TherapyThe spouses’ experiences of a Parkinson’s disease voice support group: An interpretative phenomenological analysis.
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Background: Parkinson’s disease is the second most prevalent neurodegenerative disease in the UK. Along with difficulties with mobility and balance, the majority of people with PD (PWPD) will have a deterioration in voice loudness and communication. A deterioration in communication can lead to a negative self-perception and difficulties forming relationships and support networks for the individual, whilst spouses often develop a caregiver burden and feeling of responsibility. Aims: This study aims to explore the experiences of a PD voice support group from the perspective of the spouse. This will clarify whether attending a PD-specific group has any potential benefits for the spouse in terms of coping in daily life, adjusting to the inevitability of living with a neurodegenerative condition and changes to support networks and friendship. Methods and Procedures: The study adopted a qualitative methodology to elicit the spouses’ experiences related to the study aim. In order to carry out an in-depth analysis of the data, an interpretative phenomenological analysis (IPA) was chosen, using semi-structured interviews as the method of collecting the data. The sample included three wives of husbands who had PD and who attended the support group. Outcomes and Results: The analysis of the interviews uncovered themes that were evident in all or some of the participant’s accounts. Results collated the wives’ experiences into six superordinate themes: burden, types of comparison, catalyst for change, facing inevitability positively, mutual trust and friendship and dependence. Conclusions and Implications: This study’s findings have highlighted similar themes related to burden and peer support from the spouses’ experience. In addition, it has been successful in adding to the currently limited evidence base of the experiences of spouses in living with progressive neurological conditions. Further research could consider the effectiveness of voice support groups in terms of social participation and potential impairment-based voice management for PWPD via a scaling-based methodology
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