Emotional and social repercussions of stroke on patient-family caregiver dyads: Analysis of diverging attitudes and profiles of the differing dyads

in PLoS ONE (2019), 14(4), 0215425

For patients, the social and emotional repercussions of stroke include shame, personality changes, and upheavals experienced by the couple (i.e. patient and main family caregiver). These impacts on the ... [more ▼]

For patients, the social and emotional repercussions of stroke include shame, personality changes, and upheavals experienced by the couple (i.e. patient and main family caregiver). These impacts on the couple ‘patient/family caregiver’ are scarcely documented. Focusing on the perceptions of the patients and the family caregivers living at home, two years after a stroke occurrence, the aims of the study were to analyse the concordance of attitudes towards the emotional and social repercussions of stroke and to determine the profiles of the differing dyads. Two researchers conducted separate face-to-face structured interviews with stroke survivors and their family caregivers. Eleven items, identified through a content analysis of interviews and after a qualitative process of generating questionnaire items, assessed the commonly experienced impact of stroke on the family, the social repercussions of stroke, and its emotional effects on the stroke survivors. The kappa concordance coefficient was used to determine the response convergence between patients and family caregivers. Four items, selected by a panel of experts, were included in logistic regressions (i.e., demographic characteristics and patients’ impaired functions) to identify the differing dyadic profiles. Family caregivers’ and patients’ attitudes towards the social repercussions of stroke were similar. Patients with motor deficiencies tended to underestimate the upheaval brought to their couple by stroke, whereas caregivers of language-impaired patients tended to underestimate their feelings of shame and demeaning. Communication disturbances, but also residual physical disabilities in stroke survivors, may affect the understanding of each other’s attitudes within dyads. In order to avoid dysfunctional relationships between family caregivers and patients, healthcare professionals need to pay special attention to this issue, especially in cases of aphasia and motor deficiencies. [less ▲]

Le changement de rôle des patients atteints de maladie chronique dans l'organisation des soins

in Pratiques et interventions en santé (2018)

Introduction: Les patients sont de plus en plus impliqués dans les soins qui exigent leur engagement dans la surveillance, la prévention des risques, l'auto-éducation et l'auto-traitement. Les ... [more ▼]

Introduction: Les patients sont de plus en plus impliqués dans les soins qui exigent leur engagement dans la surveillance, la prévention des risques, l'auto-éducation et l'auto-traitement. Les professionnels, quant à eux, ils sont plus enclins à adopter avec leurs patients des modèles d'interaction équitable. Sur le plan théorique, une Approche Patient Partenaire de Soins (APPS) a été proposée par des chercheurs canadiens. Pour clarifier ce que représente l’APPS, une étude qualitative a tenté d’analyser les facteurs culturels et psychosociaux qui interviennent dans la mise en place d’une APPS. Méthode : Avec l’appui des associations luxembourgeoises, six focus groupes ont été organisés avec 30 patients. A partir des retranscriptions, une analyse de contenu thématique catégorielle a été réalisée avec l’aide de N’Vivo 12 Résultats: Parmi les obstacles qui freinent une APPS, des divergences culturelles entre patients et professionnels de santé sont évoqués. Des patients préfèrent en effet rester en harmonie avec leurs valeurs et refusent de partager les prises de décision, pour eux seuls les professionnels doivent les prendre. Les échanges avec les professionnels restent compliqués car des positions dominantes et autoritaires demeurent. Parmi les facteurs favorisants APPS, on peut retenir le fait que les patients estiment avoir une connaissance de leur corps, et qu’ils ressentent l’impact que peut avoir les effets secondaires des traitements ; ceci à condition qu’ils soient capables de les verbaliser. Enfin l'accent est mis sur une confiance réciproque. Conclusion: Une éducation des patients devrait être développée pour leur permettre d’acquérir un «Capital Culturel en Santé» ; une connaissance de base favorisant la compréhension des soins et facilitant les relations avec les professionnels de santé. De même, une formation médicale et une pratique infirmière plus soutenues par des «Compétences Culturelles» permettaient aux professionnels de mieux reconnaître l'impact socioculturel que peut avoir leur identité lors de leurs relations avec les patients. [less ▲]

Inception of an Instrument on Health Capability of Family Caregivers

in Pracana, Clara (Ed.) Psychology Applications & Developments II (2016)

The health capability of family caregivers has already been studied through eight factors: physical and psychological functioning, lifestyle value, self-efficacy towards health services, family support ... [more ▼]

The health capability of family caregivers has already been studied through eight factors: physical and psychological functioning, lifestyle value, self-efficacy towards health services, family support, social capital, socio-economic conditions and access to health services. Our aim was to identify new factors. Family caregivers of stroke victims living at home were recruited in the Lorraine region (France; n=8) and Luxembourg (n=6). Semi-structured interviews about their health statuses, how they currently take care of their health, and the internal resources they need to achieve optimal health were conducted face-to-face. Verbatim transcriptions were open-coded and grouped into new factors of health capability. Items reflecting the main idea of the categories were formulated. Seven women and seven men (age 63.6±10.1) participated. Statements were regrouped together into new ways, giving rise to seven new emergent factors: health knowledge, health self-efficacy, health value, life skills, health decision-making, motivation, and attitude towards the future. Of them, 76 items were generated, 51 reflecting generic abilities while 26 being specific to family caregiving. Content analysis of these factors first allows guiding the preparation of innovative supports to promote health capability. Second, this list can serve as a basis to elaborate a guide to which clinicians can refer to, in orienting family caregivers according to their needs. Further research is needed to complete the validation of the HCFC instrument. [less ▲]

New domains of health capability of family caregivers: An exploratory study using the grounded theory.

in Pascara, Clara (Ed.) Clinical Psychology (2015)

Increased life expectancy, a declining economic growth, and the management of chronic diseases call for inter-generational solidarity but undermine the physical and psychological health of family ... [more ▼]

Increased life expectancy, a declining economic growth, and the management of chronic diseases call for inter-generational solidarity but undermine the physical and psychological health of family caregivers. Their health capability has already been studied through eight domains: physical and psychological functioning, lifestyle value, self-efficacy towards health services, family support, social capital, socioeconomic conditions and access to health services. Our aim was to identify new domains. Methods: A grounded theory method was applied. Family caregivers of stroke victims living at home were recruited in the Lorraine region (France; n=8) and Luxembourg (n=6). Semi-structured interviews were led face-to-face about their health status, how they currently take care of their health, and what internal resources they need to achieve optimal health. Verbatim were open-coded and grouped to form new domains of health capability. Items reflecting the main idea of the categories were formulated. Throughout the analyses, a control process was applied. Items were validated by consensus with an expert group. Results: Seven women and seven men (age 63.6±10.1) participated. Seven new domains emerged: health knowledge, health self-efficacy, health value, life skills, health decision-making, motivation, and attitude towards the future. 76 items were generated: 51 reflected generic abilities while 26 were specific to family caregiving. Discussion: Content analysis of these domains is highly instructive. First, it allows guiding the preparation of innovative supports to promote health capability, and second, this list can serve as a basis to elaborate a guide to which clinicians can refer to orient family caregivers according to their needs. [less ▲]