6 research outputs found
Growing up with a rare genetic disease: an interpretative phenomenological analysis of living with Holt-Oram syndrome
info:eu-repo/semantics/publishe
The subjective experience of patients suffering from a rare genetic pathology: Rendu-Osler-Weber disease
info:eu-repo/semantics/nonPublishe
Relationship Dynamics of Couples Facing Advanced-Stage Parkinsonâs Disease: A Dyadic Interpretative Phenomenological Analysis
International audienceBackground/Objective Several studies have examined the impact of Parkinsonâs disease (PD) on the quality of couplesâ relationships. To date, few studies have explored how couples experience their relationship dynamic by taking into account the disease stage. The objectives of this study were to understand the experience of each partner and to study the mechanisms that underlie their couple organization in the advanced stage of PD. Methods Semistructured individual interviews conducted with fifteen patients and their partners were the subject of a dyadic interpretative phenomenological analysis. Results Three themes were identified from the analysis: the first, âA Closeness That Separates,â allows the identification of different patterns of interactions that lead to emotional distancing between the partners; the second, âThe Adversity Is Not Unbearable, But Going It Alone Would Be,â emphasizes the importance of how the assisting partner provides support; and the third, âBe Prepared for Anything and Facing an Uncertain Future,â reveals the extent and modes of the dyadic regulation of the emotions linked to what the future may hold. Conclusion Psychological support is important to help couples express both their feelings and their respective needs in the evolving context of PD
Dealing with the diagnosis of Parkinson's disease and its implications for couple functioning in the early stage: An interpretative phenomenological analysis.
BackgroundFor couples facing Parkinson's disease, marital relationships are significantly impacted, even at the early stages of the disease. However, very few studies have explicitly explored the functioning of the couple and how both partners deal with Parkinson's disease. The aim of this study was to explore the experiences and strategies of couples facing Parkinson's disease in the early stage using dyadic interpretative phenomenological analysis.MethodsFifteen couples agreed to participate in the study. Semistructured interviews were conducted with each partner separately regarding his or her individual experience with Parkinson's disease, the couple's history, the impact of the diagnosis on the functioning of the couple, and his or her projections for the future.ResultsThree higher-order themes emerged from the analyses. The first theme, "Being tested by the diagnosis", highlights 4 dyadic configurations according to the individual's and the couple's capacity for adjustment following the diagnosis: "noncongruent", "collapsed", "relieved" and "avoidant". The second theme, "Talking about everything except the disease", underlines that communication about the disease is often avoided both within the couple and with relatives to protect the persons with Parkinson's disease or respect their wishes. The third theme, "Supporting each other", describes the different levels of harmony between the two partners in the management of daily life and symptoms and their relational impacts.ConclusionThese results allow us to better understand the experiences of both partners and to highlight the importance of promoting better acceptance of the diagnosis by persons with Parkinson's disease to allow better communication between partners and with relatives. Such support prevents disease-specific distress and facilitates better adjustment in the later stages of the disease
The Subjective Experience of Patients Diagnosed with Hereditary Hemorrhagic Telangiectasia: a Qualitative Study
The aim of the present study was to understand the context and psychological impact for patients diagnosed with hereditary hemorrhagic telangiectasia (HHT). Semi-structured interviews were conducted with 9 patients affected by HHT, and the transcripts were analyzed using interpretative phenomenological analysis. The results of this study allowed us to propose a new hypothesis to explain the delay in diagnosis: the trivialization of symptoms associated with HHT. Moreover, the results showed that a genetic diagnosis of HHT results in emotional shock, uncertainty about the future, and worry about oneâs children in parents who are confronted with the dilemma of facing the reality of the diagnosis or delaying dealing with the diagnosis until disease onset. Family and personal perceptions of the disease influenced not only the delay in diagnosis but also the emotional and behavioral reactions of patients following a genetic diagnosis.SCOPUS: ar.jinfo:eu-repo/semantics/publishe