Skin and Mucosa Care in Systemic Sclerosis – Patients' and Family Caregivers' Experiences and Expectations of a Specific Education Programme: A Qualitative Study

Kocher, Agnes; Adler, Sabine; Spichiger, Elisabeth

doi:10.1002/msc.1051

Cited by 10 publications

(9 citation statements)

References 37 publications

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“…Diary methods of assessing the frequency and duration of SSc-RP assume a paradigm of episodic RP attacks and preclude adequate capture of a phenomenon familiar to SSc clinicians and previously described by Jill Belch as 'what is for many patients the worst feature of the disease continual digital ischaemia' [45]. The phrase 'my constant companion' was used by a patient to describe SSc-RP in one qualitative research study to allude to the persistent threat and/or presence of digital ischaemic symptoms experienced by many patients with SSc [8].…”

Section: Duration Of Rp Attacksmentioning

confidence: 99%

The patient experience of Raynaud’s phenomenon in systemic sclerosis

et al. 2018

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RP is the most common manifestation of SSc and a major cause of disease-related morbidity. This review provides a detailed appraisal of the patient experience of SSc-RP and potential implications for disease classification, patient-reported outcome instrument development and SSc-RP clinical trial design. The review explores the clinical features of SSc-RP, the severity and burden of SSc-RP symptoms and the impact of SSc-RP on function, work and social participation, body image dissatisfaction and health-related quality of life in SSc. Where management of SSc-RP is concerned, the review focuses on the 'patient experience' of interventions for SSc-RP, examining geographic variation in clinical practice and potential barriers to the adoption of treatment recommendations concerning best-practice management of SSc-RP. Knowledge gaps are highlighted that could form the focus of future research. A more thorough understanding of the patient experience could support the development of novel reported outcome instruments for assessing SSc-RP.

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Section: Duration Of Rp Attacksmentioning

confidence: 99%

The patient experience of Raynaud’s phenomenon in systemic sclerosis

et al. 2018

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“…A recent systematic review identified 12 peer‐reviewed qualitative studies, including 380 patients, on the perspectives of patients with SSc , which found that patients face persistent uncertainties that undermine their self‐image, daily functioning, and identity. However, there are still knowledge gaps in the areas of information needs, attitudes to medications, self‐management, and support.…”

Section: Introductionmentioning

confidence: 99%

“It's Not Me, It's Not Really Me.” Insights From Patients on Living With Systemic Sclerosis: An Interview Study

Sumpton

Thakkar

O’Neill

et al. 2017

Arthritis Care & Research

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SSc inflicts major bodily and social restrictions that crush patients' identity and self-image. Uncertainties about the cause, diagnosis, and prognosis can undermine confidence in care, leading to anxiety and therapeutic nihilism. Access to psychosocial care to support the patients' role and functioning capacity, as well as communication and education that explicitly address their concerns regarding management may potentially improve treatment satisfaction, self-efficacy, adherence, and outcomes in patients with SSc.

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“…Qualitative methods can help evaluate patients’ experiences by identifying issues that would not arise within the prespecified boundaries of quantitative research . It has been recommended that complex interventions such as ERAS programmes should be assessed using both qualitative and quantitative methods , and this approach has previously been used successfully to explore patients’ experiences of various clinical programmes .…”

Section: Introductionmentioning

confidence: 99%

Patient experiences of perioperative nutrition within an Enhanced Recovery After Surgery programme for colorectal surgery: a qualitative study

et al. 2016

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AimNutrition is an important element of the Enhanced Recovery After Surgery (ERAS) programme. Patients have previously indicated that nutrition is a key component of ERAS that requires improvement. Our aim was to explore the perioperative nutrition experiences of colorectal surgical patients to identify barriers and facilitators to the integration of nutrition within ERAS.MethodSixteen individuals undergoing colorectal surgery participated in a semi‐structured interview between postoperative day three and hospital discharge. The topic guide was developed iteratively throughout the study; topics included preoperative counselling, carbohydrate loading, fasting and postoperative nutrition. A constant comparison technique was employed during coding, and an inductive thematic analysis was used. Validity was ensured by double coding a sample of transcripts.ResultsFindings are presented in the context of the following clinical themes: preoperative information, preoperative fasting, carbohydrate loading and nutritional drinks, postoperative diet and discharge. Individuals received too much general information which was repetitive, contradictory and not disease specific; this formed a key barrier affecting nutrition. Other barriers were negative experiences of nutritional drinks, stoma management, nausea and vomiting, and challenges from the hospital environment. Facilitators included interactions with staff, food accessibility and choice, and motivation for discharge.ConclusionThe key barrier to adherence of perioperative nutrition protocols was poor provision of information. Targeted information regarding postoperative diet, stoma management and coping with nausea and vomiting would be beneficial for colorectal surgical patients. Easily accessible food provided by ward staff was considered a facilitator.

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Skin and Mucosa Care in Systemic Sclerosis – Patients' and Family Caregivers' Experiences and Expectations of a Specific Education Programme: A Qualitative Study

Cited by 10 publications

References 37 publications

The patient experience of Raynaud’s phenomenon in systemic sclerosis

The patient experience of Raynaud’s phenomenon in systemic sclerosis

“It's Not Me, It's Not Really Me.” Insights From Patients on Living With Systemic Sclerosis: An Interview Study

Patient experiences of perioperative nutrition within an Enhanced Recovery After Surgery programme for colorectal surgery: a qualitative study

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