The influence of Ehlers-Danlos syndrome – hypermobility type, on motherhood: A phenomenological, hermeneutical study

Baets, Stijn De; Vanhalst, Marieke; Coussens, Marieke; Rombaut, Lies; Malfait, Fransiska; Hove, Geert Van; Vanderstraeten, Guy; Velde, Dominique Van de

doi:10.1016/j.ridd.2016.11.017

Cited by 13 publications

(18 citation statements)

References 34 publications

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“…In other studies, participants reported being ignored and belittled by doctors, being accused of hypochondria or Munchausen's syndrome, or treated as a spectacle or objectified [13,14]. Others reported limited social participation due to fatigue, chronic pain or the risk of injury [15]. The impact of JHS/EDS-HT was also felt in the workplace, whether needing to work part-time, making adaptations, or taking early retirement due to symptoms [16].…”

Section: Introductionmentioning

confidence: 98%

Understanding the psychosocial impact of joint hypermobility syndrome and Ehlers–Danlos syndrome hypermobility type: a qualitative interview study

Bennett

Walsh

Moss

et al. 2019

Disability and Rehabilitation

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Purpose: Little attention has been paid to psychosocial factors in Joint Hypermobility Syndrome and Ehlers-Danlos Syndrome (Hypermobility Type). This study sought to identify the psychosocial impact by examining participants' lived experiences; and identify characteristics of effective coping. Materials and methods: Adults with Joint Hypermobility Syndrome and Ehlers-Danlos Syndrome (Hypermobility Type) were invited to discuss their own lived experiences and the impact of the condition. All met recognised criteria for clinically significant joint hypermobility, and had a self-confirmed diagnosis. The transcripts were coded and analysed using inductive thematic analysis. Results: 17 participants (14 women, 3 men) purposively selected to broadly represent different genders, ages and ethnicities. Analysis identified five key themes: healthcare limitations, a lack of awareness of Joint Hypermobility and Ehlers-Danlos Syndrome (Hypermobility Type) among healthcare professionals; a restricted life; social stigma; fear of the unknown; and ways of coping. Conclusions: The results highlight the significant psychosocial impact on participants' lives. Coping approaches identified included acceptance, building social networks, learning about joint hypermobility and adapting activities. Physiotherapists supported regular exercise. Further research should consider potential interventions to improve information provision, address psychological support and increase awareness of hypermobility among healthcare professionals.

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Section: Introductionmentioning

confidence: 98%

Understanding the psychosocial impact of joint hypermobility syndrome and Ehlers–Danlos syndrome hypermobility type: a qualitative interview study

Bennett

Walsh

Moss

et al. 2019

Disability and Rehabilitation

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show abstract

“…Many participants mentioned physical complications and pain was common in everyday life, as previously noted in the literature (Clark & Simmonds, 2011;De Baets et al, 2017;Palmer et al, 2016). Pain may be due to subluxations, tendinopathies, incongruent articular surfaces, proprioceptive deficits, nervous system sensitization and psychological inputs to the brain-self neuromatrix (Hakim, Malfait, & De Paepe, 2010).…”

Section: Reported Impacts Of Jhsmentioning

confidence: 79%

“…Many described having to change their activities of daily living and develop personal coping mechanisms. De Baets et al () also identified difficulty in managing energy levels to carry out usual activities, such as walking or gardening. Participants in that study discussed management options such as pacing, taking naps and prioritizing certain activities over others (De Baets et al, ).…”

Section: Discussionmentioning

confidence: 99%

“…De Baets et al () also identified difficulty in managing energy levels to carry out usual activities, such as walking or gardening. Participants in that study discussed management options such as pacing, taking naps and prioritizing certain activities over others (De Baets et al, ). In the current study, participants also commented on the importance of pacing activities, knowing their own limits and joining supportive groups such as the HMSA.…”

Section: Discussionmentioning

confidence: 99%

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The views of people with joint hypermobility syndrome on its impact, management and the use of patient‐reported outcome measures. A thematic analysis of open‐ended questionnaire responses

Palmer

Bridgeman

Pierro

et al. 2019

Musculoskeletal Care

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Introduction Joint hypermobility syndrome (JHS) has been reported to have widespread impacts on people with the condition. However, our understanding of those impacts is still developing and we do not know if they can be captured effectively using patient‐reported outcome measures. The aim of the present study was to explore written qualitative comments from previously administered questionnaires, to identify the impacts of JHS and any issues related to using patient‐reported outcome measures to assess those impacts. Methods Previous research administered a draft condition‐specific questionnaire and Short Form‐36 questionnaire to adult members of a patient organization in the UK, incorporating an open text box for further comments. Those comments were transcribed, anonymized and analysed using thematic analysis. A coding list, themes and subthemes were developed through double coding, parallel independent analysis and consensus. Results A total of 393 of 614 eligible questionnaires (64%) contained qualitative comments and were analysed (mean respondent age 41 years, mean Bristol Impact of Hypermobility questionnaire score 228/360, 95% women). Three main themes were identified: (a) “Impacts of living with JHS”; (b) “Management strategies for JHS”; and (c) “Measurement and research into JHS”. Participants highlighted a range of impacts of JHS, incorporating physical, social and psychological domains. Respondents described difficult journeys to diagnosis, and feeling unsupported and misunderstood by their peers and healthcare professionals. They detailed helpful strategies for managing their condition and provided useful comments on using questionnaires to assess JHS. Conclusions The study yielded valuable findings that can be used to directly inform the assessment and management of JHS.

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“…In line with other studies, we found that the withdrawal from activities and restrictions affecting the possibilities of being with friends and family resulted in distancing from others and feelings of being more isolated. De Baets et al () and (Berglund et al, ) claimed that JHS/EDS‐HT has a major impact on social behaviour and everyday life. In decision‐making activity, fear is described with experiences and presumptions of unmanageable pain and dislocation of joints (Schmidt et al, ), along with fear of physical movement in the form of kinesiophobia (Celletti et al, ).…”

Section: Discussionmentioning

confidence: 99%

Flexible bodies—Restricted lives: A qualitative exploratory study of embodiment in living with joint hypermobility syndrome/Ehlers‐Danlos syndrome, hypermobility type

Saetre

Eik

2019

Musculoskeletal Care

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Purpose The aim of this study was to explore embodiment as a meaning‐making experience in the daily life of Norwegian adults living with joint hypermobility syndrome/Ehlers‐Danlos syndrome, hypermobility type (JHS/EDS‐HT). The work of Drew Leder and his distinction between bodily dis‐ and dys‐appearance contributes to the description and analysis of individuals' bodily experiences of living with this chronic illness. Methods An explorative and qualitative design was applied to in‐depth interviews with seven participants. The theoretical framework was phenomenological, and the method of analysis was thematic, involving descriptive and interpretative approaches. Results Participants' bodily experiences were closely connected to a timeline viewing their illness in the past, the present and from future perspectives. The following central themes emerged from the data: (a) visible to invisible signs of a former body; (b) standing up and falling down of a present body; and (b) future thoughts of an inner and outer body. Conclusions The study found that living with JHS/EDS‐HT revealed complex experiences of having flexible bodies and restricted lives. Our findings also showed a meaning‐making process of embodied experiences that evolved over time, as well as a sliding transition from social to personal dys‐appearance. In the course of time, a bodily disruptions in social interactions comes to the fore, with invisible symptoms such as pain and fatigue. Individual bodily suffering determines the existence of hope or hopelessness regarding recovery from this condition.

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The influence of Ehlers-Danlos syndrome – hypermobility type, on motherhood: A phenomenological, hermeneutical study

Cited by 13 publications

References 34 publications

Understanding the psychosocial impact of joint hypermobility syndrome and Ehlers–Danlos syndrome hypermobility type: a qualitative interview study

Understanding the psychosocial impact of joint hypermobility syndrome and Ehlers–Danlos syndrome hypermobility type: a qualitative interview study

The views of people with joint hypermobility syndrome on its impact, management and the use of patient‐reported outcome measures. A thematic analysis of open‐ended questionnaire responses

Flexible bodies—Restricted lives: A qualitative exploratory study of embodiment in living with joint hypermobility syndrome/Ehlers‐Danlos syndrome, hypermobility type

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