Family attitudes, actions, decisions and experiences following implementation of deemed consent and the Human Transplantation (Wales) Act 2013: mixed-method study protocol
نویسندگان
چکیده
INTRODUCTION The Human Transplantation (Wales) Act 2013 (the Act) introduced a 'soft opt-out' system of organ donation on 1 December 2015. Citizens are encouraged to make their organ donation decision known during their lifetime. In order to work, the Act and media campaign need to create a context, whereby organ donation becomes the norm, and create a mechanism for people to behave as intended (formally register their decision; consider appointing a representative; convey their donation decision to their families and friends or do nothing-deemed consent). In addition, family members/appointed representatives need to be able to put their own views aside to support the decision of their loved one. The aim of this study is to evaluate initial implementation, outcomes and impact on families and appointed representatives who were approached about organ donation during the first 18 months. METHODS AND ANALYSIS Prospective mixed-method coproductive study undertaken with National Health Service Blood and Transplant (NHSBT), and multiple patient/public representatives. The study is designed to collect information on all cases who meet specified criteria (≥18 years, deceased person voluntarily resident in Wales and died in Wales or England) whose family were approached between 1 December 2015 and 31 June 2017). Data for analysis include: NHSBT routinely collected anonymised audit data on all cases; Specialist Nurse in Organ Donation (SNOD) completed anonymised form for all cases documenting their perception of the families' understanding of the Act, media campaign and outcome of the donation approach; questionnaires and depth interviews with any family member or appointed representative (minimum 50 cases). Additional focus groups and interviews with SNODs. Anonymised donation outcomes and registration activity reports for Wales provide additional context. ETHICS AND DISSEMINATION Approved by NHSBT Research, Innovation and Technology Advisory Group on 23 October 2015; Wales Research Ethics Committee 5 (IRAS190066; Rec Reference 15/WA/0414) on 25 November 2015 and NHSBT R&D Committee (NHSBT ID: AP-15-02) on 24 November 2015. REGISTRATION The protocol is registered on the Health and Care Research Wales Clinical Research Portfolio. Study ID number 34396, www.ukctg.nihr.ac.uk.
منابع مشابه
Combating Illegal Organ Transplantation Under International Human Rights Law
Despite the fact that the concepts of organ transplantation and organ trafficking seem two completely distinct categories at first glance, sometimes they overlap with each other. This is especially in cases in which organ transplantation occurs from one country to another and for a financial exchange. There are two general indicators for determining the distinction between organ transplantation...
متن کاملExploring of Living Donors’ Experiences Following Liver Transplantation: a qualitative descriptive study
Background and Objectives: The main challenge in liver transplantation is shortage of donor organs, and using living donor live transplantation (LDLT) has been considered as a new strategy. This study aimed to explore the concept of liver transplantation in living donors’ experiences after donating. Materials and Methods: A qualitative study with qualitative descriptive approach was co...
متن کاملRole of quality of care and treatment in faciliting decision making and consent to organ donation in brain dead family: a qualitative study
Background: Caring for family is essential for organ donation request and decision making process and nurses are responsible for family caring. Aim: the present study have performed to explore the role of quality of care and treatment in facilitating decision making and consent to organ donation in family of the brain death patient. Methods: A qualitative research approach with its focus on th...
متن کاملLiving in Home Quarantine: Analyzing Psychological Experiences of College Students during Covid-19 pandemic
Background and Aim: The Covid-2019 is a pneumonia that onset on December 31, 2019 in Wuhan, China, and then swept the world. Following the disease in Iran, people began a new life in quarantine to be safe. Quarantine life is accompanied by psychological, social and economic consequences, and its implementation requires the support, supervision and adherence of the country's medical staff. This ...
متن کاملChallenges of Achieving Green Hospital Criteria: A Mixed Method Research in Iran
Background and Aim: Green Hospital is a concept that protects the environment from destructive human actions. It has emerged to achieve the goals of sustainable development, following the world wars, the industrial revolution, and the increment of environmental destruction. Further, Hospitals have moved towards the implementation of green hospital criteria according to their social responsibili...
متن کامل