Online hypospadias support group data analysis

Reck, Carlos A.; Huber, Christiane; Horcher, Ernst

doi:10.1016/j.jpedsurg.2010.08.017

Cited by 13 publications

(6 citation statements)

References 27 publications

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“…Consistent with previous research on online support groups in other health conditions [50,53], members used the group to exchange experiences on symptoms and coping. Members particularly discussed anxiety and sadness related to symptoms and illness progression, echoing previous research which has highlighted the fear and uncertainty experienced by those with progressive NMDs [8,9] and the regret associated with declining ability to participate in valued activities [7].…”

Section: Discussionmentioning

confidence: 81%

The use of an online support group for neuromuscular disorders: a thematic analysis of message postings

Meade

Buchanan

Coulson

2017

Disability and Rehabilitation

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Purpose: People affected by neuromuscular disorders can experience adverse psychosocial consequences and difficulties accessing information and support. Online support groups provide new opportunities for peer support. The aim of this study was to understand how contributors used the message board function of a newly-available neuromuscular disorders online support group. Message postings (n=1,951) from the first five months of the message board of a newly-formed online support group for neuromuscular disorders hosted by a charitable organisation were analysed using inductive thematic analysis. Results: Members created a sense of community through disclosing personal information, connecting with people with similar illness experiences or interests, welcoming others, and sharing aspirations for the development of a resourceful community. Experiences, emotional reactions and support were shared in relation to: delayed diagnosis; symptom interpretation; illness management and progression; the isolating impact of rare disorders; and the influence of social and political factors on illness experiences. Methods: Conclusions:This study provided a novel insight into individuals' experiences of accessing a newly-available online support group for rare conditions hosted by a charitable organisation. The findings highlight how the online support group provided an important peer support environment for members to connect with others, exchange information and support, and engender discussion on political and social issues unique to living with often-rare neuromuscular disorders. Online support groups may therefore provide an important and easily accessible support outlet for people with neuromuscular disorders as well as a platform for empowering members to raise awareness about the impact of living with these conditions. Further research is needed to examine member motivations for using such groups and any effects of participation in greater detail.

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Section: Discussionmentioning

confidence: 81%

The use of an online support group for neuromuscular disorders: a thematic analysis of message postings

Meade

Buchanan

Coulson

2017

Disability and Rehabilitation

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“…In psychotherapy, the loss of body integrity, sexual fear and anger towards parents and the medical system are frequent concerns 52 . Importantly, engaging with (online) support groups, individual peer support and forging partnerships between communities, professionals and voluntary groups have proved beneficial for adolescents and adults living with DSDs and should be encouraged whenever possible 53 .…”

Section: Multidisciplinary Care In Adulthoodmentioning

confidence: 99%

Caring for individuals with a difference of sex development (DSD): a Consensus Statement

et al. 2018

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The term differences of sex development (DSDs; also known as disorders of sex development) refers to a heterogeneous group of congenital conditions affecting human sex determination and differentiation. Several reports highlighting suboptimal physical and psychosexual outcomes in individuals who have a DSD led to a radical revision of nomenclature and management a decade ago. Whereas the resulting recommendations for holistic, multidisciplinary care seem to have been implemented rapidly in specialized paediatric services around the world, adolescents often experience difficulties in finding access to expert adult care and gradually or abruptly cease medical follow-up. Many adults with a DSD have health-related questions that remain unanswered owing to a lack of evidence pertaining to the natural evolution of the various conditions in later life stages. This Consensus Statement, developed by a European multidisciplinary group of experts, including patient representatives, summarizes evidence-based and experience-based recommendations for lifelong care and data collection in individuals with a DSD across ages and highlights clinical research priorities. By doing so, we hope to contribute to improving understanding and management of these conditions by involved medical professionals. In addition, we hope to give impetus to multicentre studies that will shed light on outcomes and comorbidities of DSD conditions across the lifespan.

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“…Another tool of wise decision-making in ethical difficult cases is encouragement of support groups. They provide information, personal and professional support, shared experiences, and patient advocacy [Springer et al, 2011]. Parents of handicapped children gain understanding, receive support, and develop the ability to care for and be advocates for their child through parent-to-parent emotional and informational social support [DeHoff et al, 2016].…”

Section: Ethical Issuesmentioning

confidence: 99%

Optimal Management of Undescended Testis in Boys with Cerebral Palsy. A Debate

Springer

2019

Sex Dev

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Cerebral palsy is a rare condition following injury of the developing brain and including nonprogressive neurological disorders, spasticity, intellectual impairment and others. Boys with cerebral palsy have a high incidence of undescended testis. Although the motives for treatment (infertility, cancer prevention, psychological aspects, testicular torsion) are not different in boys without neurological impairment, the decision-making process in boys with cerebral palsy is very difficult. Besides medical and surgical arguments the discussion involves challenging ethical issues.

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Online hypospadias support group data analysis

Cited by 13 publications

References 27 publications

The use of an online support group for neuromuscular disorders: a thematic analysis of message postings

The use of an online support group for neuromuscular disorders: a thematic analysis of message postings

Caring for individuals with a difference of sex development (DSD): a Consensus Statement

Optimal Management of Undescended Testis in Boys with Cerebral Palsy. A Debate

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