Exploring Sources of Emotional Distress among People Living with Scleroderma: A Focus Group Study

Gumuchian, Stephanie T; Peláez, Sandra; Delisle, Vanessa C.; Carrier, Marie Eve; Jewett, Lisa R.; El‐Baalbaki, Ghassan; Fortune, Catherine; Hudson, Marie; Impens, Ann; Körner, Annett; Persmann, Jennifer; Kwakkenbos, Linda; Bartlett, Susan J.; Thombs, Brett D.

doi:10.1371/journal.pone.0152419

Cited by 22 publications

(22 citation statements)

References 34 publications

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“…psoriasis and atopic dermatitis) has reported lower health-related quality of life (HRQoL) 7 and negative impacts on psychosocial functioning. 8,9 The rarity of morphoea poses particular challenges with respect to gaps in knowledge about its aetiology, prognosis and treatment [10][11][12] and also about the HRQoL of individuals with this disorder. 13 To date, little has been written on HRQoL in paediatric patients with morphoea, specifically facial subtypes.…”

Section: What Does This Study Add?mentioning

confidence: 99%

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Children with facial morphoea managing everyday life: a qualitative study

et al. 2018

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Understanding what it is like to live with facial morphoea from the perspectives of children and parents is important for devising ways to help children with the disorder achieve a better quality of life. Healthcare providers can help families access resources to manage anxiety, deal with bullying and construct adequate explanations of facial morphoea, in addition to providing opportunities for peer support.

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Section: What Does This Study Add?mentioning

confidence: 99%

“…The rarity of morphoea poses particular challenges with respect to gaps in knowledge about its aetiology, prognosis and treatment and also about the HRQoL of individuals with this disorder . To date, little has been written on HRQoL in paediatric patients with morphoea, specifically facial subtypes .…”

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confidence: 99%

Children with facial morphoea managing everyday life: a qualitative study

et al. 2018

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“…Previous research has flagged understanding of SSc and its consequences as well as personal control and emotional representations as the main differences in perceptions between patients and rheumatologists or general practitioners [ 8 ]. Studies have also indicated that patients feel physicians are dismissive of their concerns regarding topics such as leisure and social activities, sexuality or parenting [ 9 , 14 ]. We found that patients mainly provided information that physicians were seeking, and felt intimidated or embarrassed about asking questions related to managing symptoms and how this affects their working life or their relationships.…”

Section: Discussionmentioning

confidence: 99%

Things left unsaid: important topics that are not discussed between patients with systemic sclerosis, their carers and their healthcare professionals—a discourse analysis

Denton

Laird²,

Moros

et al. 2020

Clin Rheumatol

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Introduction Systemic sclerosis (SSc) is a rare condition that can be complicated by interstitial lung fibrosis (SSc-ILD)—a major cause of mortality. This study explored information and communication needs of patients with SSc-ILD and their carers to understand what they are and whether they are met. Methods Qualitative research was performed, including in-depth individual interviews and observed conversations between pairs of patients, physicians and nurses, and between patients and physicians discussing experiences of SSc-ILD. The study was performed in Germany, Italy, Spain, the UK and the USA. Participants included 42 SSc-treating physicians, 21 patients with diagnosed SSc-ILD, 16 specialist nurses and five carers. Results Prognosis and mortality were the main unspoken topics acknowledged by patients, carers and healthcare professionals. Patients and carers felt afraid to ask physicians about mortality, and most physicians reported avoiding the question because their duty was to give patients hope and avoid causing additional distress. Patients often felt unable to ask physicians about relationships, family and work because of time constraints or because they felt these were not topics physicians would be concerned about. Often, specialist nurses felt that they had insufficient knowledge to provide adequate support. Conclusion Key topics, including mortality and prognosis, are rarely openly discussed, leaving patients uncertain and anxious about the future. By communicating about difficult but important topics, physicians and nurses could help patients and carers manage and plan their lives. This study shows that a multi-professional team-based communication approach is likely to better address patient needs and priorities. Key Points • Key topics in SSc or SSc-ILD, such as mortality and prognosis, are rarely openly discussed in clinical consultations. • By communicating difficult but important topics, physicians and nurses could help patients manage their disease and plan their lives. • A multi-professional team-based communication approach is likely to better address patient needs and priorities and could be easily implemented without the need for significant additional resources.

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“…Findings from this study are consistent with other studies of physician-patient communication within consultations and their impact on emotional well-being. Both a lack of empathy from HCPs and their unwillingness to discuss aspects not specifically related to SSc have previously been cited by patients as a great source of emotional distress [17]. Additionally, patient's dissatisfaction has been shown to relate to the absence of a holistic approach to care and due to a lack of tact by physicians, who they felt had little interest in their suffering [13].…”

Section: Discussionmentioning

confidence: 99%

Challenges in physician-patient communication for optimal management of systemic sclerosis-associated interstitial lung disease: a discourse analysis

Denton

Laird²,

Moros

et al. 2020

Clin Rheumatol

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Introduction Systemic sclerosis (SSc) is a rare, potentially life-threatening condition. The prognosis is difficult to predict, and treatment is complex. This can be difficult to understand or explain, posing challenges for effective physician-patient communication. Our study assessed communication between physicians and patients with systemic sclerosis-associated interstitial lung disease (SSc-ILD) to identify information gaps and needs. Methods Twenty-three 20-min consultations between physicians (rheumatologists, pulmonologists) and patients (19 real, 4 actors) with diagnosed SSc-ILD across 6 countries were observed and recorded. Interactional sociolinguistic discourse analysis was used to understand the pattern and meaning of communication, whether the needs of both participants were met, and the level of understanding between participants. Results In most consultations, patients were given little opportunity to explain their concerns or ask questions. Physicians used plain language but would revert to medical terminology for complex issues. Patients would also use medical terminology, despite not fully understanding the terms, which led to some physicians mistakenly believing that patients had a better understanding than they did. Differences in cognitive models between physicians and patients were often responsible for misunderstandings. However, during effective consultations, patients were invited to tell their story, and physicians used techniques to check and demonstrate understanding, express empathy and build rapport. Conclusions Communication challenges between physicians and patients limit joint understanding of SSc-ILD and may result in both parties misunderstanding important information and patients being less aware of self-help management approaches. Strategies should be developed with physicians to facilitate effective communication and increase patient understanding and support. Key Points • Physicians and patients have different explanatory models for SSc-ILD. • The differences between the physician-constructed model of SSc-ILD and the personal model patients construct often result in misunderstandings. • Many patients with SSc have learned the medical terminology for their condition, but their often limited understanding may lead to missed opportunities for physicians to provide clear explanations and correct misperceptions. • The style of consultation determines the information patients share and the degree to which they feel supported by, and confident in, their physicians' care.

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Exploring Sources of Emotional Distress among People Living with Scleroderma: A Focus Group Study

Cited by 22 publications

References 34 publications

Children with facial morphoea managing everyday life: a qualitative study

Children with facial morphoea managing everyday life: a qualitative study

Things left unsaid: important topics that are not discussed between patients with systemic sclerosis, their carers and their healthcare professionals—a discourse analysis

Challenges in physician-patient communication for optimal management of systemic sclerosis-associated interstitial lung disease: a discourse analysis

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