Family and friends experience and views following the death of a loved one from a primary adrenal insufficiency adrenal crisis - A qualitative exploratory study
I am grateful for the support that the ADSHG has given me in order to allow me the opportunity to undertake the following research. The area was identified by the ADSHG as an area that had not previously been explored and research was needed.
What is the study about?
The purpose of the research is to explore experience and views of losing a relative or friend with primary adrenal insufficiency (PAI) due to adrenal crisis. Appropriate steroid adjustment is required during times of illness, pain or severe psychological stress in order to mimic the body’s normal physiological response. Failure to manage acute illness sufficiently can be potentially life- threatening and have a major impact on patients, family and health care services due to increased complications, psychological stress and hospital admission. Recent studies have confirmed that patients do have a good level of knowledge and understanding of the condition and required medication; however, it is important to understand how patients apply their knowledge during an acute adrenal crisis. It has also been demonstrated that family and friends are an important support system to patients with PAI, not only in the diagnosis, but also in subsequent management. The aim of this study is to further understand the circumstances pertaining to a crisis through the experience and views of family and friends. Findings from the study will aid understanding of why patients with primary adrenal insufficiency experience an adrenal crisis and the processes they and their family and friends go through at this time. The identification of key themes will assist the development of an appropriate intervention and enhance behaviour change to reduce mortality and morbidity.
What is involved?
This study involves semi structured interviews lasting up to 45 minutes. Up to eight participants will be recruited, who are a family member (or a friend) of a deceased person who had PAI. Participants need to be 18 years old or over, speak English and have been involved/aware of the crisis event that led to the death of a loved one. If you are interested in participating in the study, please contact Lisa on 0121 424 2487.
Lisa Shepherd is an Advanced Nurse Practitioner in Endocrinology and, since 1999, she has worked at the Heart of England NHS Foundation Trust, which is now part of University Hospitals Birmingham NHS Foundation Trust. Within this role, she cares for patients with endocrine disorders. Part of this role and her research focus is the diagnosis and management of adrenal insufficiency and prevention of adrenal crisis.
More information about the Award can be found on the ADSHG website here or you can email enquiries to the Trustees. Recipients are asked to provide regular reports, for publication in the ADSHG newsletter.
Two further recipients of ADSHG grants have also provided reports on their work.
This article was first published in the September 2018 edition of the ADSHG newsletter.