationship between transplant patients and their transplant team (interpersonal trust) is essential in order to achieve positive health outcomes and behaviors. We aimed to 1) explore variability of trust in transplant teams; 2) explore the association between the level of chronic illness management and trust; 3) investigate the relationship of trust on behavioral outcomes. A secondary data analysis of the BRIGHT study (ID: NCT01608477; https://clinicaltrials.gov/ct2/show/NCT01608477?id=NCT01608477&rank=1) was conducted, including multicenter data from 36 heart transplant centers from 11 countries across four different continents. A total of 1,397 heart transplant recipients and 100 clinicians were enrolled. Trust significantly varied among the transplant centers. Higher levels of chronic illness management were significantly associated with greater trust in the transplant team (patients: AOR= 1.85, 95% CI = 1.47-2.33, p < 0.001; clinicians: AOR = 1.35, 95% CI = 1.07-1.71, p = 0.012). Consultation time significantly moderated the relationship between chronic illness management levels and trust only when clinicians spent ≥30 min with patients. Trust was significantly associated with better diet adherence (OR = 1.34, 95%CI = 1.01-1.77, p = 0.040). Findings indicate the relevance of trust and chronic illness management in the transplant ecosystem to achieve improved transplant outcomes. Thus, further investment in re-engineering of transplant follow-up toward chronic illness management, and sufficient time for consultations is required.

Collaborative Autoethnography of Cancer Patients' Dynamic Sense of Agency.

Through collaborative autoethnography, we studied shifts in cancer patients' sense of agency and the meaning of cancer during the diagnostic and treatment phases. This article contributes to the illness management literature by adopting sense of agency perspective that provides new understanding of retrospective interpretation of cancer patients' agency. The authors' experiences of receiving cancer diagnoses and a related, collectively written story illustrate how relational and contextual elements facilitate rapid shifts in cancer patients' sense of agency and illness management. The findings illustrate shifts in the sense of agency as a collaborative and reflexive process between cognitive, emotional, and bodily constraints and adjustments. We demonstrate how shifts in patients' sense of agency and respective changes in meanings attached to cancer were shaped by near ones, healthcare actors, and other cancer patients, as well as the COVID-19 pandemic and the fear of military conflict due to Finland neighbor Russia's war on Ukraine. Furthermore, the study illustrates how shifts in sense of agency shape and are shaped by changes in the understanding of cancer as either a secondary issue, ambiguous stranger, travel companion, or enemy.

The Relationship of Functioning and Life Satisfaction with Illness Management and Recovery in Patients with Bipolar Disorder: A Cross-Sectional Study.

The aim of this study was to determine relationship between functioning and life satisfaction with illness management and recovery, and determinants of illness management and recovery in patients with bipolar disorder. This descriptive and correlational study was conducted with 152 participants between August 2022 and February 2023. "Personal Information Form", "Illness Management and Recovery Scale", "Functioning Assessment Short Test" and "Adult Life Satisfaction Scale" were used to collecting data. In study, a positive relationship was found between illness management and recovery and total functionality, autonomy, cognitive functionality, interpersonal relationships, and life satisfaction. Gender, marital status, educational status, employment status, total functioning, autonomy, cognitive functioning, interpersonal relationships, and life satisfaction were found to be effective in illness management and recovery. Being female, single, primary school graduate, unemployed, having low functioning (autonomy, cognitive functioning, interpersonal relationships) and having low life satisfaction were found to be determinants of illness management and recovery.

Wellness in Chronic Care (WCC) families, illness & disability: an integrative clinical intervention model.

This paper describes the Wellness in Chronic Care (WCC) model, an innovative integrative clinical intervention method aimed at helping social workers manage the care of patients living with chronic illnesses and their families. The goal is to propose appropriate clinical responses to the changing reality of the health system. This new reality poses new challenges that require caregivers (social work practitioners and family members) to develop suitable skills and expertise. The intervention method we developed offers a new paradigm that entails partnership and the need to assume responsibility in decision-making while coping with the illness over time. The intervention provides practical tools and methods for coping and managing the illness. These factors have contributed to building a specifically tailored intervention program for patient and family care to achieve an effective and meaningful wellbeing. An assessment of the training program of the intervention model and its implementation is presented. The model was found to be essential yet some found it difficult to make the needed changes.

'I became more aware of my actions'-A qualitative longitudinal study of a health psychological group intervention for patients with myalgic encephalomyelitis/chronic fatigue syndrome.

OBJECTIVES: To explore myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients' experiences of a health psychological group intervention and its usefulness, non-usefulness or harmfulness for illness management and adjustment. DESIGN: A qualitative longitudinal study using inductive content analysis. METHODS: Semistructured interviews were conducted with 10 adults. Interviews were conducted before the 16-week intervention, immediately after its completion, and at 3 months after completion. RESULTS: Participants reported that the intervention was useful and not harmful. The model improved their ability to cope with ME/CFS by providing them with useful information about the illness along with peer support and professional guidance. Participants reported improved illness management and adjustment, which they perceived as an outcome of achieving new ways of thinking, feeling and acting. CONCLUSIONS: Participants viewed the health psychological approach to group intervention as meeting their needs. To achieve better illness management and adjustment, more consideration should be given to supportive interactional processes with peers and healthcare professionals. PATIENT OR PUBLIC CONTRIBUTION: The intervention was developed to meet patients' needs of finding ways to manage their illness. The research team consulted eight patients with ME/CFS and three clinical centres working with ME/CFS treatment and rehabilitation at the intervention planning stage. Their comments influenced the planning and content of the intervention as well as ethical issues that should be considered, such as potential harm to participants. All participants were informed about the theoretical foundations of the study and the principles guiding the intervention. Participants were not involved in the data analysis. CLINICAL TRIAL REGISTRATION: NCT04151693.

Fidelity and Clinical Competence in Providing Illness Management and Recovery: An Explorative Study.

Illness Management and Recovery (IMR) is a psychosocial intervention supporting people with serious mental illnesses. In this study, 15 IMR groups were assessed for fidelity and clinician competency to establish the implementation level of all IMR elements and explore complementarity of the IMR Treatment Integrity Scale (IT-IS) to the standard IMR Fidelity Scale. Use of the IT-IS was adapted, similar to the IMR Fidelity Scale. Descriptive statistics were applied. Implementation success of IMR elements varied widely on the IMR Fidelity Scale and IT-IS (M = 3.94, SD = 1.13, and M = 3.29, SD = 1.05, respectively). Twelve IMR elements (60%) were well-implemented, whereas eight (40%) were implemented insufficiently, including some critical cognitive-behavioral techniques (e.g., role-playing). The scales appeared largely complementary, though strongly correlated (r (13) = 0.74, p = 0.002). Providing all IMR elements adequately requires a variety of clinical skills. Specific additional training and supervision may be necessary.

Challenges experienced and resources identified by young to midlife couples 1-3 years post-cancer diagnosis.

OBJECTIVE: The purpose of this study was to explore what young to midlife couples viewed as their strengths as a couple and the greatest challenges in their experience with cancer 1-3 years post-diagnosis. METHODS: We used qualitative content analysis to extract common themes from open-ended questions from 42 cancer survivors and their partners (aged 27-58). Patterns of themes by age and gender of the survivor were also explored. RESULTS: Couples described both positive and negative impacts of the cancer experience: (1) strengthened the relationship, bringing couples closer together; (2) brought emotional strain to many areas of life, especially for partners; (3) created positive changes in lifestyle and new priorities for the couple; (4) created strain in the couple's relationship and intimacy; and (5) altered the role of family in supporting the couple. Couples also described four key strengths in dealing with the cancer experience: (1) drawing strength from shared love and mutuality; (2) communicating openly, even about the difficult stuff; (3) working together as a team to support each other; and (4) drawing strength from shared values and goals. Couples reported unmet needs related to the emotional and relational strain of the cancer experience, managing longer term survivor symptoms, fertility and physical intimacy, and lack of support or attention to the partner who often assumed the role of care partner. CONCLUSIONS: Themes are discussed in light of current dyadic concepts and importance of couple-based interventions.

"The Rest of my Childhood was Lost": Canadian Children and Adolescents' Experiences Navigating Inflammatory Bowel Disease.

Children and adolescents with Inflammatory Bowel Disease (IBD) face significant and unique challenges related to their condition. The aim of this study was to better understand some of these challenges, and to explore how Canadian youth respond to them. We interviewed 25 pediatric patients with IBD, ranging in age from 10-17, to find out about their illness experiences. Using a thematic analysis, we discerned three themes: challenges related to diagnosis, making sense of change, and navigating sociability. Taken together, they paint a picture of young people facing great uncertainty prior to diagnosis, pronounced changes to selfhood as they make lifestyle adjustments, and facing difficulties with the implications of reduced sociability because of their disease. We conclude by providing recommendations for the development of resources aimed at helping newly diagnosed pediatric patients navigate these issues.

Perspectives on Remote Glucose Monitoring in Youth With Type 1 Diabetes.

OBJECTIVE: Continuous glucose monitoring (CGM) has become increasingly popular among youth with type 1 diabetes (T1D). Used with CGM, remote monitoring (RM) gives caregivers real-time access to patients' glucose values. Whereas RM may safeguard against hypo- and hyperglycemic events, little is known about how older children and adolescents, who are striving for independence, and their parents view the RM aspect of CGM. The goal of this study was to describe and explore parent and youth perceptions of RM. METHODS: Youth with T1D and their parents participated separately in semi-structured interviews 2 months after starting CGM. Questions focused on decisions to use and experiences with RM. RESULTS: Analysis of 43 parents and 41 youth (13.79 years ± 2.82) interviews revealed four themes, with 10 subthemes. Seven subthemes emerged in parent and youth interviews, and three emerged exclusively in parent interviews. The overarching themes included the impact of RM on (1) peace-of-mind, (2) parental anxiety, (3) communication; and addressed (4) technological limitations that prevented some from using RM. Regardless of youth age, youth and parents found comfort in parental knowledge of glucose values and parental abilities to assist youth (e.g., giving reminders to eat). Whereas RM could lead to conflicts due to excessive communication (e.g., texting), conflicts could be resolved through iterative parent-youth conversations. CONCLUSION: RM may facilitate youth independence by providing a way for them to stay connected to their support system while acquiring developmentally appropriate skills. However, families should have iterative discussions about boundaries to mitigate parental over-involvement.

Identifying the minimal important difference in patient-reported outcome measures in the field of people with severe mental illness: a pre-post-analysis of the Illness Management and Recovery Programme.

PURPOSE: Complementary interventions for persons with severe mental illness (SMI) focus on both personal recovery and illness self-management. This paper aimed to identify the patient-reported outcome measures (PROMs) associated with the most relevant and meaningful change in persons with SMI who attended the Illness Management and Recovery Programme (IMR). METHODS: The effect of the IMR was measured with PROMs concerning recovery, illness self-management, burden of symptoms and quality of life (QoL). From the QoL measures, an anchor was chosen based on the most statistically significant correlations with the PROMs. Then, we estimated the minimal important difference (MID) for all PROMs using an anchor-based method supported by distribution-based methods. The PROM with the highest outcome for effect score divided by MID (the effect/MID index) was considered to be a measure of the most relevant and meaningful change. RESULTS: All PROMs showed significant pre-post-effects. The QoL measure 'General Health Perception (Rand-GHP)' was identified as the anchor. Based on the anchor method, the Mental Health Recovery Measure (MHRM) showed the highest effect/MID index, which was supported by the distribution-based methods. Because of the modifying gender covariate, we stratified the MID calculations. In most MIDs, the MHRM showed the highest effect/MID indexes. CONCLUSION: Taking into account the low sample size and the gender covariate, we conclude that the MHRM was capable of showing the most relevant and meaningful change as a result of the IMR in persons with SMI.

Validation of the RAISE (Readiness Assessment of Independence for Specialty Encounters) Tool: Provider-Based Transition Evaluation.

PURPOSE: The aim of this study was to establish content validity of a developmentally based assessment tool of readiness for medical independence for specialty providers. DESIGN AND METHODS: The validation process used expert panel evaluation to assess the items believed to measure the desired content in the nine age-based scales within the RAISE (Readiness Assessment of Independence for Specialty Encounters) tool. Experts in child development and transition rated items on relevance, clarity and developmental appropriateness via electronic survey. Statistical analyses included calculation of interrater agreement (IRA), content validity indices (CVIs), and factorial validity indices (FVI). RESULTS: A total of 135 items were rated by 36 experts. Mean I-CVIs for 123 items across nine developmental scales met criteria for retention, ranging from 0.76 (threshold) to 1.00 (excellent). Mean I-CVIs for all 25 items across the five psychosocial stressor scales met criteria for retention, ranging from 0.92 to 1.00 (excellent). CONCLUSIONS: Findings from the current content validation study suggest that items on the revised RAISE tool are relevant, clear, and developmentally-appropriate as rated by experts in the fields of child development and transition. The tool, consisting of age based scales (ages birth-2, 3-4, 5-6, 7-8, 9-11, 12-13, 14-15, 16-17, 18-21), is shown to have content validity of the retained items meeting criteria. PRACTICE IMPLICATIONS: With content validity of the RAISE tool established by experts, this developmentally based assessment tool can be integrated into practice to assist providers in educating patients around skills of medical independence which could improve transition outcomes.

The effectiveness of illness management and recovery program in patients with schizophrenia.

AIM: This study was conducted to determine the effect of the illness management and recovery program in patients with schizophrenia. METHODS: This study was conducted using a pretest, posttest and follow up experimental design with randomized controlled. The sample of this study consisted of patients with schizophrenia (n = 50). The patients were assigned to intervention (n = 25) and control (n = 25) groups using the randomisation method. The intervention group consisted of 10 modules and 20 sessions of Illness Management and Recovery Program, while in the control group, a face-to-face interview. Data were collected by the Illness Management and Recovery Scale-Patient Form (IMRS-P) and Social Functioning Scale-Patient Form (SFS-P). RESULTS: There were significant differences in posttest and 1-month follow-up IMRS-P points between the intervention and control groups. There was no significant difference in post-test and 1-month follow-up SFS-P total points between the intervention and control groups. There were only significant differences for the pro-social activities' subscale of SFS-P. CONCLUSION: The Illness Management and Recovery Program have a positive effect on illness management and social functionality in patients with schizophrenia. In the light of this study, it was suggested that this structured program should be used by mental health and psychiatric nurses.

A 2-year longitudinal study of neuropsychological functioning, psychosocial adjustment and rehospitalisation in schizophrenia and major depression.

Neuropsychological functioning turns out to be a rate-limiting factor in psychiatry. However, little is known when comparing neuropsychological and psychosocial functioning in inpatients with schizophrenia or severe depression in their treatment pathways including add-on psychoeducation or the latter combined with cognitive behavioral therapy up to 2-year follow-up. To evaluate this question, we investigated these variables in two randomised controlled trials including 196 patients with DSM-IV schizophrenia and 177 patients with major depression. Outcome measures were assessed in the hospital at pre- and posttreatment and following discharge until 2-year follow-up. We focused on neuropsychological and psychosocial functioning regarding its differences and changes over time in data of two pooled trials. There were significant time effects indicating gains in knowledge about the illness, short and medium-term memory (VLMT) and psychosocial functioning (GAF), however, the latter was the only variable showing a time x study/diagnosis interaction effect at 2-year follow-up, showing significant better outcome in depression compared to schizophrenia. Moderator analysis showed no changes in psychosocial and neuropsychological functioning in schizophrenia and in affective disorders due to age, duration of illness or sex. Looking at the rehospitalisation rates there were no significant differences between both disorders. Both groups treated with psychoeducation or a combination of psychoeducation and CBT improved in neuropsychological and psychosocial functioning as well as knowledge about the illness at 2-year follow-up, however, patients with major depression showed greater gains in psychosocial functioning compared to patients with schizophrenia. Possible implications of these findings were discussed.

Psychometric Properties of a Fidelity Scale for Illness Management and Recovery.

This study examined the psychometric properties and feasibility of the Illness Management and Recovery (IMR) Fidelity scale. Despite widespread use of the scale, the psychometric properties have received limited attention. Trained fidelity assessors conducted assessments four times over 18 months at 11 sites implementing IMR. The IMR Fidelity scale showed excellent interrater reliability (.99), interrater item agreement (94%), internal consistency (.91-.95 at three time points), and sensitivity to change. Frequency distributions generally showed that item ratings included the entire range. The IMR Fidelity scale has excellent psychometric properties and should be used to evaluate and guide the implementation of IMR.Trial registration: ClinicalTrials.gov Identifier: NCT03271242.

A Multilevel Modeling Approach to Examine Incongruent Illness Appraisals in Family Care Dyads Over Time.

Over the past two decades, there has been movement toward a dyadic perspective of the illness experience. Although multilevel models have led to great insights into how dyads are affected by illness as family units, these models are still underutilized for understanding incongruent illness appraisals. Such incongruent appraisals can have implications for how the dyad collaborates to manage illness, the health of the dyad, and clinical outcomes. The focus of this article is to describe and promote the application of multilevel models to longitudinal dyadic data to understand incongruent illness appraisals over time. In particular, we present a data exemplar so researchers can apply these models to their own data and clinical questions to understand the ways care dyads converge and diverge in their appraisals and determine factors associated with such variability. We comment on the implications and extensions of these models for family nursing research and practice.

Cultural Dimensions of Diabetes Management: a Qualitative Study of Middle Eastern Immigrants in the U.S.

This study examined how aspects of culture, social support, isolation, and loneliness are perceived as influences in chronic illness management by pre-diabetic (Glycated hemoglobin A1c levels between 5.7 and 6.4) or Type 2 diabetic patients (A1c levels between 6.4 and 8). Twenty-eight Middle Eastern immigrants in the greater Philadelphia area were interviewed using a semi-structured approach. Results were consistent with other research which suggests that patients benefit from family and community support in the management of their illness. However, findings also suggest that even in the presence of strong family and social support, patients report increased feelings of isolation and loneliness because they have to manage a complex illness that requires many lifestyle changes. For immigrant suffering from chronic illnesses, social gatherings, especially those that center on the consumption of traditional ethnic food, can be highly stressful because they need to avoid such foods as part of their daily treatment regimen. The results of this study have significant implications for patients, physicians, and psychologists who can benefit from an increased sensitivity to patients' challenges in illness management by understanding how cultural factors affect compliance in diabetes treatment regimens.

Illness management and recovery: one-year follow-up of a randomized controlled trial in Danish community mental health centers: long-term effects on clinical and personal recovery.

BACKGROUND: Illness Management and Recovery (IMR) is a curriculum-based rehabilitation program for people with severe mental illness with the short-term aim of improving illness self-management and the long-term aim of helping people achieve clinical and personal recovery. METHOD: Participants with schizophrenia or bipolar disorders were recruited from three community mental health centers in the Capital Region of Denmark and randomized to receive group-based IMR and treatment as usual or only the usual intervention. All outcomes were assessed at baseline, postintervention, and the one-year follow-up. Long-term outcomes were categorized according to clinical recovery (i.e., symptoms, global functioning, and hospitalization) and personal recovery (i.e., hope and personal agency). Generalized linear mixed model regression analyses were used in the intent-to-treat analysis. RESULTS: A total of 198 participants were included. No significant differences were found between the IMR and control groups in the Global Assessment of Functioning one year after the intervention, nor were there significant differences in symptoms, number of hospital admissions, emergency room visits, or outpatient treatment. CONCLUSION: The present IMR trial showed no significant effect on clinical and personal recovery at the one-year follow-up. Together with the results of other IMR studies, the present study indicates that the effect of IMR on symptom severity is unclear, which raises questions regarding the impact of IMR on functioning. Additionally, IMR did not affect personal recovery. Although more research is needed, the results indicate that the development of other interventions should be considered to help people with severe mental illness achieve a better level of functioning and personal recovery. TRIAL REGISTRATION: Trial registered at http://www.clinicaltrials.gov ( NCT01361698 ).

Shedding new light on the (in)compatibility of chronic disease management with everyday life - social practice theory, mobile technologies and the interwoven time-spaces of teenage life.

This article uses a socio-material approach, social practice theory, to provide new insights into the self-management of chronic illness. It demonstrates how this theory can bridge arguments about the respective roles of social and individual influences, and how it can foreground an oft-overlooked aspect of the issue - the demands of self-care technologies and consequences for participation in social life. Drawing on interviews and focus groups with 25 young type-1 diabetes outpatients in London, UK, the study points to the conflicts that occur when disease management technologies compete for time and space with the social practices of everyday life, and when self-care tasks threaten to interrupt the flow of social life and make people feel 'left behind'. The paper concludes that young people are disabled by the contingent position of self-care activities in daily life, which oblige them to compromise either their physical health or their immersion in the social world. This disabling effect would be mitigated if social practices were reorganised to make them more amenable to the time-space requirements of disease management. A social practice theory lens can help throw light onto this issue and make a valuable contribution to the study of the self-management of chronic illness.

Clinical and brain structural effects of the Illness Management and Recovery program in middle-aged and older patients with schizophrenia.

AIMS: In this study, we implemented the Illness Management and Recovery (IMR) program for middle-aged and older patients with schizophrenia hospitalized for long periods and assessed the effect of the IMR program on psychiatric symptoms and psychosocial function. The effects of the IMR program on brain structure were also evaluated. METHODS: The IMR program was implemented for 19 patients with schizophrenia; 17 patients with schizophrenia receiving treatment as usual (TAU) were also recruited as controls. In all patients, mean age was 61.4 years (range, 50-77 years) and mean hospitalization duration was 13.1 years (range, 1-31 years) at enrollment. Structural magnetic resonance images and Positive and Negative Syndrome Scale (PANSS) and Global Assessment of Functioning (GAF) scores as clinical variables were obtained at the beginning and end of the IMR program. Longitudinal analyses were performed to compare the effects of the IMR program on clinical symptoms and cortical thickness in the superior temporal gyrus (STG) between the IMR and TAU groups. RESULTS: Significant improvements in GAF scores and the total, Insight and Judgment, and Positive components of the PANSS were found in the IMR group compared with the TAU group. Cortical thickness in the left STG was preserved in the IMR group compared with the TAU group. CONCLUSIONS: This is the first report demonstrating the effectiveness of the IMR program for improving psychotic symptoms and psychosocial function and protecting brain structure in middle-aged and older inpatients with schizophrenia hospitalized for long periods.

Developing a rare disease chronic care model: Management of systemic sclerosis (MANOSS) study protocol.

AIM: The aim of the management of systemic sclerosis (MANOSS) study described in this protocol is to develop a chronic care model, based on a contextual analysis and stakeholder involvement, for patients living with the rare disease systemic sclerosis (SSc) in Switzerland. DESIGN: Applying an implementation science approach, this study starts with an explanatory sequential mixed method study for contextual analysis, followed by broad stakeholder involvement for model development and a Delphi study to reach consensus. METHODS: First, a quantitative cross-sectional survey with patients and healthcare professionals (HPs) will be conducted to identify current practice patterns of chronic illness management and technology readiness. Second, qualitative interviews with patients, family members and HPs will be performed to gain a deeper understanding of care needs identified in the quantitative survey. Third, a model of care will be co-created with input from patients, HPs and other experts. The eHealth enhanced Chronic Care Model will serve as a guiding framework. The new model and corresponding outcome parameters will be refined using a Delphi-study approach to reach consensus on a testable model of care for persons living with SSc. The protocol has received research ethics committee approval in September 2018 by the Swiss Ethics Committee. DISCUSSION: The MANOSS study's participatory approach is essential for contextual fit of the model for patients with SSc in this setting. Subsequent feasibility testing and implementation are planned to evaluate the model's value in relation to health disparities faced by this patient population. IMPACT: Patients living with this rare disease lack access to coordinated, specialized care and self-management support from qualified HPs. Reengineering of current care, with consideration for technological opportunities, is warranted to meet patients' and families' needs.