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Many practicing physicians struggle to properly evaluate clinical research studies - they either simply do not know them, regard the reported findings as 'truth' since they were reported in a 'reputable' journal and blindly implement these interventions, or they disregard them as having little pragmatic impact or relevance to their daily clinical work. Three aspects for the latter are highlighted: study populations rarely reflect their practice population, the absolute average benefits on specific outcomes in most controlled studies, while statistically significant, are so small that they are pragmatically irrelevant, and overall mortality between the intervention and control groups are unaffected. These observations underscore the need to rethink our research approaches in the clinical context - moving from the predominant reductionist to an eco-systemic research approach will lead to knowledge better suited to clinical decision-making for an individual patient as it takes into account the complex interplay of multi-level variables that impact health outcomes in the real-world setting.
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STUDY AIMS: Despite being mentioned in well-known models of psychotherapeutic change, the concept of extra-therapeutic factors seems to have left the scene across time, eaten away by the progressive refinement of the construct of common factors. Aim of the present study is to better understanding the historical evolution of the concept of extra-therapeutic factors and its importance for psychotherapy today. METHODS: This is a position paper based on a literature review on extra-therapeutic factors and psychotherapy outcome and process. DISCUSSION: There is growing evidence of the decisive role of clients' and therapists' characteristics, as well as of the importance of therapeutic alliances and relationships in promoting change. Within this context, the concept of extra-therapeutic factors still deserves proper attention, rather than being relegated to a residual and vanishing category. CONCLUSION: A renewed interest on extra-therapeutic factors could reinvigorate the debate over the relationship between psychotherapy and life contexts and conditions. In terms of complexity and systems thinking nothing, a priori, really falls outside the realm of psychotherapy and, in turn, psychotherapy is not a practice that could be abstracted from the context in which it is practiced or from clients' and therapists' lives.
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BACKGROUND: The field of psychotherapy is witnessing a lively debate today. The literature on the efficacy of psychological interventions has grown exponentially, but the assumptions of the prevailing research paradigms have been criticised from many points of view. One of the main concerns is that of a too often simplistic conception of psychotherapy, viewed as a set of specific methods for the treatment of point-like problems or symptoms. LITERATURE REVIEW ON MENTAL HEALTH AND THE ECOLOGICAL CONTEXT: Instead, emerging perspectives are trying to promote a more complex view on psychotherapy, as a process based on the therapeutic potential of relationships, which takes place in relevant social and cultural contexts. Even the ecological context is taken in greater consideration, as growing evidence exists about the detrimental effects of ecological threats-such as climate change and other environmental challenges-on mental health. CONCLUSIONS: Psychotherapists and psychotherapy associations are now paying due attention to such issues, as well as to social justice and other dimensions that no longer can be thought of as mere elements of the scenario in which psychotherapy is practiced. Rather they are dimensions that exert a strong influence on psychological well-being, and thus must be properly acknowledged and assessed to connect clinical work with the communities and ecological contexts in which people live.
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STUDY AIMS: The present paper aimed at discussing how the process of decision-making should be taken care of in healthcare services. METHODS: This is a position paper based on a review of the relevant literature about meaning-making processes in medical encounters and psychotherapy. DISCUSSION: Authors argued that choice options could be perceived as meaningful by patients if their uncertainties were taken into account and grounded on mutual understanding and reciprocal trust. To this end, any decision-making process should satisfy the patient's legitimate expectations by making choices and habits compatible. CONCLUSION: In depht analysis of meaning-making processes is crucial for better refining good practices of shared decision-making.
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BACKGROUND: Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), causes increasing physical impairment and disability. People with ALS/MND face huge physical challenges, and the diagnosis can be a source of great psychological distress for both people with ALS/MND and their carers. In such a context, how news of the diagnosis is broken is important. At present, there are no systematic reviews of methods for informing people with ALS/MND of their diagnosis. OBJECTIVES: To examine the effects and effectiveness of different methods for informing people of a diagnosis of amyotrophic lateral sclerosis/motor neuron disease (ALS/MND), including effects on the person's knowledge and understanding of their disease, its treatment, and care; and on coping and adjustment to the effects of ALS/MND, its treatment, and care. SEARCH METHODS: We searched the Neuromuscular Specialised Register, CENTRAL, MEDLINE, Embase, PsycINFO, and two trials registers (February 2022). We contacted individuals or organisations to locate studies. We contacted study authors to obtain additional unpublished data. SELECTION CRITERIA: We planned to include randomised controlled trials (RCTs) and quasi-RCTs of techniques for informing people with ALS/MND of their diagnosis. We planned to include adults (aged 17 years or over) with ALS/MND, according to the El Escorial criteria. DATA COLLECTION AND ANALYSIS: Three review authors independently reviewed the results of the search to identify RCTs, and three review authors identified non-randomised studies to include in the discussion section. We planned that two review authors would independently extract data, and three would assess the risk of bias in any included trials. MAIN RESULTS: We did not identify any RCTs that met our inclusion criteria. AUTHORS' CONCLUSIONS: There are no RCTs that evaluate different communication strategies for breaking the bad news for people diagnosed with ALS/MND. Focused research studies are needed to assess the effectiveness and efficacy of different communication methods.
Subject(s)
Amyotrophic Lateral Sclerosis , Motor Neuron Disease , Adult , Humans , Motor Neuron Disease/psychology , Motor Neuron Disease/therapyABSTRACT
STUDY AIMS: The article aims at reiterating the importance of a biopsychosocial approach to mental health, taking stock of the critiques that have been raised and moving forward throughout a reconsideration of the theoretical background of systems thinking and emphasizing the relevance of the concept of thick description for the promotion of an adequate reflection on methodology and case formulation. LITERATURE REVIEW: It is our opinion that the biopsychosocial approach is still a powerful framework for making sense of the growing data collected in the different fields related to mental health and for designing proper treatment plans. A crucial challenge for mental health is that of surpassing the dichotomies and ideological disputes that still contaminate the field with detrimental effects on the advancement of knowledge and on the integration and continuity of different kind of interventions. CONCLUSIONS: The time is ripe for building bridges among neuroscience, humanities and social sciences, and this can only happen within the umbrella of a biopsychosocial perspective reinstated into its systems thinking background.
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BACKGROUND: While the COVID-19 pandemic was spreading worldwide, the Italian government stated lockdown, with a drastic reorganization of healthcare systems. The psychological and social effects of the pandemic and the restrictions of freedom could have had a detrimental impact on people with physical disabilities, for whom well-being depends strongly on their social environment. AIM: Our main aim was to describe the overall impact of the pandemic on mental health, social condition and illness perception among patients with disabilities, to provide early interventions for this particularly vulnerable population. For this purpose, we performed a specific screening protocol to detect the prevalence of any psychological distress. DESIGN: Cross-sectional observational study. SETTING: Telephonic interview administered to patients and their caregivers attending the Unit of Neurorehabilitation at the University Hospital of Pisa. POPULATION: 134 patients with physical disability related to neurological disorders, who had their outpatient appointment cancelled, because of the government dispositions, were enrolled. METHODS: A specific questionnaire (COVID19-q) was designed to test patients' psycho-social state, including a section addressed to the caregiver. Moreover, a standardized psychological evaluation, using the Clinical Outcomes in Routine Evaluation-Outcome Measure (CORE-OM), was also performed. RESULTS: Results show a different impact in our study population compared to the general population on psychological aspect. Patients did not manifest any clinically relevant distress, as assessed with CORE-OM. However, patients with higher disability degree reported a statistically lower outcome in the social function, in the well-being domains and an increase in risk behavior. Results from COVID19-q show that most of our patients reported none or mild change in their psycho-social habits and perception of illness during lockdown. However, reduction of family cohesion and lack of healthcare support are two important aspects that people with disability had to face with during the pandemic emergency. CONCLUSIONS: People with physical disabilities surprisingly shown milder effects of the pandemic on their psychological state and good coping skills in facing social isolation, manifesting resilience resources. However, the is a need to give concrete support to healthcare and social care, especially in the management of severe disability. CLINICAL REHABILITATION IMPACT: This unexpected and reassuring result may reveal a worrying scenario regarding-the social participation and quality of life of people with disabilities: were they already in lockdown?
Subject(s)
Attitude to Health , COVID-19/prevention & control , Disabled Persons/psychology , Pandemics , Physical Distancing , SARS-CoV-2 , Aged , Cross-Sectional Studies , Female , Humans , Italy/epidemiology , Male , Middle Aged , Surveys and QuestionnairesABSTRACT
RATIONALE, AIMS, AND OBJECTIVES: Clinical and research evidence suggests that family functioning is an important variable in shaping psychological well-being, despite being often overlooked in the prevailing approaches to mental health. The aim of the present study is to examine the associations between psychological distress and family functioning in a sample of patients accessing a public mental health service. METHOD: CORE-OM and FACES IV questionnaires were administered to 112 patients, and all the correlations between the scales and subscales were calculated. Descriptive statistics concerning family typologies and satisfaction with family communication or relationships were also evaluated. RESULTS: The results showed significant associations between family functioning and psychological well-being. Positive aspects of family functioning, such as balanced cohesion and flexibility, were associated with lower distress, while negative aspects such as disengagement were associated with poorer mental health. According to the Circumplex model, most of the families were described as balanced in their functioning; however, the communication and family satisfaction scores revealed that many patients had concerns about their family relationships. CONCLUSIONS: This study confirms that family functioning is significantly associated with psychological distress, also in the absence of clear and conspicuous signs of structural imbalances within family relationships.
Subject(s)
Mental Health , Psychological Distress , Adaptation, Psychological , Family , Family Relations , Humans , Outpatients , Stress, Psychological/epidemiology , Surveys and QuestionnairesABSTRACT
Aim of this study is to examine caregiver burden and family functioning in different neurological conditions. Forty-two primary caregivers of patients with Amyotrophic Lateral Sclerosis (ALS), Alzheimer's Disease and other dementia (AD), Parkinson's Disease (PD), Acquired Brain Injuries (ABI) and Multiple Sclerosis (MS) were administered scales for the evaluation of caregiver burden (CBI) and family functioning (FACES IV). Caregiver burden was overall high, with caregivers of patients with ALS and ABI having exceeded the CBI cut-off score for possible burn-out. The average scores of caregivers of patients with AD or other dementia and PD were close to the cut-off score, whereas those of caregivers of patients with MS were significantly lower than the others. Family cohesion, family satisfaction and the quality of family communication were associated with reduced levels of caregiver burden, whereas disengagement was associated with a higher burden. The data from the present study confirm that caregiver burden is a relevant issue in the context of neurological diseases, especially for those causing higher degrees of impairment. Significant correlations with family functioning emerged as well, highlighting the importance of studying and treating caregiver burden within the context of family relations.
Subject(s)
Amyotrophic Lateral Sclerosis/nursing , Brain Injuries/nursing , Caregivers , Cost of Illness , Dementia/nursing , Family , Multiple Sclerosis/nursing , Parkinson Disease/nursing , Adult , Aged , Aged, 80 and over , Alzheimer Disease/nursing , Female , Humans , Male , Middle AgedABSTRACT
In the field of sleep disorders, the quality of couple relationship is arousing increasing attention, given its implications for quality of life and treatment adherence. The aim of the present study was to evaluate relationship quality in a sample of treated or untreated patients with Obstructive Sleep Apnoea Syndrome. Eighty-seven patients were recruited in a hospital-based Centre for Sleep Medicine. Subjects were administered the Dyadic Adjustment Scale (DAS) to evaluate relationship quality, and the Epworth Sleepiness Scale (ESS). Apnoea-hypopnoea indexes (AHI) were collected through nocturnal polysomnography or home testing with a portable monitoring device. Although the DAS average scores were similar to local normative values, relationship quality was significantly lower in the untreated patients when compared with the ones treated. The ESS scores showed a negative correlation with many DAS scores, whereas no significant correlation emerged for AHI. Such data suggest a significant impact of perceived sleep apnoea symptoms on marital satisfaction, even though in the absence of striking differences between the whole sample and the general population.
Subject(s)
Marriage , Quality of Life/psychology , Sleep Apnea, Obstructive/psychology , Adult , Aged , Continuous Positive Airway Pressure/psychology , Disorders of Excessive Somnolence/psychology , Disorders of Excessive Somnolence/therapy , Female , Humans , Male , Middle Aged , Polysomnography , Psychometrics/statistics & numerical data , Sleep Apnea, Obstructive/therapy , Surveys and QuestionnairesABSTRACT
The aims of the present study are to evaluate the impact of insomnia on psychological well-being and to examine the associations of insomnia and psychological well-being with anxiety and depression. Forty-one patients attending our hospital-based Centre for sleep medicine were administered scales for the evaluation of insomnia (ISI), anxiety (STAI-Y), depression (BDI-II) and psychological well-being (PWB). The scores were compared to those of a control group of 68 subjects attending the hospital for routine examinations or as accompanying persons. Significant differences between patients and controls were detected for anxiety and depression, as well as for psychological well-being. Even if subclinical on average, anxiety and depression symptoms were significantly related to poor psychological well-being, whereas insomnia per se was not. These findings suggest that patients with insomnia report a relevant impact on their psychological well-being, and that such an impact seems to be strongly associated with concomitant subthreshold symptoms of anxiety and depression. The implications for diagnosis and treatment are discussed.
Subject(s)
Anxiety/epidemiology , Depression/epidemiology , Sleep Initiation and Maintenance Disorders/psychology , Adult , Aged , Case-Control Studies , Female , Humans , Male , Middle Aged , Young AdultABSTRACT
Severe brain injuries have long-term consequences on functional status and psychosocial functioning. Family life can be greatly influenced as well, and features of high caregiver burden can emerge. Although the data on caregivers' distress are constantly increasing, less information is available about the role of family functioning. Thirty caregivers of hospitalised patients with severe brain injuries received questionnaires for the evaluation of caregiver burden, family functioning and perceived social support. A semi-structured interview was performed for the evaluation of quality of life. Family cohesion and adaptability positively correlated with caregivers' quality of life and perceived social support. Partner caregivers' scores were significantly higher on the time-dependent burden than those of sons and daughters, whereas the latter scored higher on the emotional burden.
Subject(s)
Brain Injuries/nursing , Caregivers/psychology , Cost of Illness , Family/psychology , Quality of Life/psychology , Social Support , Adult , Aged , Female , Humans , Male , Middle AgedABSTRACT
Menopause in the female life cycle is a special period due to important hormonal, physical and psychological changes. Sleep disruption represents a common complaint for midlife and menopausal women, related to primary sleep disorders, including insomnia, sleep disordered breathing, restless legs syndrome (RLS), mood and anxiety disorder, other medical illness, hormonal-related vasomotor symptoms, and aging per se. Aims of our study were to evaluate the prevalence of sleep disorders in a sample of pre and post menopausal women, and to investigate the relationship between sleep and other medical disorders, and life habits. Among workers in the six participant centers, we enrolled 334 women, aged between 40 and 60 years, that completed a questionnaire that included screening on menarche, menstrual cycle, fertility, parity, menopause, life habits, personal medical and sleep history and related treatment, and self-administered scales for sleep quality (PSQI), excessive daytime sleepiness [Epworth Sleepiness Scale (ESS)], mood disorder [Beck Depression Inventory (BDI)], Berlin Questionnaire for sleep disordered breathing (SDB), IRLS diagnostic interview and Rating Scale. Menopausal and perimenopausal women showed an increased prevalence of poor sleep, high risk of SDB, and mood disorder; menopausal women also reported increased RLS severity. Mood disorder had a significant impact on night sleep measures and excessive daytime sleepiness, as well as on RLS severity, and had a greater prevalence in hypertensive women. Sleep disturbances are frequent in menopausal women. Their aetiology is unclear, but probably multifactorial, and many factors contribute to the sleep disruption. Our data suggest the importance of correctly investigate and address sleep problems associated with menopause, through sleep history, and a sleep study could be obtained if clinically warranted. Pharmacological and behavioural treatment strategies should then be aimed at improving sleep and life quality in perimenopausal and menopausal women.
Subject(s)
Menopause , Sleep Wake Disorders/epidemiology , Adult , Female , Humans , Middle AgedABSTRACT
Amyotrophic lateral sclerosis is a neurodegenerative disease that affects the motor neurons and causes progressive physical impairment. Also, other functions, such as breathing, swallowing and speech are compromised, and the loss of independence makes caregiver burden extremely high. The present study aimed at evaluating the differences in the caregiver burden due to age, gender and kinship. Women reported a higher physical and social burden than men, and partners scored higher in several dimensions of the caregiver burden when compared to sons and daughters. With respect to adult child caregivers, daughters reported higher levels of developmental burden than sons. Age has a significant impact on the caregiver burden, especially for the time dedicated to assistance and physical burden; disease severity is significantly related to the physical burden as well, and also with the developmental burden.
Subject(s)
Amyotrophic Lateral Sclerosis/therapy , Caregivers , Cost of Illness , Family Relations , Adult , Age Factors , Caregivers/psychology , Female , Humans , Male , Middle Aged , Sex FactorsABSTRACT
BACKGROUND: While the positive effects of rehabilitation on physical functioning are well documented in stroke literature, more controversial results arise from the evaluation of the impact on quality of life. OBJECTIVE: The aim of the present study is to examine the associations among functional status and different measures of quality of life in a sample of inpatients undergoing rehabilitation programmes, and to consider the role of psychological distress, coping strategies and social support. METHODS: Twenty-nine stroke survivors were evaluated at the admission to a hospital-based Rehabilitation Unit and just before discharge. Questionnaires for the evaluation of functional status, health-related QoL, individualised QoL, psychological distress, coping strategies and social support were administered to them. RESULTS: While functional status improves significantly after treatment, individualised evaluations of QoL seem to be less affected. Adaptive coping strategies and social support showed significant correlations with positive outcomes on specific QoL domains, whereas psychological distress was associated with negative outcomes. CONCLUSIONS: The data from the present study support the evidence that different measures of QoL and functional status are not strongly associated one another, and that psychological distress, coping strategies and social support can be significantly related to specific outcome measures.
Subject(s)
Hospitalization , Quality of Life/psychology , Recovery of Function , Stroke Rehabilitation , Stroke/psychology , Survivors/psychology , Adaptation, Psychological , Adult , Aged , Female , Hospitalization/trends , Humans , Longitudinal Studies , Male , Middle Aged , Patient Discharge/trends , Social Support , Surveys and QuestionnairesABSTRACT
Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease that has a strong impact on the lives of the people affected and on their close relatives, who have to tackle the demanding duties of caring for and assisting them. Family life can be profoundly influenced by this disease, and evaluating how the relevant parameters of family functioning relate to the markers of psychological adjustment of patients and caregivers is an important research objective, with implications for clinical practice. We examined the associations of family cohesion and adaptability (FACES III) with patients' coping strategies (MND Coping Scale) and caregivers' burden (CBI) in a longitudinal study with a sample of 19 pairs of patients with ALS and primary caregivers. The results showed a tendency toward patterns of extreme family functioning, with increasing levels of cohesion and adaptability, especially in the ideal versions of family functioning. Such high levels of cohesion and adaptability were correlated with positive markers of adjustment, especially in terms of the adaptive coping strategies of patients. Increasing and extreme levels of both cohesion and adaptability seem to be expected and even adaptive in the case of a progressive and impairing disease like ALS. Methodological concerns regarding the operationalization of family functioning constructs are also discussed.
Subject(s)
Adaptation, Psychological , Amyotrophic Lateral Sclerosis/psychology , Caregivers/psychology , Depression/epidemiology , Quality of Life/psychology , Social Support , Adolescent , Adult , Amyotrophic Lateral Sclerosis/complications , Depression/psychology , Family Relations , Female , Humans , Longitudinal Studies , Male , Middle Aged , Surveys and Questionnaires , Young AdultABSTRACT
Amyotrophic lateral sclerosis (ALS) makes a strong psychological impact, and the study of efforts by patients to cope with the course of the disease could be an important first step in the optimisation of care treatment. With this aim, in our study we assessed the coping strategies by a population of ALS patients, according to some clinical parameters and the worsening of the disease. We have administered the MND coping scale to 62 patients, firstly at the admission to our neurorehabilitation unit and secondly after 1year. Each factor score has been related to age and progression of the disease, and comparisons between males and females have also been made. The increasing relevance of seeking support from families and technological devices is probably the most interesting finding: such a result stimulates remarkable considerations about the proper balance between such support and patients' autonomy. As a whole, data confirm the importance of a proper and well-timed psychological intervention for patients and their families. In detail, improving adaptive coping strategies, together with sustaining those which tend to weaken along the progression of the disease, could be an important goal in psychological counselling for both patients and family members.
Subject(s)
Adaptation, Psychological , Amyotrophic Lateral Sclerosis/psychology , Gastrostomy/psychology , Personal Autonomy , Social Support , Age Factors , Disease Progression , Female , Humans , Male , Middle Aged , Respiration, Artificial/psychology , Sex Characteristics , Surveys and QuestionnairesABSTRACT
The aim of this study is to evaluate the correlation between different measures of quality of life (QoL), functional status and mood status in patients with amyotrophic lateral sclerosis (ALS). A sample of 40 patients with ALS was recruited and scales for the evaluation of health-related QoL (SF36), patient-centered QoL (SEIQoL), functional status (ALSFRS) and depression (ZDS) have been administered to them. All the correlations (Pearson's r) between the scores have been considered and the t-test was performed in order to compare male with female patients. No correlation emerged between the different measures of QoL and functional status, apart from the scores of the Physical Functioning subscale of the SF36 which resulted positively correlated (p < 0.01) with those of the ALSFRS. Mood status resulted negatively correlated with many aspects of health-related QoL but not with patient-centred QoL. Data suggest that the relationship between functional status and different domains of QoL in this population of patients with a severely compromising disease is not linear and that the satisfaction with life of the patients themselves is not strongly related to the level of physical impairment.