RESUMO
Résumé Une analyse phénoménologique interprétative longitudinale des difficultés et des besoins non satisfaits rencontrés par les aidants de patients atteints de maladies neuro-dégénératives a été effectuée sur un groupe de 14 conjoints avant (T1) et après (T2) avoir participé à un groupe de psychoéducation de 6 mois. Lors du premier temps (T1), les aidants décrivent principalement une perte des échanges avec le patient, la solitude et la détresse qu'elle entraîne. Ils verbalisent également les difficultés de gérer la relation d'aide, en particulier leurs besoins non satisfaits de temps libre. Lors du second temps (T2) et sous les effets de la progression de la pathologie, ce sont nouvelles difficultés qui apparaissent, avec l'augmentation de la difficulté à gérer les pertes fonctionnelles et les troubles psychocomportementaux. Nos résultats suggèrent que la psychoéducation a aidé les soignants à faire face aux difficultés liées au fardeau objectif (besoin de temps personnel). Les interventions psychoéducatives devraient à l'avenir aborder davantage la relation dyadique et le besoin de soutien affectif de l'aidant, car il s'agit d'un besoin fort, non satisfait, des aidants. Des interventions de psychoéducation systématiques et répétées peuvent ainsi permettre de mieux identifier les difficultés et les besoins des aidants et de leur fournir une aide adaptée, tout particulièrement en ce qui concerne la relation de couple et l'état émotionnel des aidants. Abstract Psycho-education provides information, tools and support to caregivers, and a strong consensus favors the importance of tailoring psycho-education interventions to caregiver needs. Most studies assess needs cross-sectionally, neglecting the evolving nature of needs and challenges inherent to dementia and caregiving, failing to report on how psycho-educative interventions address or incorporate caregiver needs. The purpose of this study was to provide a qualitative and longitudinal assessment of the difficulties and unmet needs of spousal caregivers before and after participating in a psycho-education group. To investigate the difficulties and needs related to caregiving, before and after psycho-education participation, we used a longitudinal Interpretative Phenomenological Analysis (LIPA). LIPA is a prospective person-centered method that explores the lived experience of phenomena without formulating a priori hypotheses. The psycho-educational program was available to any informal caregiver of a person living with dementia (PLWD) in the Brussels region. The multimodal program contains: educational and practical information on dementia sessions with a neuropsychologist specialized in dementia, group sharing and support; home visits by a nurse for personalized assistance to caregivers, art therapy group: available for PLWD that could not be left unsupervised in conjunction with psycho-education sessions. Our study yielded three key findings: (1) caregivers described a loss of relational reciprocity with the person living with dementia at T1 and T2, and reported feeling distressed; (2) at T1, caregivers verbalised difficulties related to their role, the majority of them only identified the lack of personal time as an unmet need; (3) at T2, most caregivers had actively addressed their unmet need for personal time and used respite services to obtain personal time. Our findings would suggest that psycho-education helped caregivers to address difficulties related to objective burden (need for personal time). Psycho-education interventions should systematically and repeatedly assess caregiver difficulties and assist them in identifying their needs in order to provide adequate and tailored strategies and support.
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Cuidadores , Demência , Idoso , Humanos , Estudos ProspectivosRESUMO
The 'Help and Support for Caregivers and Patients' psycho-education group aims to educate and support dementia caregivers. Fourteen spousal caregivers were interviewed before (T1) and after (T2) psycho-education participation. Intrapersonal processes and the potential evolution of lived experience were explored using longitudinal interpretative phenomenological analysis. Three trajectory groups were identified at T1: proactive help-seekers, passive but hopeful caregivers and ambivalent caregivers. T2 interviews revealed that caregivers experienced growth in their role, benefitted from peer interactions, feelings of guilt were addressed and they were using out-of-home dementia-specific services. Identifying beliefs or attitudes that might prevent caregivers from getting help or support is important. Caregiver well-being remains a public health priority and furthering our knowledge about their complex and changing needs is paramount to provide well-designed and tailored resources.
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Cuidadores , Demência , Emoções , Esperança , HumanosRESUMO
The "Help and support for caregivers and patients program, (ASAPP) is a multidisciplinary project to better the interactions between unformal caregivers and patients living with a neurodegenerative disorder, by improving the disease understanding. OBJECTIVE: The aim of our study was to understand the trajectory, expectations and motivation of the caregivers to participate in the program. METHODS: 7 spousal caregivers participated in a semi-structural interview, whose results were analysed by means of a qualitative technique of phenomenological analysis. RESULTS: Three main themes emerged 1) loneliness, social isolation and emotional impact of the illness, 2) lack of time for themselves, and feelings of solitude, 3) expectations of improvement by the psychoeducational program. CONCLUSION: These results highlight the importance to understand the expectations of the caregivers to tailor the intervention program according to their main needs.
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Cuidadores/educação , Cuidadores/psicologia , Demência , Motivação , Idoso , Idoso de 80 Anos ou mais , Demência/terapia , Feminino , Humanos , MasculinoRESUMO
ABSTRACT Background: This investigation aimed to develop a screening tool based on the Cognitive Inventory of Subjective Distress (CISD). Two studies were designed in order to test the second-order factorial structure of the CISD, to shorten its length and to assess its replicability on a second large independent sample. Methods: We recruited a first sample (n = 290) living at home or in retirement centers and a second community-based sample (n = 1,429). The first sample completed the original CISD as well as cognitive, autonomy, anxiety, and depression assessments. The second sample completed the Short-CISD (S-CISD). Results: Factor analyses supported a second-order factorial structure allowing to engage in a refinement of the scale. We retained seven items corresponding to a dimension of cognitive schemas. Confirmatory Factor Analysis (CFA) demonstrated that the S-CISD exhibited satisfying psychometric properties as well as factorial replicability and structural invariance in two different samples. Further, the internal consistency of the S-CISD is acceptable. Conclusion: The S-CISD is a relevant screening tool for rapidly assessing psychological distress. It is directed towards old and very old individuals either living at home or in a retirement center, while also taking into account the fatigability and potential cognitive impairment of this population. This screening tool can be confidently used for psychopathological assessment and can serve as a baseline for following patients over time or in the course of therapy.
