Navigating narcolepsy: exploring coping strategies and their association with quality of life in patients with narcolepsy type 1.

Narcolepsy type 1 (NT1) is a chronic neurological disorder characterized by symptoms such as excessive daytime sleepiness, sudden sleep episodes, disrupted nocturnal sleep, cataplexy, sleep paralysis, and hypnagogic hallucinations, which significantly impact the overall well-being and quality of life of individuals. While psychological factors have gained attention, there is limited research on the coping strategies employed by patients with NT1 and their association with quality of life. This study aimed to compare coping strategies in patients with NT1 and controls, as well as assess the relationship between coping strategies and quality of life in patients with NT1. A total of 122 individuals diagnosed with NT1 and 138 controls were enrolled in this cross-sectional study. Participants completed questionnaires assessing coping strategies and health-related quality of life. A Mann-Whitney U test was conducted to compare the use of different coping strategies by patients with NT1 and controls. Spearman's rho correlation was performed to examine the association between coping strategies and quality of life in the NT1 group. Results showed that patients with NT1 exhibited differences in the use of coping strategies compared to controls. They reported lower use of active coping, planning, instrumental, and emotional social support, and higher use of behavioral and mental disengagement. Denial and behavioral disengagement were significantly and negatively associated with quality of life. Identifying coping strategies and their association with quality of life may aid in the development of tailored interventions aimed at improving the adoption of effective coping strategies and reducing the use of maladaptive coping strategies.

Recognizing and Appreciating the Partner's Support Protects Relationship Satisfaction during Cardiac Illness.

BACKGROUND: This study aimed to examine whether dyadic coping (DC) is associated with relationship satisfaction (RS) among couples facing cardiac diseases. Furthermore, the moderating role of both partners' anxiety and depression was tested. METHODS: One hundred cardiac patients (81.5% men) and their partners (81.5% women) completed a self-report questionnaire during hospitalization. The Actor-Partner Interdependence Model (APIM) and moderation analyses were used to assess the above associations. RESULTS: Results showed that positive DC was significantly related to higher levels of RS, and negative DC was related to lower levels of RS. Furthermore, patient and partner psychological distress significantly moderated the link between DC and RS: patient-perceived positive DC was associated with higher partner RS when partner depression was high; partner-perceived positive DC was associated with higher patient RS when patient anxiety was low; patient-perceived negative DC has associated with lower patient RS when patient anxiety and depression were high. CONCLUSION: This study showed that positive DC is associated with a more satisfying relationship and identified under what conditions of cardiac-related distress this can happen. Furthermore, this study underlined the importance of examining DC in addition to the individual coping skills as a process pertaining to personal well-being and couple's outcomes.

Suicidal ideation in female individuals with fibromyalgia and comorbid obesity: prevalence and association with clinical, pain-related, and psychological factors.

OBJECTIVE: Individuals with fibromyalgia report alarming levels of suicidal ideation, and comorbidity with other chronic health conditions such as obesity-a risk factor for suicidal ideation per se-could further complicate the clinical picture. The aim of this study is to determine, in a sample of women with fibromyalgia and comorbid obesity, the prevalence of suicidal ideation and to evaluate clinical, pain-related and psychological factors associated with suicidal ideation. METHODS: In total, 156 female individuals with fibromyalgia and obesity were recruited and completed a series of self-report measures that assessed (i) the level of pain intensity, (ii) depressive symptomatology, (iii) sleep quality, and (iv) pain catastrophizing. Suicidal ideation was evaluated by item #9 of the Beck Depression Inventory. In addition, information regarding previous suicide attempts and current opioid use was collected. RESULTS: 3n sum, 7.8% of participants reported presence of suicidal ideation. According to the results of the multiple logistic regression, depressive symptomatology, sleep quality, and pain catastrophizing were associated with the presence of suicidal ideation. DISCUSSION: The presence of suicidal ideation in our sample was significantly associated with depressive symptomatology, sleep quality, and pain catastrophizing. Our findings are the first to suggest a unique (ie, independent of depressive symptomatology, and sleep quality) association between pain catastrophizing and suicidal ideation in the context of fibromyalgia and comorbid obesity. In order to prevent and reduce suicidal ideation, these factors should be assessed and targeted in interventions for pain management. Future research should investigate the extent to which addressing depressive symptoms, sleep quality, and pain catastrophizing reduces suicidal ideation.

Psychological couple-oriented interventions for patients with heart disease and their partners: a scoping review and guidelines for future interventions.

Objective: This scoping review aims to provide an accessible summary of available evidence on the efficacy of psychological couple-based interventions among patients with heart disease and their partners focusing on specific aspects and strategies by assessing different emotional and physical cardiac-related outcome measures. Methods: A literature search was performed in PubMed, Scopus, Medline, PsycINFO, and Web of Science databases using the keywords "heart diseases" and "couple-based intervention." A literature search using systematic methods was applied. Data were extracted to address the review aims and were presented as a narrative synthesis. Results: The database search produced 11 studies. Psychological couple-based interventions varied in terms of the type of intervention, personnel, format (group or individual, phone or in person), number of sessions, and duration. Most of the contributions also lacked adequate details on the training of professionals, the contents of the interventions, and the theoretical models on which they were based. Finally, although partners were involved in all the treatment, in most studies, the psychological strategies and outcomes were focused on the patient. Conclusion: The variability of the psychological couple-based interventions of included studies represents a challenge in summarizing the existing literature. Regarding their impact, psychological interventions for patients with cardiovascular disease and their partners were found to moderately improve patients' and partners' outcomes.

Poor sleep hygiene practices are associated with a higher increase in sleep problems during the COVID-19 pandemic: A latent change score model.

The Coronavirus 2019 (COVID-19) pandemic significantly influenced physical and mental health worldwide. The present study aimed to investigate changes in sleep problems across three waves of the COVID-19 pandemic, and to identify potential predictors of the inter-individual variability around these changes, with a particular focus on the role of detrimental sleep hygiene practices. A total of 352 participants completed an online survey of self-report questionnaires at three different waves of the COVID-19 pandemic: T1 (Spring 2020); T2 (Autumn-Winter 2020); and T3 (Spring 2021). The questionnaires collected information on socio-demographic and COVID-19-related variables, psychological distress (i.e. the Depression Anxiety Stress Scale-21), sleep hygiene (i.e. the Sleep Hygiene Index) and sleep problems (i.e. the Medical Outcomes Study-Sleep Scale). Latent change score modelling revealed an average increase in sleep problems between T1 and T2 with significant inter-individual variability. No substantial changes were observed on average between T2 and T3. Notably, poorer sleep hygiene practices were associated with a more pronounced increase in sleep problems between T1 and T2 (ß = 0.191, p = 0.013), even after controlling for relevant confounders such as demographic factors, COVID-19-related information and psychological distress. These findings expand on previous research regarding the detrimental effects of the pandemic on mental health, suggesting that interventions targeting sleep hygiene practices may be beneficial for mitigating its negative impact on sleep disruptions.

The long wave of COVID-19: a case report using Imagery Rehearsal Therapy for COVID-19-related nightmares after admission to intensive care unit.

Introduction: The COVID-19 pandemic caused several psychological consequences for the general population. In particular, long-term and persistent psychopathological detriments were observed in those who were infected by acute forms of the virus and need specialistic care in the Intensive Care Unit (ICU). Imagery rehearsal therapy (IRT) has shown promising results in managing nightmares of patients with different traumas, but it has never been used with patients admitted to ICUs for severe COVID-19 despite this experience being considered traumatic in the literature. Methods: The purpose of this case study is to describe the application of a four-session IRT for the treatment of COVID-related nightmares in a female patient after admission to the ICU. A 42-year-old Caucasian woman who recovered from a pulmonary rehabilitation program reported shortness of breath, dyspnea, and everyday life difficulties triggered by the long-COVID syndrome. She showed COVID-related nightmares and signs of post-traumatic symptoms (i.e., hyperarousal, nightmares, and avoidance of triggers associated with the traumatic situation). Psychological changes in the aftermath of a trauma, presence, and intensity of daytime sleepiness, dream activity, sleep disturbances, aspects of sleep and dreams, and symptoms of common mental health status are assessed as outcomes at the baseline (during the admission to pneumology rehabilitation) at 1-month (T1) and 3-month follow-up (T2). Follow-up data were collected through an online survey. Results: By using IRT principles and techniques, the patient reported a decrease in the intensity and frequency of bad nightmares, an increase in the quality of sleep, and post-traumatic growth, developing a positive post-discharge. Conclusion: Imagery rehearsal therapy may be effective for COVID-19-related nightmares and in increasing the quality of sleep among patients admitted to the ICU for the treatment of COVID-19. Furthermore, IRT could be useful for its brevity in hospital settings.

"The heart in a bag": The lived experience of patient-caregiver dyads with left ventricular assist device during cardiac rehabilitation.

Objective: The Left Ventricular Assist Device (LVAD) has increasingly become a primary therapeutic option for longer-waiting heart transplant lists. Although survival rates are growing, the device requires complex home care. Therefore, the presence of a caregiver trained in the LVAD management is important for the success of the therapy. The LVAD leads both patients and their caregivers to experience new challenges and adapt to new lifestyle changes and limitations - but their subjective beliefs before home management remained little explored. Design: This study identified, using a phenomenological hermeneutic approach, the main components of the LVAD experience of six patient-caregiver dyads interviewed during cardiac rehabilitation. Results: We identified 4 master themes: Being between life and death, Being human with a heart of steel, Sharing is caring (and a burden), and Being small and passive. Conclusion: The knowledge from this study can be used as a guide for healthcare providers in counseling LVAD recipients and their caregivers.

Corrigendum: Assessing the needs and perspectives of patients with obesity and obstructive sleep apnea syndrome following continuous positive airway pressure therapy to inform health care practice: A focus group study.

[This corrects the article DOI: 10.3389/fpsyg.2022.947346.].

Corrigendum: Improving CPAP adherence in adults with obstructive sleep apnea syndrome: A scoping review of motivational interventions.

[This corrects the article DOI: 10.3389/fpsyg.2021.705364.].

Corrigendum: Study protocol of a randomized controlled trial of motivational interviewing-based intervention to improve adherence to continuous positive airway pressure in patients with obstructive sleep apnea syndrome: The MotivAir study.

[This corrects the article DOI: 10.3389/fpsyg.2022.947296.].

Assessing the needs and perspectives of patients with obesity and obstructive sleep apnea syndrome following continuous positive airway pressure therapy to inform health care practice: A focus group study.

Objective: This study aims to investigate the lived experience in patients with obstructive sleep apnea syndrome (OSAS) and comorbid obesity following after continuous positive airway pressure (CPAP) therapy made with the disease the device, and to identify barriers and facilitators to the use of CPAP to improve rehabilitation provision and aid in disease self-management. Methods: Qualitative research was conducted using three focus groups with a representative sample of 32 inpatients (37% female) undergoing a 1-month pulmonary rehabilitation program at the IRCSS Istituto Auxologico Italiano San Giuseppe Hospital, Verbania, Italy. The focus groups were recorded on tape, and contemporaneous notes were made. The tapes were transcribed verbatim, and Interpretative Phenomenological Analysis was used to develop themes. Results: Six main themes were extracted: (1) Living the diagnosis as a shock; (2) You should not sleep on it: the importance of prevention; (3) The adjustment to CPAP; (4) Barriers and facilitators to the use of CPAP; (5) Three in a bed; and (6) The relationship with the healthcare system. Conclusion: Results of this study suggest potential avenues for interventions to increase adherence to CPAP, including the provision of information and continued support. Individual counseling providing strategies aimed at helping the person to cope with the emotional problem and relational difficulties associated with the use of CPAP, and at strengthening self-efficacy and self-management skills are also encouraged for optimal care during the rehabilitation program.

Study protocol of a randomized controlled trial of motivational interviewing-based intervention to improve adherence to continuous positive airway pressure in patients with obstructive sleep apnea syndrome: The MotivAir study.

Objective: This study aims to evaluate the effectiveness of the MotivAir program-a phone-based intervention based on Motivational Interviewing (MI) principles and techniques-in enhancing adherence to Continuous Positive Airway Pressure (CPAP) therapy among patients with Obstructive Sleep Apnea Syndrome (OSAS). Methods: A multicenter randomized controlled trial (RCT) design with random allocation at the level of the individual will be conducted to compare the impact of the experimental program (usual care plus MI) with a control group receiving usual care only in improving selected clinical and psychological parameters in the patients. A minimum sample of 80 participants (40 patients per group) will be recruited in each center according to the inclusion criteria. After the initial screening, participants will be randomly assigned to either the experimental group or the control condition. The program will last 180 days and will be delivered by a trained nurse. The impact of the MotivAir program on selected primary (adherence to CPAP in terms of average hours of usage per night and the Apnea-Hypopnea Index, AHI) and secondary (motivation, perceived competence, quality of life, sleepiness) outcomes will be measured at baseline, and after 1-, 3-, and 6-month from CPAP initiation. Discussion: Participants are expected to show an increased level of adherence to CPAP and to acquire the skills and self-confidence necessary to deal with the psychological consequences of their chronic condition.

Yes, I can (with you)! Dyadic coping and self-management outcomes in cardiovascular disease: The mediating role of health self-efficacy.

Cardiac patients show alarming levels of nonadherence to medications. It is important to consider also patient activation levels. Furthermore, the partner could have a supporting role in these processes. The aim of this study was to investigate the mediating role of patient health self-efficacy (HSE) in the link between dyadic coping (DC) and two self-management outcomes (i.e. medication adherence and patient activation) across the first 6 months of cardiac disease. One hundred couples completed two self-report questionnaires during the hospitalisation for cardiac disease and 6 months after discharge. A longitudinal and dyadic research design was adopted. Cross-sectional analyses at T0 revealed that patient-provided and perceived positive DC and common DC are positively associated with HSE, which in turn is positively associated with medication adherence. HSE mediated the association between patient positive and common DC styles, with the only exception of Patient-provided positive DC, and patient activation. Conversely, patient-provided and perceived negative DC are negatively associated with HSE, which in turns is positively associated with medication adherence and patient activation. Prospective analyses showed that only patient-perceived negative DC at discharge is negatively associated with HSE at T1, which in turns is positively associated with patient activation over time. These results suggest to consider patient perceived and provided DC as antecedents of self-management outcomes via patient HSE. Furthermore, our results recommend to pay particular attention to negative DC, whose negative consequences are manifested also over time, planning interventions targeting partners' awareness of their own DC style.

Improving CPAP Adherence in Adults With Obstructive Sleep Apnea Syndrome: A Scoping Review of Motivational Interventions.

Objective: This scoping review aims to provide an accessible summary of available evidence on the efficacy of motivational interventions to increase adherence to Continuous Positive Airway Pressure (CPAP) among patients with Obstructive Sleep Apnea Syndrome (OSAS) and of their specific aspects and strategies by assessing adherence measures. Methods: A literature search was performed in PubMed, Scopus, Medline, PsycINFO, and Web of Science databases using the concepts of "obstructive sleep apnea syndrome," "continuous positive airway pressure," "motivational intervention," and "adherence." Rigorous inclusion criteria and screening by at least two reviewers were applied. Data were extracted to address the review aims and were presented as a narrative synthesis. Results: Search for databases produced 11 randomized controlled trials, all including naïve CPAP users. Findings showed that motivational interventions were more effective than usual care and educational programs in increasing adherence to CPAP, despite results were not always maintained over time across studies. Discussion: To our knowledge, this is the first scoping review of the literature aimed to explore the characteristics and impact of motivational interventions to promote adherence to CPAP in patients with OSAS. More research providing a detailed description of motivational strategies, and testing of their association with positive treatment outcomes via both direct and indirect measures are needed to increase awareness on active mechanisms of change.

The Impact of Social Isolation during the COVID-19 Pandemic on Physical and Mental Health: The Lived Experience of Adolescents with Obesity and Their Caregivers.

Adolescence is a complex developmental phase, made more complex by obesity and the social isolation imposed by the COVID-19 pandemic. The literature related to the impact of social isolation on obesity self-management in adolescents is scant and inconsistent. This paper describes the phenomenon from the perspectives of a sample of adolescents with obesity enrolled in an inpatients' multidisciplinary rehabilitation program for weight-loss and their caregivers, and its impact on different life domains. Individual semi-structured ad hoc interviews were conducted with 10 adolescent-caregiver dyads, and narratives were qualitatively investigated using an interpretative phenomenology approach to data. Twenty participants took part in the study. The major themes that emerged from this study fall into five basic categories: (1) COVID-19 as an opportunity to reconsider what makes a good life; (2) Persistence in life; (3) Empowering relationship; (4) Daily routine in quarantine; (5) Lives on hold. Understandings drawn from this study may assist health care professionals in providing holistic support, and guidance to adolescents with weight-related issues and their caregivers who experience social isolation during the COVID-19 pandemic.

Cardiac-specific experiential avoidance predicts change in general psychological well-being among patients completing cardiac rehabilitation.

Previous studies have shown that experiential avoidance (EA) is associated with physical and psychological well-being in medical and non-medical samples. The aims of the present study were to evaluate the reciprocal association between psychological well-being and EA over time among cardiac rehabilitation (CR) patients with moderately to severely low levels of psychological well-being. Pre-CR data on demographic characteristics, measures of psychological well-being, and cardiac-specific EA were collected from 915 CR patients, as well as post-CR psychological well-being and EA data, from 800 of these patients. A cross-lagged model was estimated to examine the relationship between EA and psychological well-being among patients with moderately to severely low levels of psychological well-being based on questionnaire scores. Both EA and psychological well-being significantly changed during CR and were negatively associated with each other at both pre- and post-CR. Results from cross-lagged structural equation modeling supported a nonreciprocal association between EA and psychological well-being during CR. Pre-CR assessment of EA in patients showing low levels of well-being at the beginning of CR could help to identify patients at risk for worse psychological outcomes. EA could be a promising target of psychological treatments administered during CR.

The Association Between Cardiac Illness-Related Distress and Partner Support: The Moderating Role of Dyadic Coping.

Managing cardiac illness is not easy because it dramatically disrupts people's daily life and both the patient and his/her spouse are at risk for experiencing distress, which, in turn, may affect the support provided by the partner as caregiver. The partner, in fact, is the main source of support, but his/her support may sometimes be inadequate. In addition, dyadic coping (i.e., the way partners cope together against stress and support each other in times of difficulty) could likely be a moderating factor. The main aim of the present study was to examine the role that dyadic coping (DC, in terms of positive, negative, and common dyadic coping responses) plays in moderating the link between patient and partner cardiac illness-related distress (in terms of anxiety and depression) and partner support (in terms of overprotection, hostility, and partner support for patient engagement). The study included 100 married couples faced with cardiac illness who completed a self-report questionnaire. We analyzed our data in PROCESS using multiple regressions in order to assess the moderating effects of DC responses in the relationship between the couple's cardiac illness-related distress and partner support. With regard to patient distress, results showed that higher levels of patient anxiety and depression were linked with ineffective partner support (i.e., overprotection and hostility). With regard to partner distress, higher levels of partner depression were linked with hostility; higher levels of partner depression and anxiety were associated with less partner support for patient engagement. Moreover, the association between distress and partner support was moderated by the quality of DC. In particular, low positive DC represented a risk factor for both the patient and the partner during a cardiac illness, as low positive DC exacerbated the link between patient and partner distress and less effective partner support styles. Also, higher levels of negative DC were risky for couples: The association between distress and less adequate partner supportive behaviors was stronger in the case of higher negative DC. These results imply a need for psychosocial interventions for couples in cardiac illness, especially for couples lacking relational competences, such as positive dyadic coping.

A Postcard From Italy: Challenges and Psychosocial Resources of Partners Living With and Without a Chronic Disease During COVID-19 Epidemic.

The new Coronavirus (COVID-19) has been declared a global pandemic by the World Health Organization (WHO). The sudden outbreak of this new virus and the measure of lockdown adopted to contain the epidemic have profoundly changed the lifestyles of the Italian population, with an impact on people's quality of life and on their social relationships. In particular, due to forced and prolonged cohabitation, couples may be subject to specific stressors during the epidemic. In addition, living with a chronic health condition may add specific challenges to the ones posed by the epidemic itself. The present cross-sectional study aimed to provide a picture of the challenges as well as the resources for both individual and relational well-being of Italian individuals in a couple relationship (N = 1921), with a specific attention to the comparison between individuals living with and without a chronic disease. Results showed that people with a chronic disease had lower psychological well-being and more fears and worries about the COVID-19. People with a chronic disease perceived fewer resources than healthy people. Moreover, the challenges are shown to be associated with less psychological well-being and high pessimism about the future. Instead individual, relational, and social resources play a protective role during the pandemic for both healthy and chronically ill people.

The Combined Effect of Psychological and Relational Aspects on Cardiac Patient Activation.

The literature assumes that activating patients in the treatment is associated with positive health-related outcomes, such as clinical indicators in the normal range, high medication adherence, and low emergency department utilization. In the cardiac population, patient activation, that is the patient's knowledge, skills, confidence, and behaviors needed for managing one's own health and health care, has been less investigated. In addition, limited attention has been given to the role of the partner as an informal caregiver. However, the patient in the care process is rarely alone, and the partner may play a key role in this process. The goal of this dyadic study (N = 100 heterosexual couples with one partner suffering from an acute cardiac event) is to analyze how individual factors (patients' anxiety, depression, medication adherence, pessimistic perception of illness) and the couple's relationship functioning (e.g., different kinds of partner support and dyadic coping) are associated with patient activation. The results showed that patient activation is not a mere question of age. It is positively related to medication adherence and to the partner's support patient activation. It is negatively correlated with the patient's psychological distress, pessimistic perception of illness, and to the partner's hostility. The need for a dyadic approach to both research and intervention with this population is discussed.