BackgroundIn neurocritical care units (NCCU), decisions to withhold life-sustaining therapies are sometimes influenced by anticipated disability and quality of life (QoL) impairment, particularly when further interventions are deemed futile. However, health-related QoL (HRQoL) is inherently subjective and does not always correlate with disability levels. This qualitative, noninterventional study aimed to assess the relevance of HRQoL in ethical decision-making using interpretative phenomenological analysis (IPA) to investigate subjective HRQoL.MethodsPatients were interviewed by a single intensivist to assess their subjective QoL 2 years after their stay in an NCCU following an acute brain injury (ABI). The intensivist directed the interview toward HRQoL using a guide comprising limited and mostly open-ended questions. Audio recordings of the interviews were transcribed verbatim into Word narratives, analyzed in depth by two intensivists using IPA methodology and NVivo 14 software to enable exploration of patients' lived experiences and personal QoL assessments.ResultsA total of 14 patients were invited to the follow-up appointment, 7 for whom life-sustaining treatment had been withheld in the NCCU and 7 matched patients for whom this decision had not been made. Among the nine patients finally included, life-sustaining treatment had been withheld in four cases. Patients varied greatly in how they perceived and valued their QoL. While most valued relationships and independence, they expressed these values in different ways. Frustration with disability and support from relatives emerged as key motivators for rehabilitation. Despite their challenges, patients expressed gratitude for survival and pride in their progress and daily achievements. Overall, their experiences highlighted the deeply personal and subjective nature of disability and QoL assessment.ConclusionsHRQoL after ABI is highly subjective and should be considered with great caution in decisions to withhold life-sustaining treatment in NCCU. Further studies are warranted to improve outcome assessment after ABI and aid ethical decision-making.

ABSTRACT Background Emotional regulation (ER) is crucial for the psychological well‐being of patients with cancer and their relatives. Various ER interventions exist but often suffer from poor adherence and high attrition rates. Aims This systematic review aims to identify ER interventions for patients with cancer and their relatives, describe their content, development, and evaluation methods, and assess their efficacy on ER and psychological health outcomes. Methods Cochrane, Embase, PsycArticles, PsycINFO, and Web of Science databases were searched. Eligible studies examined individual interventions targeting ER (Intervention) in adult patients with cancer and their relatives (Population), included a control group or a pre–post assessment (Comparator), and reported outcomes related to ER or psychological health outcomes using quantitative or mixed‐method results (Study type). Results Eight studies were included. Most interventions were theoretically grounded in cognitive behavioral therapy (CBT) and followed a similar structure: informational sessions, skill‐building modules using targeted therapeutic techniques, and consolidation via homework and relapse‐prevention exercises. Despite high attrition rates, most interventions significantly improved ER and psychological outcomes. Some trials lacked statistical significance, mainly due to methodological limitations. Although acceptability was rarely assessed, evidence suggests patient–relatives dyadic approaches may better meet participant needs. Conclusion ER interventions share common features and show effectiveness but sometimes lack alignment between objectives and evaluated outcomes. Retention remains a major challenge, emphasizing the need to redesign interventions and their implementation. Future research should explore attrition causes and develop strategies to enhance engagement.

PurposeAs medical demography evolves, with patients living longer, cancer mortality declining, and quality of life gaining importance over survival, eHealth tools such as mobile apps and websites have emerged to support psychosocial care in addition to addressing medical needs. Yet, implementing these tools in cancer care remains complex, affected by multilevel factors ranging from intrinsic motivation and digital literacy (micro) to institutional culture, funding, and health policy (macro). A key limitation may be that many digital tools are not codeveloped between researchers and clinicians, leading to poor transferability. This study aimed to explore healthcare professionals' perspectives on the implementation of digital supportive care tools for patients with cancer and their relatives.MethodA qualitative study was conducted using semistructured interviews held via videoconferencing with healthcare professionals practicing in oncology. Data were analyzed using an inductive thematic analysis.ResultsForty-three healthcare professionals participated. Four main themes emerged: (1) the oncology care context (e.g., workforce shortages, digital healthcare evolution, and geographic disparities); (2) perceived benefits of eHealth tools for patients, caregivers, and providers; (3) desired features and content of such tools (e.g., reliable information, interactive exercises, and symptom tracking); and (4) barriers and facilitators to implementation, including intrinsic motivation, digital access, and institutional support.ConclusionsHealthcare professionals recognize the potential of eHealth tools to support patients with cancer and their relatives. However, effective implementation requires early involvement of end users and context-specific strategies to ensure these tools are truly integrated into cancer care pathways.

PURPOSE:As cancer care shifts to the home, relatives increasingly provide support to people with cancer and face emotional, informational, and practical challenges that digital supportive tools may help address. This study aims to explore relatives' perceptions of gaps in the cancer journey and their expectations, perceived benefits, and barriers regarding a digital supportive care tool in oncology. METHOD:A qualitative exploratory study was conducted using semi-structured online interviews with 20 relatives of patients with cancer who were currently providing, or had previously provided, support. Participants included family members and other close persons involved in supporting a person with cancer. Data were analyzed using reflexive thematic analysis. RESULTS:Three themes emerged. First, participants described significant gaps in care, including unmet informational and psychosocial needs, communication challenges, the burden of supporting a relative with cancer, difficulties navigating health information, and feelings of illegitimacy when seeking support. Second, they outlined expectations for a well-designed digital tool, emphasizing usability, personalization, psychoeducational and emotional content, organizational features, hybrid human-digital guidance, inclusivity, and legitimacy through co-construction. Third, digital tools were viewed as potential bridges to support, information, and connection beyond hospital settings, facilitating communication and peer exchange. However, concerns were raised about emotional limitations, data security, complexity, and inequalities related to age, financial precarity, and digital literacy. CONCLUSIONS:Co-designed, accessible, and integrated digital tools may complement psychosocial care and may help address the burden experienced by relatives throughout the cancer trajectory.

The literature has reported inequality in access to both medical and psychosocial supportive care in oncology for which digital health technologies (e.g., wireless technologies, telemedicine) may be a suitable solution. Given attitudes could influence acceptability of such tools, this pre-registered qualitative study aimed to investigate patients’ and survivors’ attitudes toward digital psychosocial supportive care interventions and needs. A total of 36 patients (31 female, five male; mean age = 49.86 ± 10.93 years) were recruited for semi-structured interviews. Patients were found to have positive attitudes toward the digitalization of supportive care. However, they had some concerns, including about the complementarity between digital and in-person care and the security of data, which should be considered during the development of interventions. Participants asked for a participative design, transparency during intervention development, and frequent user experience evaluations for tailored interventions. Those findings lead to recommendations for the development of future digital interventions.

We investigated whether olfactory stimulation can enhance the retrieval of contextual details-"who/where/when"-during autobiographical memory recall in patients with Alzheimer's-disease (AD). Previous research has shown that odors can trigger vivid autobiographical memories in healthy-adults, but evidence in AD is limited, and most studies have focused on general memory recall rather than specific contextual information. Given that a key feature of autobiographical decline in AD is difficulty retrieving contextual details, it remains unclear whether olfactory cues can selectively improve recall of "who," "where," and "when" information. In this cross-sectional study, 33 patients with AD and 35 healthy controls retrieved autobiographical events with and without odor exposure. Analyses revealed that odor exposure increased the number of "who," "where," and "when" details in both groups. These findings address a critical gap in the literature, demonstrating that olfactory stimulation can specifically support contextual memory retrieval in AD, offering a non-invasive-tool to mitigate autobiographical memory deficits.

OBJECTIVES:Couples facing Parkinson's disease (PD) deal with continuous adaptation to the numerous challenges PD brings, suggesting an evolving functioning over time, which remains understudied. The present study aimed to provide an integrative understanding of couples' functioning in PD by exploring and identifying distinct patterns of couple functioning and their potential trajectories over the course of PD. DESIGN:To overcome common challenges associated with longitudinal approaches, this study uses a qualitative cross-sectional design, aiming to put into perspective qualitative data collected at three different time points of PD. METHODS:Forty-five couples facing PD were interviewed. Data were analysed using Interpretative Phenomenological Analysis, which first enabled us to identify dyadic processes characterizing distinct patterns of couples' functioning. Their evolution was examined, revealing potential trajectories of these patterns. RESULTS:Five distinct patterns of dyadic functioning were identified: 'Coping with the disease, together', 'Helping in the shadows', 'Avoid the disease or collapse', 'Action vs. withdrawal' and 'The most total gap between us'. While some couples' functioning tends to remain stable or become more rigid within a single pattern, others may evolve and shift towards another pattern of couple functioning as PD's symptoms change, intensify or are anticipated to worsen. CONCLUSIONS:This study underscores the need to consider dyadic functioning and its potential evolution in support of couples as early as possible in the course of PD. This study also encourages studies proposing staggered, small-sample follow-ups as a viable approach to better and fully capture transitions in couples' functioning in slow-evolving illnesses like PD.

Coping with stress in families is rarely an individual process and often extends beyond the couple subsystem to involve parents and children jointly. Although dyadic coping has been extensively studied, no validated instrument currently exists to assess how families cope with stress at the triadic level. The present study aimed to develop and validate the Triadic Coping Inventory (TCI), a self-report measure designed to capture coping as a coordinated, systemic process operating across parent-child dyads, the couple subsystem, and the family triad. Participants were 632 French-speaking individuals living with at least one child aged 5-14 years. Using a split-sample design, exploratory factor analyses were conducted on 60% of the sample and confirmatory factor analyses on an independent holdout subsample (40%). Results supported a multidimensional structure comprising four parent-child dyadic coping factors, four couple-level dyadic coping factors, and two family-level triadic coping factors distinguishing positive and negative triadic coping. Internal consistency was acceptable to excellent across subscales, with stronger reliability observed for family-level coordinated coping dimensions. Construct validity was supported through theoretically coherent associations with attachment insecurity, emotion regulation, individual coping strategies, and relationship satisfaction. Criterion-related validity analyses showed strong associations between triadic coping dimensions and relationship satisfaction, and incremental validity analyses demonstrated that TCI subscales explained substantial additional variance in satisfaction beyond attachment dimensions. Together, these findings support the TCI as a reliable and valid instrument for assessing triadic coping processes in families with school-age children. The TCI offers a novel tool for advancing research on family stress regulation and for informing clinical assessment and intervention targeting family-level coping dynamics. (PsycInfo Database Record (c) 2026 APA, all rights reserved).

The present study aimed to provide an overview of the experiences of couples coping with Parkinson's disease (PD), along with a synthesis of the mechanisms involved in changes within the couple's relationship in the context of PD. These mechanisms were identified using a qualitative approach: dyadic Interpretative Phenomenological Analysis. Forty-five couples separated in three groups according to disease progression, participated. Interviews were conducted separately with each partner. After individual analysis, the salient individual and dyadic phenomena were identified at the group level. Three mechanisms emerged regardless of disease stage: having divergent views on PD, being united and cohesive, avoiding discussing the disease. Other mechanisms were more specific to some stages. Even with few consequences on independence, PD can significantly impact the couple's dynamics. In most cases, strategies for adjusting to PD and/or the changes it causes in the couple's relationship lead to tension and negative emotions. Better support for both partners is needed to promote better adjustment strategies from the early stage of PD.

INTRODUCTION:We outline the steps in creating and evaluating the content and face validity of the Questionnaire on Parental Hope in Pediatric Oncology (Q-PHPO), which measures the understanding of information provided by healthcare professionals (Part 1) and hope as experienced and perceived by parents (Part 2). METHODS:The development of the Q-PHPO was based on a literature review and 14 interviews with parents whose children had been diagnosed with cancer. The content and face validity were verified both quantitatively and qualitatively by assessing the clarity, relevance, and discomfort caused by the questionnaire, with input from expert parents (n = 7) and professionals (n = 10). RESULTS:In terms of clarity, most items had an item content validity index (I-CVI) ≥ 0.80 and a kappa (K) value ≥ 0.74. Despite more nuanced results being obtained for relevance, most items had an I-CVI ≥ 0.70 and a K value ≥ 0.74. After revision, the first part of the Q-PHPO includes two dimensions: the child's illness (5 items) and the child's psychosocial well-being (4 items). The second part contains 20 items divided into three dimensions: the child's illness (6 items), the child's psychosocial well-being (9 items), and the parent's psychosocial well-being (5 items). CONCLUSIONS:The results provide evidence of the content and face validity of the Q-PHPO. Further testing will confirm the questionnaire's construct and criterion validity and its reliability, making it a potentially valuable tool in pediatric oncology departments. PATIENT OR PUBLIC CONTRIBUTION:In this study, we adopted a Patient and Public Involvement and Engagement approach, actively involving patients, healthcare professionals, and researchers as key contributors to the development and evaluation of the Q-PHPO questionnaire. Parents of children in remission from leukemia and healthcare professionals provided valuable insights based on their lived experiences, influencing the content of the questionnaire, and contributed by assessing the relevance and clarity of the questionnaire items. Researchers specializing in questionnaire development and oncology reviewed and refined the instrument, ensuring its validity and suitability.

OBJECTIVE:Patient-physician communication in oncology has been studied extensively. Most studies have focused on healthcare professionals' (HCPs) communication, showing the importance of a patient-centred approach. While some studies have explored the behaviours of patients and their relatives, the majority have centred on HCPs' behaviours, with much less attention to patients' communication patterns during consultations. The main objective of this systematic review was to examine how patients communicate and behave during oncology consultations and to identify the factors influencing these behaviours. METHODS:Five databases were searched to find studies analyzing the communication patterns of patients and their relatives during oncology consultations that were audio- and/or video-recorded. RESULTS:Based on the 34,779 references identified, we included 47 studies in our review. Three main themes emerged from the analysis: (1) patients' communication patterns and the topics discussed during oncology consultations; (2) factors influencing patient communication; and (3) patients' perception of and satisfaction with the consultation. CONCLUSIONS:Patients exhibited active behaviours during consultations. However, many factors can influence interactions. We recommend taking a comprehensive approach that involves considering communication factors and supporting the development of patient-centred strategies tailored to individual patient needs. HCPs should not only practice patient-centred care; they should also implement specific actions to address patients' psychosocial needs. Future research should also utilize complex models to better understand the dynamics of patient-provider communication.

PURPOSE:Considering the distress experienced by caregivers, numerous support systems have been devised. Recently, interventions focused on positive psychology have resulted in beneficial effects for caregivers. This study aimed to investigate the experience of caregivers of people with Alzheimer's disease with an online positive psychology intervention. METHODS:To understand caregivers' experiences of an 8-week positive psychology intervention, 10 participants participated in a semistructured individual interview. Interpretative phenomenological analysis was carried out on the interviews. RESULTS:Three themes were identified. [1] Engaging half-heartedly: Positive psychology was initially perceived as an unknown and caregivers expressed their scepticism before gradually integrating the intervention into their daily routine. [2] Letting yourself be destabilized: Caregivers went through an uncomfortable phase, becoming aware of their overprotective or controlling behaviours and the consequences of their psychological distress. [3] A springboard to change: Several realizations resulted in changes, such as reactivating internal resources and cultivating a more balanced outlook with less focus on the illness of the care receiver and the caregiving situation. CONCLUSIONS:The results show that caregivers were completely autonomous during the online intervention and engaged in the processes promoted by positive psychology, which supports further development of online resources for caregivers.

The literature has reported inequality in access to both medical and psychosocial supportive care in oncology for which digital health technologies may be a suitable solution. Given attitudes could influence acceptability of such tools, this pre-registered qualitative study aimed to investigate patients’ and survivors’ attitudes toward digital psychosocial supportive care interventions and needs. A total of 36 patients (31 female, five male; mean age = 49.86 ± 10.93 years) were recruited. Patients were found to have positive attitudes toward the digitalization of supportive care. However, they had some concerns, including about the complementarity between digital and in-person care and the security of data, which should be considered during the development of interventions. Participants asked for a participative design, transparency during intervention development, and frequent user experience evaluations for tailored interventions. Those findings lead to recommendations for the development of future digital interventions.

Objectives: BRCA1/2 pathogenic variants have been associated with an increased risk for breast, ovarian, pancreatic, prostate cancer as well as melanoma. The present research uses the Leventhal's common- sense model of self- regulation (CSM), a theoretical framework highlighting the role of mental representations on responses to a health- threat. We aim at understanding the personal meaning and representation of living with an hereditary breast and ovarian cancer predisposition. Method: Semi- structured interviews of 15 BRCA carriers were analysed using the interpretative phenomenological analysis. Results: Mental representations develops in childhood and are influenced by childhood emotional responses to the familial experience of the BRCA predisposition. Pre- existing beliefs about BRCA, even erroneous, are deeply anchored and not called into question by medical informations given during the genetic counselling. This is particularly true when medical information is perceived as too complex, inconsistent or in contradiction with familial experience. These beliefs about the consequences of being carriers of the BRCA gene influence emotional and behavioural experiences leading to experience fear, anxiety, lack of hope for future or self- identity change. For participants with a traumatic familial experience of cancer, the lack of treatment for this genetic disease generates a perpetual overestimation of cancers' risk and the feeling of an unending danger associated with early death despite breast and ovarian prophylactic surgery. When strong negative representations of the BRCA predisposition are experienced, dysfunctional health behaviours, such as drugs consumption or overuse of medical consultations, could appear consecutively to emotional disorders.

Background: Alzheimer’s disease (AD) is characterized by severe memory alterations, affecting especially memories of personal past events. Until now, autobiographical memory impairments have been characterized using formal memory assessments, requiring patients to strategically and deliberately recall past events. However, contrary to this highly cognitively demanding mode of memory recall, autobiographical memories frequently come to mind unexpectedly based on automatic associative processes. The involuntary recall of personal memories is effortless and possibly represents a preserved way for AD patients to remember past events. Objective: This study aimed to investigate involuntary autobiographical memory in AD patients and compare the characteristics of these memories with those of healthy controls. Methods: Involuntary autobiographical memory was measured in 24 AD patients and 24 matched control participants using self-report measures. Participants were asked to report the frequency with which involuntary autobiographical memories were experienced in their daily life and to describe and self-assess one example of an involuntary memory. Results: We showed that AD patients and control participants did not differ in terms of the frequency or subjective characteristics of their involuntary autobiographical memories in daily life, except for feelings of intrusiveness. Compared to control participants, AD patients reported their involuntary autobiographical memories as being more intrusive. In addition, more negative and vague involuntary autobiographical memories were associated with greater depressive symptoms. Conclusions: These findings open up a new avenue for research to better understand the extent to which involuntary autobiographical memory might be preserved in AD patients and why these memories may in turn become intrusive to patients.

PURPOSE:The onset of paediatric cancer leads to changes in the functioning of the parental couple. The interactions and interdependence between partners affect their individual and dyadic adjustments. Hope can enable parents to cope with difficulties and alleviate their distress. The aim of this study is to explore how both partners experience their relationship dynamics and hope within the couple. METHOD:This qualitative study focused on 7 couples whose child was in remission from cancer; each parent was interviewed separately. The semi-structured interviews were subjected to interpretative phenomenological analysis. RESULTS:Three themes were found to characterise the experiences of couples faced with their child's cancer. "Captain and first mate" emphasises the gendered and hierarchical distribution of roles based on the analogy of a crew struggling against the threat of cancer. "The emotional compass" focuses on how emotions guide each partner's attempts to meet their own need for emotional expression and that of their partner. "In the same boat, with divergent hope sails" reflects the complex and diverse ways in which hope and forms of hope are expressed, perceived as a resource which is often precious, sometimes viewed as unthinkable because it reflects the violence associated with the despair of the situation and transferred from one parent to the other. DISCUSSION:These findings highlight the need to focus on the organisation of role, the interaction of emotional needs and the dynamics of hope within parental dyads to optimise the management of couples faced with their child's cancer.

OBJECTIVES:We assessed whether individuals with mild Alzheimer's disease (AD), despite some deficits in autobiographical memory, could effectively convey their personal experiences through storytelling. METHODS:We invited 37 individuals with mild AD and 37 control participants to share their personal experiences. We rated these narratives based on five characteristics of storytelling: focus, reflection, entertainment, structure, and specificity. RESULTS:Analyses demonstrated that individuals with AD conveyed more general than specific memories, and no significant differences were observed between structured and unstructured memories. Importantly, individuals with AD recounted more memories with focus than without, with reflection than without, and that were entertaining than were not. Compared with those of the control participants, the narratives of the individuals with AD were less focused, structured, and specific. However, no significant differences were observed between the two samples regarding reflection or entertainment. CONCLUSIONS AND CLINICAL IMPLICATIONS:Individuals with mild AD can have difficulties in retrieving specific memories, but their storytelling of personal experience can be focused, exhibit reflection, and be entertaining. Individuals with mild AD can engage in reflective and entertaining autobiographical storytelling, potentially contributing to their sense of identity and connection with others.

A common question in the neuropsychological testing of patients with Alzheimer's Disease is whether or not patients should be tested in the presence of their spouses. We addressed this issue by assessing the neuropsychological performances of Alzheimer's Disease patients in the presence or absence of spouses. Results showed no significant differences between patients' performances in the presence or absence of spouses on tests assessing general cognitive abilities, episodic memory, working memory, inhibition and flexibility. No significant differences were observed regarding either anxiety or depression in patients when tested alone, compared to when spouses were attending. However, patients demonstrated higher verbal fluency when tested alone compared to when spouses attended. Clinicians may carry out neuropsychological assessment in the presence or absence of spouses, except when assessing verbal fluency. In such cases, clinicians should privilege testing patients alone or, if spouses attend the test, take into account this variable when interpreting patients' performances.