‘Because it kind of falls in between, doesn’t it? Like an acute thing and a chronic’: The psychological experience of anaphylaxis in adulthood

Abstract

Anaphylaxis is a serious, rare condition increasing in prevalence. This study explored the psychological experience of adult-onset anaphylaxis from patient, family and staff perspectives. Semi-structured interviews were conducted with 12 participants. Two global themes emerged from thematic analysis: ‘controllability’ (‘an unknown and distressing experience’, ‘the importance of control over triggers’ and ‘responsibility but no control: the impact on others’) and ‘conflict’ (‘rejecting illness identity’, ‘minimisation of risk’, ‘accessing specialist care: running in slow motion’ and ‘patient-centred versus service-centred care’). Findings highlight the importance of perceived control and emphasise the presence of conflict in the experience of this complex, episodic condition.

“It's not an illness, it's just bad luck”: The impact of anaphylaxis on quality of life in adults

“…The need to maintain a healthy identity demonstrates the impact of anaphylaxis on physical and psychological QoL, illustrating the conflict the participants felt between having a potentially fatal condition and their personal beliefs around being healthy. Maintaining a healthy identity has been reported in a number of studies with children and adolescents with food allergy, and the findings from the current study also support those by Walklet et al on adults. It appears that the need to be seen as a healthy person and not be defined by anaphylaxis is not confined to a particular age, gender or allergenic trigger.…”

“…15,16 Only one study has examined the psychological experience of anaphylaxis in adult patients. Walklet et al 17 interviewed seven adult patients with anaphylaxis to venom, drugs, food-dependent exercise-induced anaphylaxis or spontaneous anaphylaxis. Thematic analysis revealed that controllability of anaphylaxis was very important.…”

Improving adrenaline autoinjector adherence: A psychologically informed training for healthcare professionals

“…Patients and clinicians report treatment-related, psychological, and organisational barriers to AAI adherence. 11,[30][31][32][33] A diagnosis of anaphylaxis can have psychosocial consequences that act as barriers to self-care behaviours, including effective use of AAIs. 22 Patients do not routinely update their AAI prescription, 34 and their carriage and use of AAIs is often poor.…”

“…4 Specialist allergy staff report feeling ill-equipped to manage the psychological factors associated with AAI adherence among patients with anaphylaxis, highlighting reasons such as time pressures, limited clinic space, and lack of confidence. 33 Anaphylaxis self-management plans have also been found to vary in quality and clinicianuptake. [40][41][42] Evidence from paediatric settings has found that staff led AAI training for parents and children can be effective in increasing adherence when it considers complex psychosocial factors which may be barriers to self-care behaviours, such as the attitudes of family members and carers to anaphylaxis and AAI use, and patients risk perceptions.…”

“…Research suggests barriers to AAI use are not solely practical but incorporate complex psychological features. Patients and clinicians report treatment‐related, psychological, and organisational barriers to AAI adherence . A diagnosis of anaphylaxis can have psychosocial consequences that act as barriers to self‐care behaviours, including effective use of AAIs .…”