Psychosocial determinants associated with quality of life in people with usher syndrome. A scoping review

Arcous, Marine; Putois, Olivier; Dalle-Nazébi, Sophie; Kerbourch, Sylvain; Cariou, Anaelle; Aïssa, Ines; Marlin, Sandrine; Potier, Rémy

doi:10.1080/09638288.2019.1571637

Cited by 13 publications

(14 citation statements)

References 33 publications

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“…However, there have also been reports of good health, positive outlooks and the positive meaning of everyday living (Dalby et al, 2009;Ellis and Hodges, 2013). A review of existing research on determinants that are associated with the quality of life of people with deafblindness due to Usher syndrome has found that the adjustment of living habits, maintaining hope for the future and a belief in one's own capacity to accomplish goals are important in maintaining a good quality of life (Arcous et al, 2019). Being an active agent in one's own life has also been identified when having to adopt to new situations due to a USH, which is a disease with a progressive course (Ehn et al, 2019).…”

Section: Deafblindnessmentioning

confidence: 99%

Health-Related Quality of Life, Family Climate and Sense of Coherence of Families in Which a Parent Has Deafblindness

et al. 2020

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Introduction: The consequences of living with deafblindness can be vast and have been described as concerning difficulties with communication, restrictions in the activities of daily living and a lack of independence. Deafblindness has also been associated with poor health-related quality of life. Little is known about parenting when having deafblindness or how the health and family climate of families in which a parent has deafblindness are affected. Aim: The aim of the study was to describe the health-related quality of life, sense of coherence and family climate in families where a parent has a deafblindness. Methods: A total of 38 individuals, of which 14 were parents with deafblindness and 6 were partners to the parent with deafblindness, and 18 children, were included. The participants answered questionnaires about their health-related quality of life, family climate and sense of coherence (comprehensibility, manageability, and meaningfulness). The Swedish age-relevant versions of the questionnaires were used. Due to the small number of participants, descriptive statistics were used to explore the results from the questionnaires. Results: The results revealed a pattern indicating that the health-related quality of life was affected, parents with deafblindness reported the poorest health-related quality of life. Sense of coherence was reported by all the family members as either moderate or low. The Family climate questionnaire revealed the positive aspect of closeness across family members, however negative aspects of chaos and expressiveness in the families were reported, mainly by, but not restricted to, the parents with deafblindness. Discussion: This study includes a small sample, too small to draw far-reaching conclusions. However, some interesting results need to be highlighted and discussed. When considering the family as a system, it is reasonable to assume that the family members contribute in different ways to how health and wellbeing is experienced in the

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Section: Deafblindnessmentioning

confidence: 99%

Health-Related Quality of Life, Family Climate and Sense of Coherence of Families in Which a Parent Has Deafblindness

et al. 2020

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“…Research oriented by psychoanalysis and based on the technical resources of the smartphone constitutes a new and promising field of investigation in the academic domain. The place acquired by psychoanalysis in some universities has indeed allowed the practice of interdisciplinarity ( Potier and Putois, 2018 ; Arcous et al, 2019 ), research in interaction with neuroscience ( Gerber et al, 2006 , 2011 ; Gerber and Peterson, 2006 ; Bazan, 2007 , 2015 ; Georgieff, 2007 , 2010 , 2011 ; Ansermet and Magistretti, 2011 ; Bazan et al, 2013 ), followed by evidence of treatment effectiveness from their evaluation ( Leichsenring et al, 2004 ; Leichsenring, 2005 ; Thurin et al, 2006 ; Shedler and Westen, 2007 ; Leichsenring and Rabung, 2008 ; Shedler, 2010 ; Fonagy et al, 2015 ; Thurin, 2017 ). Psychoanalysis has always had the potential to be irrigated by the life sciences on the one hand and the social sciences on the other.…”

Section: Discussionmentioning

confidence: 99%

“…As a part of the Light4deaf project, we were able to conduct pair interviews on a large cohort of patients with rare diseases involving deafness and blindness (Potier and Putois, 2018;Arcous et al, 2019). Retrospective analysis of the data will make it possible to identify the subjective problems that the disease induces, both socially and psychologically.…”

Section: Limitations and Perspectivesmentioning

confidence: 99%

The Digital Phenotyping Project: A Psychoanalytical and Network Theory Perspective

Potier

2020

Front. Psychol.

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“…To have strategies to concur difficulties when they occur ( Ehn et al, 2019 ) has also been described as positive as well as remaining active through work ( Ehn et al, 2016 , 2018 ) or by other engagements ( Ehn et al, 2019 ). Still, variables affecting the health of people with USH need to be studied from a life course, bio-psychosocial perspective to reveal possible interaction effects and consequences ( Arcous et al, 2019 ).…”

Section: Discussionmentioning

confidence: 99%

Similarities and Differences in Health, Social Trust, and Financial Situation in People With Usher Syndrome, a Bio-Psychosocial Perspective

Wahlqvist

Möller

et al. 2020

Front. Psychol.

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Purpose The primary aim was to describe the similarities and differences among the general health, physical health, psychological health, social trust, and financial situations of people with Usher syndrome (USH) types 1, 2, and 3. A second aim was to explore whether age, gender, clinical diagnosis, visual field, visual acuity, and degree of hearing impairment were associated with the general health, physical health, psychological health, social trust, and financial situations of people with USH. Methods In this study, 162 people with USH living in Sweden were included, and all three types of the disease were represented. Data concerning vision, hearing, and genetics were retrieved from the Swedish Usher database. Group comparison using frequencies, χ 2 -tests and Kruskal-Wallis tests for group comparison were used. To examine the effect of independent variables on poor health outcomes, a logistic regression analysis was conducted. Results Problems with poor health, social trust, and finances were found for all three types; however, more similarities than differences were found. The results of the regression model were ambiguous; it is not clear which independent measures contributed the most to poor outcomes. People with USH3 tended to report the most problems regarding the dependent outcome measures. Conclusion The observations of the associations between the independent variables and poor health, social trust and finances made in the present study are important to bear in mind in a rehabilitation setting; however, they do not fully explain how people with USH actually feel or rate their health. More research is needed to confirm the knowledge that exists within the clinical setting and the life stories told by the people with USH to merge existing knowledge into a rehabilitation setting based on evidence.

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Psychosocial determinants associated with quality of life in people with usher syndrome. A scoping review

Cited by 13 publications

References 33 publications

Health-Related Quality of Life, Family Climate and Sense of Coherence of Families in Which a Parent Has Deafblindness

Health-Related Quality of Life, Family Climate and Sense of Coherence of Families in Which a Parent Has Deafblindness

The Digital Phenotyping Project: A Psychoanalytical and Network Theory Perspective

Similarities and Differences in Health, Social Trust, and Financial Situation in People With Usher Syndrome, a Bio-Psychosocial Perspective

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