Perceived Benefits and Factors that Influence the Ability to Establish and Maintain Patient Support Groups in Rare Diseases: A Scoping Review

Delisle, Vanessa C.; Gumuchian, Stephanie T; Rice, Danielle B; Levis, Alexander W.; ., .; Körner, Annett; Thombs, Brett D.

doi:10.1007/s40271-016-0213-9

Cited by 54 publications

(57 citation statements)

References 32 publications

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“…Social support was the most beneficial coping strategy reported in this study. Social support has been shown to help maintain well‐being and act as a buffer against distress and depression . In the current study, some of the participants knew others with the condition, or attended a support group, and really valued the understanding and support of people they felt understood their pain.…”

Section: Discussionmentioning

confidence: 80%

“…Social support has been shown to help maintain well-being and act as a buffer against distress and depression. 25,26 In the current study, some of the participants knew others with the condition, or attended a support group, and really valued the understanding and support of people they felt understood their pain. Peer support appeared to decrease feelings of shame for participants by normalizing the condition for them.…”

Section: Discussionmentioning

confidence: 89%

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A qualitative analysis of psychological distress in hidradenitis suppurativa

2019

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Summary Background Hidradenitis suppurativa (HS) can negatively impact on patients’ quality of life and is associated with a higher risk of depression, as well as difficulties in employment and relationships. Objectives This study sought to evaluate the lived experience of psychological distress in HS. Methods Structured interviews were conducted with 12 participants. These were later transcribed and analysed using thematic analysis. The transcripts and analysis were reviewed by an independent researcher. Results The results indicated that there were three main themes: shame, pain and coping mechanisms. Participants indicated that their feelings of shame were due to disgust at their symptoms. They feared that others would be disgusted if their symptoms were obvious. Participants reported feeling invalidated when others did not understand the severity of their pain. Additionally, they reported that pain left them with a sense of powerlessness over their own bodies. Regarding coping mechanisms, adaptive strategies included social support while maladaptive strategies included social withdrawal. Conclusions These findings are discussed in the context of the existing research on shame, chronic pain and psoriasis. The implications for psychological support for individuals with HS are evaluated. Additionally, the limitations of this study are considered and recommendations for future research are given. This study has highlighted that feelings of shame and physical pain are associated with psychological distress in HS. What's already known about this topic? Hidradenitis suppurativa (HS) has been shown to be associated with physical pain, a higher risk of depression, difficulties in sustaining employment and difficulties in relationships. Additionally, studies using quality‐of‐life measures have found more impairment in HS than in other dermatological conditions. What does this study add? Although the research to date has determined that there are negative social and emotional consequences associated with HS, the psychological processes underlying these impairments have not yet been looked at. This study aims to get a deeper understanding of the lived experience of psychological distress in HS and how individuals with HS attempt to manage this distress. What are the clinical implications of the work? This study has identified shame as a key feature that underlies the psychological difficulties experienced as a consequence of HS. When deciding upon appropriate psychological interventions for HS, approaches that specifically focus on reducing feelings of shame should be considered.

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Section: Discussionmentioning

confidence: 80%

Section: Discussionmentioning

confidence: 89%

A qualitative analysis of psychological distress in hidradenitis suppurativa

2019

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“…13 Patients and patient organizations play a critical role in rare disease European Reference Networks due to their expertise. 13,[41][42][43] Patients and/or their representatives become increasingly involved in addressing ethical issues, transparency in quality of care, safety standards, and contributing to research. 13,44,45 The involvement of representatives of patient support groups in this consensus conference allowed a unique perspective to all discussed aspects of patient care and management and emphasizes the benefits of collaboration as already proved in the past.…”

Section: Discussionmentioning

confidence: 99%

ERNICA Consensus Conference on the Management of Patients with Esophageal Atresia and Tracheoesophageal Fistula: Follow-up and Framework

et al. 2019

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Introduction Improvements in care of patients with esophageal atresia (EA) and tracheoesophageal fistula (TEF) have shifted the focus from mortality to morbidity and quality-of-life. Long-term follow-up is essential, but evidence is limited and standardized protocols are scarce. Nineteen representatives of the European Reference Network for Rare Inherited Congenital Anomalies (ERNICA) from nine European countries conducted a consensus conference on the surgical management of EA/TEF. Materials and Methods The conference was prepared by item generation (including items of surgical relevance from the European Society for Pediatric Gastroenterology Hepatology and Nutrition (ESPGHAN)-The North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) guidelines on follow-up after EA repair), item prioritization, formulation of a final list containing the domains Follow-up and Framework, and literature review. Anonymous voting was conducted via an internet-based system. Consensus was defined as ≥75% of those voting with scores of 6 to 9. Results Twenty-five items were generated in the domain Follow-up of which 17 (68%) matched with corresponding ESPGHAN-NASPGHAN statements. Complete consensus (100%) was achieved on seven items (28%), such as the necessity of an interdisciplinary follow-up program. Consensus ≥75% was achieved on 18 items (72%), such as potential indications for fundoplication. There was an 82% concordance with the ESPGHAN-NASPGHAN recommendations. Four items were generated in the domain Framework, and complete consensus was achieved on all these items. Conclusion Participants of the first ERNICA conference reached significant consensus on the follow-up of patients with EA/TEF who undergo primary anastomosis. Fundamental statements regarding centralization, multidisciplinary approach, and involvement of patient organizations were formulated. These consensus statements will provide the cornerstone for uniform treatment protocols and resultant optimized patient care.

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“…Access to support groups in SSc can potentially be improved by offering them in a virtual format. Indeed, a scoping review of facilitators and barriers for support groups across rare diseases found that holding support groups via teleconference was an important facilitator [18]. A recent systematic review of 17 studies of support groups for chronic health conditions concluded that using videoconferencing to deliver support groups is feasible and may improve the accessibility of support group interventions [19].…”

Section: Discussionmentioning

confidence: 99%

Reasons for not participating in scleroderma patient support groups: a comparison of results from the North American and European scleroderma support group surveys

Kwakkenbos

Carboni-Jiménez

Carrier

et al. 2019

Disability and Rehabilitation

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Purpose: Many people with scleroderma rely on peer-led support groups as a coping resource. Reasons for not attending support groups in scleroderma have been investigated only in North American participants. This study assesses reasons for nonattendance in European countries and compares results with previously published North American findings. Materials and Methods: The same 21-item survey as used in the North American sample assessed possible reasons for not attending scleroderma support groups. Proportions of items rated Important or Very Important were compared between samples. Results: Consistent with the North American survey findings (N ¼ 242), the two items most commonly rated as (Very) Important reasons for nonattendance among 228 European participants were (1) already having enough support (57%), and (2) not knowing of any local scleroderma support groups (58%). Compared to North American non-attenders, European patients were significantly more likely to rate not knowing enough about what happens at support groups (46% vs 19%), not having reliable ways to get to meetings (35% vs 17%), and being uncomfortable sharing experiences with a group (22% vs 11%) as (Very) Important reasons for nonattendance. Conclusions: Improving access to European support groups, providing education about support groups and group leader training may encourage participation. ä IMPLICATIONS FOR REHABILITATION Rehabilitation professionals might help develop local support groups for people with systemic sclerosis (scleroderma) to address the lack of access to these groups for many patients. The need for transportation and limited local accessibility may also be addressed by implementing online systemic sclerosis support groups. Professionals in the field of rehabilitation may work with people with systemic sclerosis and patient organizations to provide education about support groups to improve support group attendance in Europe.

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Perceived Benefits and Factors that Influence the Ability to Establish and Maintain Patient Support Groups in Rare Diseases: A Scoping Review

Abstract: Rare disease support groups are an important source of emotional and practical support for many patients. There is no trial evidence on the benefits of these groups and limited evidence on the perceived benefits and barriers and facilitators to establishing and maintaining them.

Cited by 54 publications

References 32 publications

A qualitative analysis of psychological distress in hidradenitis suppurativa

A qualitative analysis of psychological distress in hidradenitis suppurativa

ERNICA Consensus Conference on the Management of Patients with Esophageal Atresia and Tracheoesophageal Fistula: Follow-up and Framework

Reasons for not participating in scleroderma patient support groups: a comparison of results from the North American and European scleroderma support group surveys

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