Sandra Kearney

Flinders University

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Ann Donohoe

University College Dublin

ÉM

Éilish McAuliffe

University of Cape Town

Riria Hotere-Barnes

Ministry of Business, Innovation and Employment

Ni Na Camellia Ng

Hong Kong Shue Yan University

Ashleigh McLarin

Victoria University of Wellington

Sumi Kim

Dongguk University

Katie Robinson

University of Limerick

O Corcoran

University Hospital Waterford

Kelley

Seattle University

Eimear Lyons

University of Limerick

Cooperative Institutions

University College Dublin

University of Limerick

Health Research Board

University Hospital Waterford

Ministry of Business, Innovation and Employment

Royal College of Surgeons in Ireland - Bahrain

Royal College of Surgeons in Ireland

Hong Kong Shue Yan University

Victoria University of Wellington

Dongguk University

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Participatory action research: an effective tool to enhance occupational therapy services for people with chronic pain in Ireland

Eimear Lyons Barbara Brennan O Corcoran B. Irudayaraj Sandra Kearney

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Exhibition Reviews

Museum Worlds (2021)

Sheila K. Hoffman Tanaka Aya Xue Bai Ni Na Camellia Ng Mingyuan Jiang

Museum of Russian Icons, Clinton, Massachusetts by Sheila K. Hoffman Local Cultures Assisting Revitalization: 10 Years Since the Great East Japan Earthquake, National Museum of Ethology (Minpaku), Osaka by Aya Tanaka Tianjin Museum of Finance, Tianjin by Bai Xue Vegetation and Universe: The Collection of Flower and Bird Paintings, Zhejiang Provincial Museum, Hangzhou by Ni Na Camellia Ng Three Kingdoms: Unveiling the Story, Tokyo National Museum and Kyushu National Museum, Japan, and China Millennium Monument, Nanshan Museum, Wuzhong Museum, and Chengdu Wuhou Shrine, People’s Republic of China by Mingyuan Jiang Tempest, Tasmanian Museum and Art Gallery, Hobart by Ashleigh McLarin Wonders from the South Australian Museum, South Australian Museum, Adelaide by Sandra Kearney Brett Graham, Tai Moana, Tai Tangata, Govett Brewster Art Gallery, New Plymouth by Riria Hotere-Barnes The “Inbetweenness” of the Korean Gallery at the Musée Guimet, Paris by Sumi Kim

National museum

Tempest

10.3167/armw.2021.090114

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Identifying the Optimum Role and Function of an Epidermolysis Bullosa (EB) Outreach Nurse

Ann Donohoe Sandra Kearney Éilish McAuliffe

Epidermolysis Bullosa (EB) is the term used to describe a group of rare genetic skin disorders which result in the extreme susceptibility to blister following friction. EB is a lifelong, life limiting condition present from birth. While a multidisciplinary approach to care is advocated, research indicates that service provision for patients with EB can be disjointed, inaccessible and inequitable. In an effort to address shortcomings in current service provision, DEBRA Ireland is working towards the development of an EB Community Care Programme. A central feature of this programme is the development of an EB outreach nurse service which will focus on providing co-ordinated care for patients, including community and home-based services. The School of Nursing and Midwifery at University College Dublin, in collaboration with the Dystrophic Epidermolysis Bullosa Research Association (DEBRA) of Ireland was awarded funding from the Irish Research Council ‘New Foundations’ Scheme, to conduct a study which would inform the development of this innovative nursing service. The primary aim of the study was to determine how the role of the EB outreach nurse could be developed to meet the healthcare needs of people with EB. A participatory action research approach was used to guide the development of the investigation. Consequently, a central feature of the research involved working in partnership with a steering committee on the study’s research design.

Outreach

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Living with epidermolysis bullosa: Daily challenges and health‐care needs

Health Expectations (2019)

Sandra Kearney Ann Donohoe Éilish McAuliffe

Abstract Background & Objective Epidermolysis bullosa (EB) is the term used for a group of genetic skin fragility disorders. For those living with EB, pain represents a constant challenge, with blistering and tasks such as changing dressings, adding to the distress. This paper focuses on describing and exploring the health‐care needs of children, adults and families who are affected by EB. The specific aim of the paper is to identify the needs of the EB population with a view towards informing the development of a community liaison service to support adults living with EB and the parents/carers of children living with EB. Setting and Participants Interviews with six adults and the parents of eight children with EB were conducted. The data were analysed thematically. All participants were resident on the island of Ireland and are therefore reflecting on services in this geographic region. Results Participants’ needs were grouped into five themes: support managing physical health‐care issues; access to community/home‐based services; EB‐specific information and psychosocial support; effective interaction with health‐care professionals; and advice regarding benefits and entitlements. Discussion and Conclusions This article represents the health‐care needs and preferences of a broad spectrum of those with EB, highlighting the need for a comprehensive service regardless of the severity of the condition.

Needs assessment

10.1111/hex.13006

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