Risk factors associated with nocebo effects: A review of reviews.

Objective: This meta-review aims to identify and categorize the risk factors that are associated with nocebo effects. The nocebo effect can exert a negative impact on treatment outcomes and have detrimental outcomes on health. Learning more about its potential predictors and risk factors is a crucial step to mitigating it. Methods: Literature review studies about the risk factors for nocebo effects were searched through five databases (PubMed, Scopus, The Cochrane Library, PsycINFO, and Embase) and through grey literature. Methodological validity and risk of bias were assessed. We conducted a thematic analysis of the results of the forty-three included reviews. Results: We identified nine categories of risk factors: prior expectations and learning; socio-demographic characteristics; personality and individual differences; neurodegenerative conditions; inflammatory conditions; communication of information and patient-physician relationship; drug characteristics; setting; and self-awareness. We also highlighted the main biochemical and neurophysiological mechanisms underlying nocebo effects. Conclusions: Nocebo effects arise from expectations of adverse symptoms, particularly when triggered by previous negative experiences. A trusting relationship with the treating physician and clear, tailored treatment instructions can act as protective factors against a nocebo effect. Clinical implications are discussed.

The VENERE Study: EffectiVenEss of a Rehabilitation Treatment With Nordic Walking in ObEse or OveRweight Diabetic PatiEnts With Cardiovascular Disease.

Background: Nordic walking (NW) has several potential benefits for individuals with cardiovascular (CV) disease, type 2 diabetes, and obesity and/or overweight. NW improves cardiovascular health, including exercise capacity and blood pressure control. NW enhances glycemic control and insulin sensitivity in diabetes, and aids in weight management and body composition improvement. NW offers additional advantages, such as improvement in muscular strength, joint mobility, physical activity levels, and psychological well-being. Methods: This open-label study with 3 arms will aim to evaluate the efficacy, safety, and adherence to exercise prescription in obese and/or overweight diabetic patients with CV complications. The primary objective will be to assess the CV performance of participants after a 6-month and a 12-month follow-up period, following a 3-month NW intervention, compared with standard rehabilitation, and with cardiological counseling (control group) training lasting 3 months. Results: The results of the study will provide valuable insights into the comparative effectiveness of a NW intervention vs standard rehabilitation and control group training in improving CV performance in obese and/or overweight diabetic patients with CV complications. Additionally, safety and adherence data will help inform the feasibility and sustainability of the exercise prescription over an extended period. Conclusions: These findings may have implications for the development of tailored exercise programs for this specific patient population, with the aim of optimizing CV health outcomes. Clinical Trials Registration: NCT05987410.

Contexte: La marche nordique offre plusieurs bienfaits potentiels aux personnes atteintes d'une maladie cardiovasculaire (CV), de diabète de type 2, de surpoids ou d'obésité. Elle améliore la santé cardiovasculaire, notamment l'endurance à l'effort et la régulation de la pression artérielle, en plus de favoriser l'équilibre glycémique et d'accroître la sensibilité à l'insuline chez les personnes diabétiques. Elle facilite également la gestion du poids et l'amélioration de la composition corporelle. Par ailleurs, la marche nordique présente d'autres avantages, comme l'augmentation de la force musculaire, de la mobilité articulaire, du niveau d'activité physique et du bien-être psychologique. Méthodologie: Cette étude ouverte à 3 groupes vise à évaluer l'efficacité, la sécurité et l'observance des exercices prescrits chez des sujets diabétiques obèses ou en surpoids présentant des complications CV. Le principal objectif consistera à évaluer la performance CV des participants au cours d'une période de suivi de 6 et 12 mois après un programme de marche nordique de 3 mois, comparativement à un programme de réadaptation standard et à un programme d'encadrement en soins CV (groupe témoin) de 3 mois. Résultats: Les résultats de l'étude fourniront de précieux renseignements sur l'efficacité d'un programme de marche rapide comparativement à un programme de réadaptation standard et à un programme d'encadrement (groupe témoin) pour améliorer la performance CV chez des sujets diabétiques obèses ou en surpoids présentant des complications CV. Les données relatives à la sécurité et à l'observance permettront également d'évaluer la faisabilité et la viabilité de la prescription d'exercices sur une longue période. Conclusions: Ces résultats pourraient s'avérer utiles dans l'élaboration de programmes d'exercices spécifiquement conçus pour cette population de patients, afin d'optimiser les résultats en santé CV. Numéro d'inscription de l'essai clinique: NCT05987410.

Italian translation and cultural adaptation of the Agitated Behavior Scale (ABS-I) in patients with acquired brain injuries.

OBJECTIVE: The objective of this study was to produce a cross-cultural adaptation in Italian of the Agitated Behavior Scale (ABS), originally developed in English, as the first of two stages that also include cross-cultural validation and allow a clinical scale to be used in the proper setting such as rehabilitation units. METHODS: In order to adapt the ABS scale to a different cultural environment, five consecutive steps were performed: (1) forward translations (n = 8), (2) synthesis of the 8 forward translations to obtain a first shared italian version (ABS_I_trial), (3) back translations (n = 3), (4) creation of an expert committee to evaluate forward and back translations and finally (5) the cognitive debriefing. RESULTS: After the five steps, including forward translations and back translations, the process of committee verification and judgement and the evaluative step of cognitive debriefing, high comprehensibility of all items was found, resulting in an Italian translation version of ABS suitable for application in a clinical setting. CONCLUSION: ABS translation was produced by means of a standardized procedure aimed at minimizing cross-cultural gaps. The expert committee evaluated the version produced as highly understandable in Italian. Further steps, such as the subsequent validation of its psychometric properties, are needed to employ this translation in a clinical setting.

ERS International Congress 2023: highlights from the Allied Respiratory Professionals Assembly.

This article summarises some of the outstanding sessions that were (co)organised by the Allied Respiratory Professionals Assembly during the 2023 European Respiratory Society International Congress. Two sessions from each Assembly group are outlined, covering the following topics: Group 9.01 focuses on respiratory physiology techniques, specifically on predicted values and reference equations, device development and novel applications of cardiopulmonary exercise tests; Group 9.02 presents an overview of the talks given at the mini-symposium on exercise training, physical activity and self-management at home and outlines some of the best abstracts in respiratory physiotherapy; Group 9.03 highlights the nursing role in global respiratory health and presents nursing interventions and outcomes; and Group 9.04 provides an overview of the best abstracts and recent advances in behavioural science and health psychology. This Highlights article provides valuable insight into the latest scientific data and emerging areas affecting the clinical practice of Allied Respiratory Professionals.

Living beyond loss: a qualitative investigation of caregivers' experiences after the death of their relatives with amyotrophic lateral sclerosis.

BACKGROUND: Caregivers of Amyotrophic Lateral Sclerosis (ALS) patients experience varying psychological responses following the patient's death, including sadness, loneliness, guilt, and a loss of purpose. OBJECTIVES: This research aims to investigate the caregiver journey experienced from the time of diagnosis to the loss of a care recipient, with a specific focus on understanding the factors that contribute to improved coping with bereavement. METHODS: The present study used the Interpretative Phenomenological Approach (IPA) to qualitatively explore the accounts of 41 Italian bereaved caregivers of people affected by ALS (Mean Age = 59.78; Female: 60.98%; Male: 39.02%). RESULTS: Results revealed 5 overarching themes representing 5 macro areas that emerged from the analysis of the interviews ("Caregiver's perception of his/her life", "Caregiver's feelings", "Caregiver's life after patient's death", "Caregiver's disease description", "Caregiver's help resources"), these were further defined based on 12 main themes, which were, in turn, articulated into 30 subthemes. The transition from life before ALS ("a peaceful landscape") to caregiver life (compared to the color "black") was a "shock", during which caregivers had to change their needs. However, life after the person living with ALS' death was both characterized by a sense of "re-birth" and "emptiness", and a general need for "psychological assistance" and "social support". CONCLUSIONS: Results emphasize the need to improve the psychological support offered to caregivers of person living with ALS after the patient's death, tailoring it to the specificity of the condition, to meet their emotional needs, reduce isolation and help them cope with practical challenges and plans.

The Interaction Between Asthma, Emotions, and Expectations in the Time of COVID-19.

Introduction: The main aim was to gain insight into the experience of adult people with a diagnosis of at least 6-months of mild or moderate persistent asthma according to the Global Initiative for Asthma (GINA), and their emotions, beliefs, and expectations during the first wave of COVID-19. Methods: Qualitative semi-structured interviews using the Interpretative Phenomenological Analysis (IPA) were carried out by phone involving 31 people (mean age=58.2; SD=16.2). Interviews were audio recording, transcribed verbatim and analysed through thematic analysis. Results: Five superordinate themes and themes were dedicated to illness (symptoms of asthma; difficulties related to COVID-19), experienced emotions (lockdown period; medical changes; emotions COVID-19 related), beliefs (about asthma; about COVID-19), expectations (related to asthma; related to COVID-19) and behaviours (to protect; risk taken; adherence; contacts with General Practitioners; support). The prevalence of emotions such as fear, worry and anxiety emerged in the participants' narratives. All are accompanied by a preference for action and problem solving. A sense of protection, connection to self and other, and commitment to life were revealed as central concepts for enhancing well-being even at a time of deterring. Discussion: The common threads of the presence of uncertainty and vulnerability open the outlook of a treatment that ensures greater continuity and ownership of care in the patient, preserving the sense of self-efficacy even in times of greater instability.

Illness Perceptions, Cognitions, and Beliefs on COPD Patients' Adherence to Treatment - A Systematic Review.

Background: Chronic Obstructive Pulmonary Disease (COPD) is a chronic inflammatory lung disease characterized by persistent respiratory symptoms and airflow limitation. Besides its irreversibility, COPD is a treatable condition, and patients would strongly benefit from being adherent to their treatments. However, almost half of them are non-adherent, and, according to several recent studies, the way the patient perceives the disease might influence this variable. Aim: This systematic review provided a synthesis of studies about the relationships between illness perceptions (IP), cognitions, beliefs, and adherence in COPD. Methods: English language publications were searched in PubMed, Medline, Scopus, ResearchGate, PsycINFO, and Cochrane Library databases from November 2022 to February 2023, following PRISMA guidelines. The reference lists of eligible studies were also searched. Data extraction and critical appraisal were undertaken by two reviewers working independently. Results: A total of 14 studies were included. Adherence to treatment in COPD is confirmed to be low, using both self-report questionnaires and objective assessment systems. Most studies concluded that COPD is perceived as a moderate threat destined to last forever, even if many participants referred to little disease knowledge. This perception did not change between adherent and non-adherent groups. Those who considered more necessary to take their medicines and had a caregiver were more adherent and less concerned about their future. On the other side, forgetfulness, lack of trust in medications, and difficulties in understanding how to take them were perceived as the main causes of non-adherence. Other predictors of non-adherence, like depression, low self-efficacy, and severity of disease were confirmed. Conclusion: The systematic review highlights the variability of the relationship between IP, cognitions and beliefs, and COPD treatment adherence. A new level of awareness of the relationship between patients' subjective point of view and treatment adherence may inform future treatment options and promote a more personalized intervention.

Acceptance and adherence to non-invasive positive pressure ventilation in people with chronic obstructive pulmonary disease: a grounded theory study.

Introduction: Non-Invasive Positive Pressure Ventilation (NPPV) is an established treatment for people with Chronic Obstructive Pulmonary Disease (COPD), but it is often improperly used or rejected. The patterns of acceptance and adherence to NPPV, conceiving constraints, and strengths related to its adaptation have not been explored from a qualitative perspective yet. Objectives: This study aims to qualitatively explore patterns of adaptation to NPPV in people affected by COPD and to identify the core characteristics and the specific adaptive challenges during the adaptation process. Methods: Forty-two people with moderate or severe COPD were recruited and 336 unstructured interviews were conducted. A Constructivist Grounded Theory was used to gather and analyze data: the transcriptions were mutually gathered in open, selective, and theoretical phases, with open, selective, and theoretical coding, respectively. Results: The analysis resulted in a non-linear and dynamic process, characterized by three phases: deciding, trying NPPV, and using NPPV. The patterns revealed that positive and negative NPPV experiences, together with beliefs, emotions, stressful mental states, and behaviors result in different acceptance and adherence rates. Discussions: These findings may be helpful to implement new care strategies to promote acceptance and adherence to NPPV.

ERS International Congress 2022: highlights from the Allied Respiratory Professionals Assembly.

In this article, we provide a brief overview of some of the outstanding sessions that were (co)organised by the Allied Respiratory Professionals Assembly during the 2022 European Respiratory Society International Congress, which was held in a hybrid format. Early Career Members from Assembly 9 summarised the content of the sessions, with the support of the Officers from the four Assembly groups: Respiratory Function Technologists and Scientists (Group 9.01); Physiotherapists (Group 9.02); Nurses (Group 9.03); and Psychologists and Behavioural Scientists (Group 9.04). The sessions covered the following topics: recent advances in cardiopulmonary exercise and challenge testing; the role and new trends in physiotherapy, exercise and physical activity promotion interventions in chronic respiratory diseases; development of the international curriculum for respiratory nurses and nursing aspects in disease management; and treatment adherence, e-health interventions and post-coronavirus disease 2019 challenges. This Highlights article targets delegates who attended the Congress sessions, as well as those who were unable to attend, and provides valuable insight into the latest scientific data and emerging areas affecting the clinical practice of Allied Respiratory Professionals.

Life Experiences in Neuromuscular Tracheotomized Patients in Times of Covid-19.

BACKGROUND: The management of tracheotomy at home can be very complex, affecting the patient's quality of life. OBJECTIVES: This case series study aimed to explore the experiences of patients affected by neuromuscular diseases (NMD) concerning tracheostomy and Invasive Mechanical Ventilation (IMV) management at home during the COVID-19 health emergency in Italy. METHODS: Semi-structured interviews and the following instruments were used: Connor and Davidson Resilience Scale (CD-RISC-25); Acceptance and Action Questionnaire-II (AAQ-II); State-Trait Anxiety Inventory (STAI); Langer Mindfulness Scale (LMS). Descriptive analyses, correlations, and qualitative analyses were carried out. RESULTS: 22 patients [50% female, mean age = 50.2 (SD = 21.2)] participated in the study. Participants who showed high levels of dispositional mindfulness in terms of novelty-seeking (r = 0.736, p = 0.013) and novelty production (r = 0.644, p = 0.033) were those with higher resilience. The main emotion that emerged was the fear of contagion (19 patients, 86.36%), due to the previous fragile condition, leading to a significant sense of abandonment. The tracheostomy's perception is seen in extremes as a lifesaver or a condemnation. The relationship with the health professionals moves from satisfaction to a feeling of abandonment with a lack of preparation. CONCLUSIONS: The relationship between resilience, flexibility, state anxiety and dispositional mindfulness offers ways to reinforce tracheostomy management at home, even in critical periods when going to the hospital may be difficult.

Is Intermittent Abdominal Pressure Ventilation Still Relevant? A Multicenter Retrospective Pilot Study.

Non-invasive ventilatory support (NVS) is a technique used to reduce respiratory work in neuromuscular diseases, preventing the progression of respiratory failure. NVS is usually administered via a nasal or an oronasal mask, causing discomfort, especially in patients ventilated for more than 16 h/day. Intermittent abdominal pressure ventilation (IAPV) differs completely from conventional NVS and consists of a portable ventilator and a corset with Velcro closures as the interface. In our study, the practicability and efficacy of IAPV were studied in three Italian centers monitoring 28 neuromuscular patients using IAPV who were then retrospectively analyzed. The primary outcomes were an improvement in hypoxemia and the normalization of hypercapnia, and the secondary outcome was an improvement in quality of life. Data were collected at baseline (T0) and after two hours of ventilation (T1), with follow-ups at three months (T2) and six months (T3). Statistical significance was found for PaCO2 over time (F (2.42) = 7.63, p = 0.001) and PaO2 (W = 0.539, p = 0.033). The time of NVS usage also significantly affected the quality of life (F (2.14) = 6.90, p = 0.010), as seen when comparing T0 and T3. As an alternative ventilation method, IAPV is still relevant today and could become a key part of daytime support, especially for patients who do not tolerate standard daytime NVS with an oral interface.

Nonpharmacological management of psychological distress in people with COPD.

Psychological distress is prevalent in people with COPD and relates to a worse course of disease. It often remains unrecognised and untreated, intensifying the burden on patients, carers and healthcare systems. Nonpharmacological management strategies have been suggested as important elements to manage psychological distress in COPD. Therefore, this review presents instruments for detecting psychological distress in COPD and provides an overview of available nonpharmacological management strategies together with available scientific evidence for their presumed benefits in COPD. Several instruments are available for detecting psychological distress in COPD, including simple questions, questionnaires and clinical diagnostic interviews, but their implementation in clinical practice is limited and heterogeneous. Moreover, various nonpharmacological management options are available for COPD, ranging from specific cognitive behavioural therapy (CBT) to multi-component pulmonary rehabilitation (PR) programmes. These interventions vary substantially in their specific content, intensity and duration across studies. Similarly, available evidence regarding their efficacy varies significantly, with the strongest evidence currently for CBT or PR. Further randomised controlled trials are needed with larger, culturally diverse samples and long-term follow-ups. Moreover, effective nonpharmacological interventions should be implemented more in the clinical routine. Respective barriers for patients, caregivers, clinicians, healthcare systems and research need to be overcome.

Caregivers of Neuromuscular Patients Living with Tracheostomy during COVID-19 Pandemic: Their Experience.

Background: During a pandemic, tracheostomy management in neuromuscular disease (NMD) patients can be complex. Methods: Using a multicentre, multiple case study approach, we sought perspectives through semi-structured interviews via hybrid quali-quantitative analysis. The qualitative analysis involved a semi-structured interview and the quantitative analysis the completion of a battery of questionnaires. Aim: To investigate the caregivers' experiences, burden and beliefs regarding tracheostomy during the Italian COVID-19 pandemic. The following instruments were administered: Connor and Davidson Resilience Scale (CD-RISC-25); Acceptance and Action Questionnaire-II (AAQ-II); State-Trait Anxiety Inventory (STAI); Langer Mindfulness Scale (LMS); Zarit Burden Interview (ZBI). Results: Fifty-three caregivers (62.3% female, mean age 52.2 (SD = 18.2)) participated in the study. The more resilient the carers, the more they were psychologically flexible (r = 0.380, p = 0.014) and able to cope adaptively with the emergency (r = 0.378, p < 0.006). Similarly, perceived control was higher the more resilient they were (r = 0.897, p < 0.001). The main emotions emerging were isolation and loneliness (15; 34.88%). The perception of tracheostomy meant that it could be seen as a lifesaver or as a condemnation. Similarly, the relationship with health professionals moves from satisfaction to a feeling of abandonment over the course of the pandemic. Conclusions: These findings offer a unique opportunity to understand the point of view of caregivers of NMD patients living with tracheotomy during the COVID-19 pandemic, when going to the hospital may have been hampered.

Placebo and Nocebo Effects as Bayesian-Brain Phenomena: The Overlooked Role of Likelihood and Attention.

The Bayesian-brain framework applied to placebo responses and other mind-body interactions suggests that the effects on the body result from the interaction between priors, such as expectations and learning, and likelihood, such as somatosensorial information. Significant research in this area focuses on the role of the priors, but the relevance of the likelihood has been surprisingly overlooked. One way of manipulating the relevance of the likelihood is by paying attention to sensorial information. We suggest that attention can influence both precision and position (i.e., the relative distance from the priors) of the likelihood by focusing on specific components of the somatosensorial information. Two forms of attention seem particularly relevant in this framework: mindful attention and selective attention. Attention has the potential to be considered a "major player" in placebo/nocebo research, together with expectations and learning. In terms of application, relying on attentional strategies as "amplifiers" or "silencers" of sensorial information could lead to an active involvement of individuals in shaping their care process and health. In this contribution, we discuss the theoretical implications of these intuitions with the aim to provide a comprehensive framework that includes Bayesian brain, placebo/nocebo effects, and the role of attention in mind-body interactions.

The Role of Depression on Treatment Adherence in Patients with Heart Failure-a Systematic Review of the Literature.

INTRODUCTION: Although poor medication adherence is considered an impacting risk factor for worsening heart failure (HF) outcomes, adherence rates in HF patients continue to be considerably low. To improve this condition, several studies investigated the impact of many determinants on medication adherence; however, few authors explored the role of depression on it. PURPOSE OF REVIEW: The purpose of this systematic review was to explore the association between depressive symptoms and medication adherence in HF patients. In particular, the research question was is depression a barrier to medication adherence in HF patients? METHODS: A systematic review of quantitative analysis studies was undertaken. Six electronic databases were searched between the end of October and March 2022. Thirty-one trials were included, all of them assessed depression, adherence to medication, and their possible relationship. RESULTS: As was intended, findings showed that the impact of a mild to moderate level of depression was significant on adherence to treatment in HF patients. However, many other risk factors emerged, like family support and health practices (es. low sodium diet). CONCLUSION: The detection of depression in the setting of HF should be crucial to HF patients' physical health and quality of life. Future research should take depression into account, exploring this area through self-report and qualitative interview as well.

Efficacy of Nasal High-Flow Oxygen Therapy in Chronic Obstructive Pulmonary Disease Patients in Long-Term Oxygen and Nocturnal Non-Invasive Ventilation during Exercise Training.

High-flow oxygen therapy (HFOT) improves gas exchange and dead space washout and reduces the level of work required for breathing. This study aimed to evaluate pulmonary rehabilitation (PR) combined with HFOT in COPD patients treated with nocturnal non-invasive ventilation (NIV) and long-term oxygen therapy (LTOT). In particular, we sought to discover whether the addition of HFOT during exercise training could improve patients' performance, mainly with regard to their Six-Minute Walking Test (6MWT) outcomes, and reduce the exacerbation rates, periods of rehospitalization or need to resort to unscheduled visits. Thirty-one COPD subjects (13 female) who used nocturnal NIV were included in a randomized controlled trial and allocated to one of two groups: the experimental group (EG), with 15 subjects, subjected to PR with HFOT; and the control group (CG), with 16 subjects, subjected to PR without HFOT. The primary outcome of the study was the observation of changes in the 6MWT. The secondary outcome of the study was related to the rate of exacerbation and hospitalization. Data were collected at baseline and after one, two and three cycles of cycle-ergometer exercise training performed in 20 supervised sessions of 40 min thrice per week, with a washout period of 3 months between each rehabilitation cycle. Statistical significance was not found for the 6MWT distance (W = 0.974; p = 0.672) at the last follow-up, but statistical significance was found for the Borg scale in regard to dyspnea (W = 2.50; p < 0.001) and fatigue (W = 2.00; p < 0.001). HFOT may offer a positive option for dyspnea-affected COPD patients in the context of LTOT and nocturnal NIV.

Home-Based Adaptation to Night-Time Non-Invasive Ventilation in Patients with Amyotrophic Lateral Sclerosis: A Randomized Controlled Trial.

BACKGROUND: Initiation to Non-Invasive Ventilation (NIV) in amyotrophic lateral sclerosis (ALS) can be implemented in an inpatient or outpatient setting. AIMS: We aimed to evaluate the efficacy of adaptation (the number of needed sessions) to home-based NIV compared to an outpatient one in ALS in terms of arterial carbon dioxide (PaCO2) improvement. NIV acceptance (mean use of ≥5 h NIV per night for three consecutive nights during the adaptation trial), adherence (night-time NIV usage for ≥150 h/month), quality of life (QoL), and caregiver burden were secondary outcomes. METHODS: A total of 66 ALS patients with indications for NIV were involved in this randomized controlled trial (RCT): 34 underwent NIV initiation at home (home adaptation, HA) and 32 at multiple outpatient visits (outpatient adaptation, OA). Respiratory function tests were performed at baseline (the time of starting the NIV, T0) together with blood gas analysis, which was repeated at the end of adaptation (T1) and 2 (T2) and 6 (T3) months after T1. NIV adherence was measured at T2 and T3. Overnight cardiorespiratory polygraphy, Short Form Health Survey (SF-36), Caregiver Burden Inventory (CBI), Caregiver Burden Scale (CBS), and Zarit Burden Interview (ZBI) were performed at T0, T2, and T3. RESULTS: Fifty-eight participants completed the study. No differences were found between groups in PaCO2 at T1 (p = 0.46), T2 (p = 0.50), and T3 (p = 0.34) in acceptance (p = 0.55) and adherence to NIV at T2 and T3 (p = 0.60 and p = 0.75, respectively). At T2, the patients' QoL, assessed with SF-36, was significantly better in HA than in OA (p = 0.01), but this improvement was not maintained until T3 (p = 0.17). CONCLUSIONS: In ALS, adaptation to NIV in the patient's home is as effective as that performed in an outpatient setting regarding PaCO2, acceptance, and adherence, which emphasizes the need for further studies to understand the role of the environment concerning NIV adherence.

Psychoeducational groups for people with Amyotrophic Lateral Sclerosis and their caregiver: a qualitative study.

OBJECTIVE: The current study aimed to describe the implementation of a structured psychoeducational intervention in Amyotrophic Lateral Sclerosis (ALS), identifying the needs of both patients and their caregivers. METHODS: Five patients and thirteen caregivers attended eight psychoeducational group meetings at the Respiratory Rehabilitation Unit of IRCCS Santa Maria Nascente of Fondazione Don Carlo Gnocchi, Milan (Italy) and eight participants underwent semi-structured interviews once the group sessions ended. Group sessions and semi-structured interviews were audio-recorded and transcribed verbatim. Then, data obtained by group meetings' transcripts have been analysed using the grounded theory (GT) paradigm, while those obtained by interviews have been analysed using the interpretative phenomenological analysis (IPA). RESULTS: The analysis of the meetings allowed us to identify seven main themes: "practical advice", "explanation of the pathology", "recognition of emotions", "adaptation", "family and relationships", "being caregiver of oneself", and "sharing". Twenty-one sub-themes also emerged from the transcripts' analysis. The analysis of the interviews allowed us to deduce the main reasons to participate (i.e., to have information and to be able to share experiences), the positive and negative aspects of the experiences. These results suggested the usefulness of psychoeducational groups in the regular clinical practise to allow patients and caregivers to share advice, emotions, and experiences with others in the same situation. CONCLUSIONS: This study displays the utility of psychoeducational group intervention in supporting people with ALS and their caregivers because of two main reasons: first for the psychoeducation provided by professionals; second for the possibility of sharing experiences and emotions with people in the same situation.