Dealing with the diagnosis of Parkinson's disease and its implications for couple functioning in the early stage: An interpretative phenomenological analysis.

BACKGROUND: For 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. METHODS: Fifteen 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. RESULTS: Three 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. CONCLUSION: These 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.

Dyadic processes and adjustment of couples experiencing a neurodegenerative disease: a meta-synthesis.

ABSTRACTNeurodegenerative diseases (NDDs) pose significant challenges to couple relationships. Existing research has predominantly focused on the impact of Alzheimer's disease (AD) on various types of dyads, resulting in significant advances in the field. However, despite a keen interest in transdiagnostic approaches , a comprehensive review addressing dyadic processes underlying the functioning of couple relationships across different NDDs is lacking. This meta-synthesis aimed to fill this gap by identifying, analysing, and integrating findings from qualitative studies examining couples facing different NDDs. Searches were conducted in four databases, identifying 35 articles meeting several inclusion criteria. A thematic synthesis was performed, identifying three interdependent themes : 'Disease-related challenges', 'Dyadic interactions', and 'Dyadic identity'. They emphasise that stress, social changes, the perception of time, and uncertainty are major challenges for partners.They also show how dyadic interactions such as communication are transformed and how partners strive to maintain their shared identity despite the progressive loss of the relationship's core components. This synthesis highlights key implications for clinical practice and future research, including the need to integrate disease-specific characteristics to interventions and understand the couple's functioning patterns and their evolution throughout the disease.

The relationship at the heart of the experience of daughter caregivers of a parent with dementia: An interpretative phenomenological analysis.

BACKGROUND: Parents with dementia require emotional, physical, psychological and financial support from their child caregivers to continue living at home. Daughter caregivers have been shown to be more involved in self-care and household tasks and to experience higher levels of distress than son caregivers. OBJECTIVE: The aim of this study was to investigate the experience of daughter caregivers who provide informal care for a parent with dementia living in their own home. METHOD: Semi-structured interviews were conducted with 11 daughter caregivers of a parent with Alzheimer's disease. Interviews were analysed using Interpretative Phenomenological Analysis. RESULTS: Three axes emerged from the analyses: [1] the before conditions the after: the quality of the previous relationship with the parent with Alzheimer's disease is a determining factor and allows the identification of three profiles of daughter caregivers: 'the grateful', 'the resentful' and 'the ambivalent', [2] when the relationship protects against the sense of burden: the feeling of being invaded by the caregiving situation is influenced by the quality of the relationship with the parent with Alzheimer's disease, and [3] alone or almost: the support network is desired when it is absent but kept at arm's length when it is present. DISCUSSION: The results underline the importance of assessing the quality of attachment and supporting the relationship with the parent (especially when the relationship prior to the disease was difficult). Daughter caregivers should also be encouraged to delegate tasks and refocus their actions related to their values. Family mediation sessions may be planned to improve the organisation of care and set up an efficient collaboration.

Couples facing the "honeymoon period" of Parkinson's disease: A qualitative study of dyadic functioning.

INTRODUCTION: The public health issue of the Parkinson's disease (PD) has led to a great deal of research that has highlighted the individual challenges faced by the person with the Parkinson's disease (PwPD) and the caregiving spouse. Few studies, however, have sought to understand the functioning of couples facing PD, by differentiating each stage, each of which has its own issues. In particular, the "honeymoon period", characterized by a symptomatic respite allowed by the effectiveness of treatments for motor symptoms, has been poorly documented, especially at the dyadic level. DESIGN AND METHOD: This qualitative study, based on Interpretative Phenomenological Analysis, aimed to understand the experience of couples and their functioning at this stage. Fifteen couples participated in separate semi-structured interviews for each partner. The analyses highlighted four dyadic dynamics, which call into question the relevance of the term "honeymoon" to describe the experience of couples. RESULTS: While some couples appear to adjust by means of flexible functioning and a positive reinterpretation of this experience, other dyads oscillate between rigid hyperprotection in the face of perceived distress or a vicious circle of control/avoidance and, in some cases, gradually slipping towards the erosion of the relationship. DISCUSSION: These results show that the relational difficulties suffered by partners at this stage should be taken into account as soon as possible after the diagnosis. Strengthening the communication and the togetherness between partners, as well as working on dyadic emotional regulation, are particularly relevant options for these couples.

Relationship Dynamics of Couples Facing Advanced-Stage Parkinson's Disease: A Dyadic Interpretative Phenomenological Analysis.

BACKGROUND/OBJECTIVE: Several studies have examined the impact of Parkinson's disease (PD) on the quality of couples' 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, "A Closeness That Separates," allows the identification of different patterns of interactions that lead to emotional distancing between the partners; the second, "The Adversity Is Not Unbearable, But Going It Alone Would Be," emphasizes the importance of how the assisting partner provides support; and the third, "Be Prepared for Anything and Facing an Uncertain Future," 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.