A qualitative investigation into the role of illness perceptions in endometriosis-related quality of life

Moore, Chloe; Cogan, Nicola; Williams, Lynn

doi:10.1177/13591053231183230

Cited by 5 publications

(2 citation statements)

References 42 publications

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“…The current study was conducted as part of a larger project examining illness perceptions in endometriosis (Moore et al, 2023). Only the measures relevant to the aims of the current paper will be described.…”

Section: Methodsmentioning

confidence: 99%

“…A topic guide incorporating open-ended questions and prompts was utilised for the semi-structured interviews (see supplementary materials). This guide was developed for a broader project on endometriosis-related perceptions (Moore et al, 2023). Participants were asked general questions relating to their endometriosis experiences before several prompts were employed to elicit further information relating to their coping styles, perceptions, and social support.…”

Section: Methodsmentioning

confidence: 99%

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A Mixed-Methods Investigation of Coping, Adaptation and Health-Related Quality of Life in Individuals Experiencing Endometriosis

Moore,

Cogan,

Williams

2024

Preprint

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Objectives Endometriosis is associated with reduced health-related quality of life (HRQoL). Coping has been linked to HRQoL in this population but longitudinal research to establish the impact of coping on HRQoL over time is lacking. Additionally, limited research has examined coping and adaptation to endometriosis from an in-depth qualitative or mixed-methods perspective. Therefore, adopting a mixed-methods approach, the current research aimed to investigate how individuals experiencing endometriosis coped and adapted to their condition, and the extent to which coping predicted HRQoL over time. Design A sequential, mixed-methods design incorporating a two-wave longitudinal survey and semi-structured interviews. Methods 408 UK-based participants diagnosed with endometriosis completed the baseline survey, measuring demographics, clinical factors, and coping with 283 completing the follow-up survey assessing HRQoL a year later. Data was analysed through hierarchical regression analysis. Meanwhile, 30 semi-structured interviews were conducted and analysed using reflexive thematic analysis. Findings were integrated by considering points of convergence, divergence, and complementarity between the datasets. Results Analysis of the quantitative data indicated an enduring impact of coping on HRQoL. Avoidant strategies and endometriosis-related information-seeking predicted reduced HRQoL, whilst trust in medical care exerted a protective function. Three themes were constructed from the qualitative data: disconnection from the body; balancing boundaries and self-care; and empowered adaptation. Integration of the datasets emphasised the significant impact of coping on HRQoL and wellbeing, revealing avoidance and positive adaptation as prominently employed coping strategies. Conclusions The results position coping as an important therapeutic target in endometriosis care, particularly through fostering empowerment and adaptation to support HRQoL.

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

A Mixed-Methods Investigation of Coping, Adaptation and Health-Related Quality of Life in Individuals Experiencing Endometriosis

Moore,

Cogan,

Williams

2024

Preprint

View full text Add to dashboard Cite

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A Template Thematic Analysis of Self‐Concept and Self‐Compassion in People Living With Endometriosis: Analysis of Qualitative Survey Responses

Mazalin,

Evans,

Van Niekerk

2024

Journal of Advanced Nursing

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AimsTo explore the influence of endometriosis on an individual's self‐concept and the potential applicability of self‐compassion in addressing alterations to self‐concept.DesignQualitative deductive template analysis study.MethodsWritten reflections completed by women (n = 157) with a self‐reported diagnosis of endometriosis were reviewed using a deductive template approach to gain an understanding of how people living with endometriosis view themselves in the face of the diagnosis.ResultsUtilising Neff's (2003) definition of self‐compassion, a series of themes emerged, with a higher number of reflections noted for each of the negative components of self‐compassion (self‐judgement, isolation, overidentification). Themes associated with negative changes to self‐concept centred around reflections of inadequacy, self‐blame, loneliness, withdrawal and avoidance, feeling misunderstood and judged by others, feeling like a burden and emotional suppression and numbing.ConclusionsEndometriosis influences three core domains of self‐concept for the person (personal, social and physical). These findings indicate that the components of self‐compassion therapy may be of relevance for healthcare providers in addressing the alterations to self‐concept experience by individuals living with endometriosis.Implications for Patient CareThis study supports the need for access to timely diagnosis and interdisciplinary care to buffer against the negative consequences for self‐concept. Nurses and allied healthcare professionals can use these findings to provide compassion‐focused care, with an emphasis on self‐kindness, common humanity and mindfulness for individuals with endometriosis.ImpactThis lived experience research highlights the influence of endometriosis on the personal, social and physical components of self‐concept, indicating a critical need to address self‐concept as part of endometriosis‐related treatment. Alterations to self‐concept may emphasise negative perpetuating cognitions and reinforce isolation, suppression of personal needs and self‐silencing.Patient or Public ContributionNo patient or public contribution.

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Queens of hearts: Exploring the lived experiences of mothers caring for infants with complex congenital heart disease in Sri Lanka

de Silva,

Gamage

2024

J Health Psychol

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This qualitative study explored the lived experiences of eight Sri Lankan mothers of infants with complex congenital heart disease (CCHD) using semi-structured interviews. Four themes were generated as: illness perception, communication with medical staff, challenges faced, and coping mechanisms. These provided insight into the multi-faceted nature of mothers’ experiences, importance of medical-caregiver communications and their need for psychosocial services. The findings enhance the limited knowledge of South–Asian primary CCHD caregiver experiences and will help in improving psychosocial support services in Sri Lanka.

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A qualitative investigation into the role of illness perceptions in endometriosis-related quality of life

Cited by 5 publications

References 42 publications

A Mixed-Methods Investigation of Coping, Adaptation and Health-Related Quality of Life in Individuals Experiencing Endometriosis

A Mixed-Methods Investigation of Coping, Adaptation and Health-Related Quality of Life in Individuals Experiencing Endometriosis

A Template Thematic Analysis of Self‐Concept and Self‐Compassion in People Living With Endometriosis: Analysis of Qualitative Survey Responses

Queens of hearts: Exploring the lived experiences of mothers caring for infants with complex congenital heart disease in Sri Lanka

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