Psychosocial resources and psychopathology among persons with neuromuscular disorders during the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic substantially affected the lives of persons with inherited neuromuscular disorders (INMD), causing disruption in clinical and support services. While several studies have investigated mental health, distress and psychosocial resources in the general population during the pandemic, little is known about the experience of persons with INMD. METHODS: This study was aimed to fill this gap by jointly investigating both psychopathological symptoms and psychosocial resources - specifically, resilience and perceived social support - among persons with INMD during the pandemic, taking into account demographic and clinical factors. Between April and December 2020, 59 participants with INMD (aged 15-59, 71.2% M) completed a questionnaire collecting demographic and clinical data, the Multidimensional Scale of Perceived Social Support, the Resilience Scale for Adults, and the Achenbach System of Empirically Based Assessment. RESULTS: Overall, participants showed good levels of resilience and perceived social support. A minority of participants reported clinically relevant psychopathological symptoms, 28.81% for anxiety and depression. Most psychopathological symptoms were negatively correlated with resilience (-0.347 < r < - .420), but not significantly associated with social support. Consistent with previous studies, regression analyses highlighted that participants with Duchenne muscular dystrophy were more prone to report anxious and depressive symptoms (B = 1.748, p = .028, OR = 5.744), and participants with myotonic dystrophy, attention problems (B = 2.339, p = .006, OR = 10.376). Resilience emerged as a potential predictor of lower anxious-depressive symptoms (B=-1.264, p = .012, OR = 0.283). CONCLUSIONS: The findings suggest the importance to investigate psychosocial resources in addition to psychopathology among persons with INMD, and to design interventions supporting resilience as a protective factor for mental health promotion.

Beyond polarization towards dynamic balance: harmony as the core of mental health.

Worldviews are culturally derived assumptions that influence individual and collective behaviors, values, and representations of reality. The study of mental functions is not exempt from this influence, as reflected in scientific theories, methodological approaches, and empirical studies. Despite acknowledging the interplay of mental processes with developmental, environmental, and cultural dimensions, psychological research is still primarily based on quantitative methods, and on the conceptualization of mental phenomena as unfolding along polarized continua. A lively epistemological debate surrounds this approach, especially underscoring the risk of blurring the distinction between constructs derived from statistical models and real-life processes and experiences. Based on this debate and on recent empirical evidence derived from the positive psychology literature, this paper is aimed at proposing an integrated view of mental health, as a holistically patterned, contextually imbedded, and dynamic phenomenon changing over time and across life events, with harmony, harmonization and dynamic balance as core qualities. The heuristic potential of investigating the qualitative configuration patterns of mental health dimensions across individuals and groups, beyond their position along a quantitative continuum, is outlined. The development of more integrated approaches and methodologies to investigate mental health as a harmonization process, taking into account personal, contextual and developmental features, would be aligned with evidence derived from the integration of traditional nomothetic and ideographic approaches, and other life sciences. However, the development of a transdisciplinary line of research requires further inputs from different epistemological views, as well as higher attention to the potential contribution of different philosophical traditions.

Predicting sense of coherence among caregiving partners of persons with multiple sclerosis.

PURPOSE/OBJECTIVE: Within the framework of the Salutogenic Model of Health, this study aimed to investigate sense of coherence among caregiving partners of persons with multiple sclerosis (PwMS), and its relationship with perceived social support and illness beliefs conceived as generalized resistance resources in tension management. RESEARCH METHOD/DESIGN: In this cross-sectional study, 398 caregiving partners of PwMS (Mage = 44.62; 34.9% women and 65.1% men) filled in questionnaires measuring sense of coherence (Sense of Coherence Scale-13), perceived social support from family, friends and significant others (Multidimensional Scale of Perceived Social Support), and illness beliefs (Revised Illness Perception Questionnaire). Hierarchical linear regression analysis was performed to assess the contribution of perceived support and illness beliefs to sense of coherence, controlling for sociodemographic and clinical variables. RESULTS: Perceived support from family and beliefs concerning illness-related emotional representations, illness coherence, and treatment control emerged as significant predictors of participants' sense of coherence. Higher perceived support from family and stronger beliefs in illness coherence and treatment control were associated with higher sense of coherence, while more negative emotional representations were related to lower sense of coherence values. CONCLUSIONS/IMPLICATIONS: Findings lend support to the relevance of a salutogenic approach to caregiving in multiple sclerosis. They further suggest the usefulness of interventions that can promote caregivers' sense of coherence and successful coping in life by benefitting from family support, favoring the construction of a coherent illness view, offering comprehensive information and expert guidance on treatment and rehabilitation opportunities, and promoting adaptive management of negative emotions. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Post-traumatic stress symptoms and benefit finding: a longitudinal study among Italian health workers during the COVID-19 pandemic.

PURPOSE: Research has highlighted that the exposure of healthcare professionals to the COVID-19 pandemic for over two years can lead to the development and persistence of symptoms characteristic of Post-Traumatic Stress Disorder (PTSD), with serious consequences on both the individual well-being and the quality of care provided. The present study was aimed at investigating the role of benefit finding in moderating post-traumatic stress symptoms (PTSS) over time. METHODS: The longitudinal study, conducted between April and October 2020, involved 226 Italian health workers (44.7% nurses and midwives, 35% doctors, 20.3% technical and rehabilitation professionals), who filled out an online survey at the beginning of the study (T1), after three months (T2), and after six months (T3). Participants (77.4% women; mean age = 41.93, SD = 12.06) completed the PTSD Checklist for DSM-5 (PCL-5) and Benefit Finding, a 17-item questionnaire measuring the perceived level of positive consequences derived from stressful experiences. A hierarchical regression analysis highlighted the moderating effect of benefit finding (T2) on the association between PTSS values at T1 and T3. RESULTS: A buffering effect was observed, with higher benefit finding levels reducing the magnitude of the bivariate association between PTSS assessed at the beginning and at the end of the study. CONCLUSION: Findings suggest the potential mental health related benefits of interventions allowing health professionals to identify positive aspects in the experience of working under prolonged emergency circumstances, such as the pandemic ones.

The Change in Social Eating over Time in People with Head and Neck Cancer Treated with Primary (Chemo)Radiotherapy: The Role of Swallowing, Oral Function, and Nutritional Status.

This study aimed at investigating the change in social eating problems from diagnosis to 24 months after primary (chemo)radiotherapy and its associations with swallowing, oral function, and nutritional status, in addition to the clinical, personal, physical, psychological, social, and lifestyle dimensions. Adult patients from the NETherlands QUality of life and BIomedical Cohort (NET-QUBIC) treated with curative intent with primary (chemo)radiotherapy for newly-diagnosed HNC and who provided baseline social eating data were included. Social eating problems were measured at baseline and at 3-, 6-, 12-, and 24-month follow-up, with hypothesized associated variables at baseline and at 6 months. Associations were analyzed through linear mixed models. Included patients were 361 (male: 281 (77.8%), age: mean = 63.3, SD = 8.6). Social eating problems increased at the 3-month follow-up and decreased up to 24 months (F = 33.134, p < 0.001). The baseline-to-24 month change in social eating problems was associated with baseline swallowing-related quality of life (F = 9.906, p < 0.001) and symptoms (F = 4.173, p = 0.002), nutritional status (F = 4.692, p = 0.001), tumor site (F = 2.724, p = 0.001), age (F = 3.627, p = 0.006), and depressive symptoms (F = 5.914, p < 0.001). The 6-24-month change in social eating problems was associated with a 6-month nutritional status (F = 6.089, p = 0.002), age (F = 5.727, p = 0.004), muscle strength (F = 5.218, p = 0.006), and hearing problems (F = 5.155, p = 0.006). Results suggest monitoring social eating problems until 12-month follow-up and basing interventions on patients' features.

Stress and mental health of COVID-19 survivors and their families after hospital discharge: relationship with perceived healthcare staff empathy.

Several studies attest to the long-term consequences of COVID-19 infection on survivors' mental illness, especially in terms of high prevalence of post-traumatic stress disorder (PTSD) 1-3 months after hospitalization. Aims of the present study were (1) to jointly evaluate PTSD and positive mental health among COVID-19 survivors and family members after hospital discharge, and (2) to investigate the relationship between perceived healthcare staff's relational empathy during hospitalization and survivors' post-traumatic stress levels. In this cross-sectional study, 60 survivors (Mage = 60.45; 63.3% men) and 40 family members (Mage = 52.33; 60% women) participated in an online survey 3-7 months after hospital discharge. In addition to providing socio-demographic data, they completed PTSD Checklist for DSM-5 and Mental Health Continuum Short Form. Survivors also completed the Consultation and Relational Empathy measure. Percentages of participants meeting a provisional PTSD and mental health diagnosis (flourishing, moderate, languishing) were calculated. A hierarchical regression analysis was performed on survivors' data, with perceived staff's empathy as predictor and post-traumatic stress symptoms (PTSS) as outcome. One-fifth of the participants received a provisional PTSD diagnosis, about half were diagnosed with flourishing or moderate mental health, and only 5% were languishing, with no significant between-group differences. Among survivors, a negative association was detected between perceived healthcare staff's empathy and PTSS, explaining 10.5% of the model variance over and above demographic and clinical variables. Findings highlighted the coexistence of PTSD and positive mental health among survivors and family members, suggesting the usefulness of assessing both negative and positive dimensions of mental health, in order to promote psycho-social adaptation once returning to everyday life. In addition, the role of compassionate care in clinical practice emerged as a potential means to mitigate severe traumatic reactions among survivors.

Resilience and Experience of the COVID-19 Pandemic among Italian University Students: A Mixed-Method Study.

A vast amount of literature has highlighted that restrictions imposed by the COVID-19 pandemic, such as lockdowns and the resulting interruption of face-to-face academic activities, strongly disrupted students' daily routine and undermined their well-being. Through a mixed method approach, this study was aimed at investigating the association between students' experience of the health emergency and their resilience levels during the first pandemic outbreak. Between April and May 2020, 421 Italian university students attending Health Sciences, Humanities, and Political Sciences courses completed the Resilience Scale for Adults (RSA), provided narratives about the emergency by answering an open-ended question, and filled out a demographic questionnaire. Results showed that narratives about community/society issues were by far the most recurrent ones across disciplinary areas, while a significantly higher percentage of students from Humanities focused on study/university. Health Sciences students were more likely to provide narratives concerning social commitment, and they reported significantly higher resilience levels than Humanities students. A higher percentage of students with moderate resilience focused their narratives on the study/university domain, compared to students with high resilience. Findings suggest the importance of supporting students' resilience to counterbalance their academic concerns in both times of crisis and ordinary times.

Psychological distress and resilience among italian healthcare workers of geriatric services during the COVID-19 pandemic.

The COVID-19 pandemic exposed healthcare workers (HW) to heavy workload and psychological distress. This study was aimed to investigate distress levels among Italian physicians, nurses, rehabilitation professionals and healthcare assistants working in geriatric and long-term care services, and to explore the potential role of resilience as a protective resource. The General Health Questionnaire-12, the Connor-Davidson Resilience Scale, and a demographic survey were completed by 708 Italian HWs. Distress and resilience levels were compared between professionals through ANOVA; the contribution of sex, age, professional role, and resilience to distress was explored through regression analyses. Physicians reported significantly higher resilience and distress levels than rehabilitation professionals and healthcare assistants respectively. Women, HWs aged above 45, physicians, and participants reporting low resilience levels were at higher risk for distress. Findings suggest the importance of supporting HW's resilience to counterbalance the pandemic related distress.

Flow Experience and Emotional Well-Being among Italian Adolescents during the COVID-19 Pandemic.

Research highlighted the negative consequences of the COVID-19 pandemic on adolescents' emotional well-being worldwide. In the attempt to identify resources which could facilitate adolescents' adjustment, this study examined the occurrence of flow experience and related activities, and the association between flow and emotional well-being among Italian teenagers. In Spring 2021, 150 students (40.7% girls) aged 15-19 completed instruments assessing flow and related activities before and during the pandemic, and current positive and negative affect. Findings revealed that only 24.7% of the participants currently reported flow; over half of those reporting flow before the pandemic did not experience it subsequently, and only 6.5% of those not reporting flow before the pandemic currently experienced it. Participants with flow both before and during the pandemic reported higher positive affect than teens who never experienced flow (p = .011), or lost it (p = .006). No group differences were detected for negative affect. Learning, structured leisure, and interpersonal relations were the domains most frequently associated with flow before and during the pandemic, but after the pandemic onset a reduction in the variety of flow activities and limited identification of new flow domains were observed. The association of flow with higher emotional well-being even in pandemic times suggests the potential usefulness of interventions promoting flow retrieval under adverse circumstances.

The care needs of persons with oropharyngeal dysphagia and their informal caregivers: A scoping review.

INTRODUCTION: Besides affecting physical health, Oropharyngeal Dysphagia (OD) entails limitations in daily activities and social participation for both patients and their informal caregivers. The identification of OD-related needs is crucial for designing appropriate person-centered interventions. AIMS: To explore and map the literature investigating the care needs related to OD management of adult persons with OD and their informal caregivers during the last 20 years. METHODS: A scoping review was conducted and reported following PRISMA guidelines. Five electronic databases and reference lists of eligible publications were searched for original works in English or Italian, published between January 2000 and February 2021. Two independent raters assessed studies' eligibility and extracted data; a third rater resolved disagreements. Extracted care needs were analyzed using a Best fit framework synthesis approach. RESULTS: Out of 2,534 records preliminarily identified, 15 studies were included in the review and 266 care needs were extracted. All studies were conducted in Western countries. Research methods primarily consisted of qualitative interviews and focus groups (14 studies, 93.3%); head and neck cancer was the most frequent cause of patients' dysphagia (8 studies, 53.3%); caregivers' perspective was seldom investigated (5 studies, 33.3%). Both patients and caregivers primarily reported social (N = 77; 28.9%) and practical (N = 67; 25.2%) needs, followed by informational (N = 55; 20.7%) and psychological (N = 54; 20.3%) ones. Only patients reported physical needs (N = 13; 4.9%), while spiritual needs were not cited. CONCLUSIONS: The recurrence of personal and social needs besides physical ones highlighted the manifold impact of OD on patients' and caregivers' lives. Larger and more focused studies are required in order to design tools and interventions tailored to patients' and caregivers' needs.

Measuring and Assessing Fluctuating and Authentic-Durable Happiness in Italian Samples.

On the basis of the self-centeredness and selflessness model, a new instrument assessing two distinct dimensions of happiness, fluctuating and authentic-durable, was developed. The current research aimed at examining the factor structure of the Italian version of the instrument, its psychometric properties and construct validity. To this end, two studies were carried out. Study 1 (N = 544) examined different measurement models, from unidimensional to multidimensional, from a fully symmetrical bifactor solution to a bifactor (S-1) solution. Findings indicated better and adequate fit indices for the last model. Using various samples (n = 1274) Study 2 confirmed the bifactor (S-1) structure and analysed psychometric properties, convergent and divergent validity and temporal stability of the instrument. Findings generally gave evidence of the multidimensional conceptualization of the construct, good levels of reliability values and adequate convergent validity of both scales. Discriminant validity showed mixed results from no association of age with authentic-durable happiness to weak and negative association with fluctuating happiness. Test-retest reliability displayed an adequate value of correlation coefficient for the two set scores of the authentic dimension and a value below the recommended cut-off criteria for the fluctuating dimension, where significant differences in the mean scores emerged. Future studies should aim to replicate the results of this research and attempt to overcome its limitations.

The relationship between post-traumatic stress and positive mental health symptoms among health workers during COVID-19 pandemic in Lombardy, Italy.

BACKGROUND: The COVID-19 pandemic is exposing health workers (HW) worldwide to extreme burden and risk of developing post-traumatic stress disorder (PTSD). This problem emerged in Lombardy, the Italian region where the pandemic exacted the heaviest toll. Study aims were to assess mental health of HW in Lombardy after the peak of COVID-19 related hospitalizations, through the joint evaluation of PTSD and positive mental health; and to explore the potential role of positive mental health in PTSD development. METHODS: HW completed an online survey including demographic and work-related information; PTSD Checklist for DSM-5; Mental Health Continuum Short-Form. Analyses comprised calculation of percentages of participants meeting a provisional PTSD and mental health diagnosis (flourishing, moderate, languishing); a binary logistic regression with demographics, work-related features, and positive mental health as predictors, and provisional PTSD diagnosis as outcome. RESULTS: Out of 653 participants, 39.8% received a provisional PTSD diagnosis; 33.4% reported flourishing, 57.7% moderate, and 8.9% languishing mental health. Regression analysis highlighted that women vs. men, nurses vs. technical/rehabilitation HW, frontline vs. second-line workers and languishing vs. moderately mentally healthy HW were more likely to receive a provisional PTSD diagnosis, whereas flourishing participants were more likely not to receive it. No role emerged for job seniority. LIMITATIONS: Self-reported PTSD scores, stress symptoms related to COVID-19 considered as a global stressor, cross-sectional study design. CONCLUSIONS: Findings suggest the potential usefulness of supporting vulnerable HW categories during massive disease outbreaks through emergency-focused professional training and psychological intervention addressing both positive mental health promotion and PTSD prevention.

The Contribution of Illness Beliefs, Coping Strategies, and Social Support to Perceived Physical Health and Fatigue in Multiple Sclerosis.

This study investigated the relationship of illness beliefs with perceived physical health and fatigue among persons with multiple sclerosis. Besides direct effects between illness beliefs and outcome measures, the mediational role of coping strategies and social support was examined. Six hundred and eighty persons with multiple sclerosis completed the Revised Illness Perception Questionnaire evaluating illness beliefs; the Brief COPE measuring problem-focused, meaning-focused, and avoidant strategies; the Multidimensional Scale of Perceived Social Support assessing social support; MS Quality of Life-54 investigating perceived physical health; and the Fatigue Severity Scale assessing physical fatigue. Mediation analyses were performed controlling for disability level. Direct effects were identified for both perceived physical health and fatigue, whereas indirect effects were observed only for physical health through avoidant strategies and social support. Based on present findings, psychological intervention may primarily target illness beliefs to address fatigue, and beliefs and coping strategies to improve perceived physical health.

Italian validation of the caregiving tasks in multiple sclerosis scale (CTiMSS).

OBJECTIVES: Informal caregivers provide fundamental help to persons with multiple sclerosis through a variety of tasks ranging from practical assistance to psychological support. Caregiving Tasks in Multiple Sclerosis Scale (CTiMSS) is a reliable and valid measure assessing the complex structure of caregiving tasks within the context of multiple sclerosis. The present study was aimed to test the validity and reliability of the Italian translation of CTiMSS in a sample of informal caregivers of persons with multiple sclerosis. METHODS: A total of 580 caregivers (51.4% women, aged 18-81, M = 46.47, SD = 12.8) together with their care recipients (63.1% women, aged 19-60, M = 40.08, SD = 9.9) were involved in this study. Exploratory and confirmatory factor analyses with a split-sample approach were employed to evaluate construct validity. Convergent and discriminant validity were assessed using correlation indices with scales from Short Form Health Survey-36 and Positive and Negative Affect Schedule. Cronbach's alphas were used as a measure of reliability. RESULTS: Compared with the original CTiMSS 4-factor structure, a more stable and valid solution with 3 first-order factor loading on a single second-order factor was evaluated and confirmed; convergent and discriminant validity were also supported, and Cronbach's alpha values highlighted good-to-excellent reliability levels. CONCLUSION: Results supported the validity and reliability of the Italian CTiMSS. Thanks to its ability to assess specific caregiving tasks, the measure can be a useful instrument for tailoring intervention focused on the promotion of both caregivers' and care recipients' quality of life.

Perceived well-being and mental health in haemophilia.

The investigation of mental health among persons with haemophilia is mostly focused on negative and disease-related indicators. Literature however shows that psychosocial resources and optimal daily functioning can co-exist with chronic disease. The Dual Continua Model operationalizes positive mental health as 'flourishing', a condition comprising emotional, psychological, and social well-being dimensions. In the present study physical and mental health were comparatively assessed through positive and negative indicators in adults with haemophilia and a control group. Participants included 84 Italian persons with severe haemophilia (Mage = 43.44; SDage = 13.04) and 164 adults without history of chronic illness (Mage = 40.98; SDage = 12.26), who completed the Short Form Health Survey, the Positive and Negative Affect Schedule, and the Mental Health Continuum Short Form. MANOVA and post-hoc t-tests provided evidence of worse general health, lower negative affect and higher psychological well-being among participants with haemophilia compared with the control group. Moreover, the percentage of flourishing individuals was higher among participants with haemophilia. Results support previous evidence suggesting that a chronic disease does not prevent mental well-being attainment. The identification of assets and strengths allowing people with haemophilia to flourish can be fruitfully used to design resource-centered interventions.

The caring experience in multiple sclerosis: Caregiving tasks, coping strategies and psychological well-being.

Informal caregivers play a crucial role in supporting persons with multiple sclerosis (MS), a neurodegenerative disease resulting in progressive worsening of physical and cognitive functioning. While research extensively showed that caregiving workload can be perceived as burdensome, little attention was devoted to the relation connecting workload and caregivers' well-being. Building on previous literature on stress and coping, the aim of this study was to test the mediational role of coping between caregivers' tasks and well-being. A group of 680 caregivers of persons with MS (M age = 46.45; 51.2% women) was recruited in eight Italian MS centres between June 2015 and December 2016. Caregiving tasks related to basic activities of daily living (ADL), instrumental ADL, psycho-emotional and social-practical care were assessed through the Caregiving Tasks in MS Scale; coping strategies (avoidance, criticism and coercion, practical assistance, supportive engagement, positive reframing) were investigated through the Coping with MS Caregiving Inventory; well-being was evaluated through the Psychological Well-Being Scales. Analyses substantiated a multi-mediation model including tasks in basic ADL, psycho-emotional and social-practical care, and the coping strategies avoidance, criticism/coercion, supportive engagement, positive reframing. Basic ADL care was negatively related to psychological well-being through lower use of supportive engagement and positive reframing. By contrast, psycho-emotional and social-practical tasks were both negatively and positively related to psychological well-being, through higher use of avoidance and criticism/coercion as well as supportive engagement and positive reframing. Findings suggest that caregiving tasks are not solely detrimental to well-being, but they may also provide a positive contribution through the adaptive coping strategies supportive engagement and positive reframing. Findings also highlighted task-specific areas that could be targeted in intervention in order to effectively lighten burden and promote well-being among caregivers.

Illness perceptions and psychological adjustment among persons with multiple sclerosis: the mediating role of coping strategies and social support.

Purpose: The aim of this study was to test the Common Sense Model of Self-Regulation among persons with multiple sclerosis (MS), hypothesizing direct relations between illness beliefs and psychological adjustment, and indirect relations through coping strategies and social support.Materials and methods: Questionnaires were administered cross-sectionally to 680 participants (Mage =40.1; 64.4% women) recruited in eight MS units to assess illness beliefs, coping strategies, social support, and adjustment indicators including life satisfaction, psychological well-being, mental health, and depression. Multiple mediational analyses were conducted to identify direct and indirect paths connecting illness beliefs to psychological outcomes.Results: Controlling for disability level, significant direct and indirect relationships were observed: Beliefs on illness coherence, personal and treatment control were associated with better adjustment; emotion representations and cyclic timeline with worse adjustment; illness identity, consequences, psychological and chance/bad luck causes with mixed positive and negative outcomes. Notably, findings identified recurrent and unique pathways connecting illness beliefs to the different indicators through meaning- and problem-focused coping strategies, avoidance and social support.Conclusions: The Common Sense Model can represent a useful framework to be tested in rehabilitation programs, jointly addressing illness beliefs and coping resources for the promotion of psychological adjustment among persons with MS.IMPLICATIONS FOR REHABILITATIONBased on the Common Sense Model, the beliefs held by persons with MS about their illness are related to various aspects of psychological adjustment in multiple ways, both directly and indirectly through engagement in specific coping strategies and perception of social support.Clinicians supporting patients' adjustment may take into account that some illness beliefs were consistently associated with positive adjustment, some with poor adjustment, and some yielded mixed positive and negative results.Some ways in which coping strategies and social support connected illness beliefs to psychological adjustment were specific to the adjustment indicator under consideration including satisfaction with life, psychological well-being, mental health and depression.It may be worth testing comprehensive psychological interventions with the aim of raising awareness of one's illness beliefs, the strategies enacted in response to these beliefs, and the positive and negative relations of these processes with psychological adjustment, encompassing broad areas of individuals' lives and not only health-related issues or depression.

Autonomy level and quality of everyday experience of people with Hereditary Spastic Paraplegia.

In the health domain, well-being is primarily assessed as autonomy and mental distress, whereas the quality of daily experience is rarely investigated. In this study, the relationship between autonomy levels and daily experience was explored. Thirty-five Italian adults with Hereditary Spastic Paraplegia provided for one week real-time descriptions of daily activities and associated experiences through the Experience Sampling Method procedure. Participants were grouped based on autonomy levels assessed through Barthel Index. The relationships between activity typologies, the experiential dimensions, perceived challenges and skills, and autonomy level were analysed. Participants' predominant activities were personal care, associated with global disengagement, and leisure, associated with high control and desirability, but low perceived relevance. During social interactions participants reported engagement and emotional well-being, and during productive activities high activation but negative affect. Multi-level analysis highlighted that this association between activity type and experiential patterns recurred across autonomy levels. In addition, perceived challenges in the activity were lower that perceived personal skills across activities and autonomy levels. Findings suggest that persons with motor disabilities, regardless of their autonomy level, would benefit from more challenging opportunities for action in daily life, in order to attain well-being through active skill mobilisation.