Exploration of knowledge and understanding in patients with primary adrenal insufficiency: a mixed methods study.

BACKGROUND: Primary adrenal insufficiency (PAI) is a rare and severe condition requiring lifelong steroid replacement. During acute illness or stressful events, it is important to appropriately adjust glucocorticoid dose; failure to do so may lead to an adrenal crisis. The aim of the study was to explore patients PAI knowledge and understanding of the condition, steroid replacement adjustment during acute illness or stress and provided education. METHODS: Ten adult patients with PAI were purposefully recruited from two hospitals in a tertiary NHS Trust in England, UK. Data was collected using a mixed method approach utilising semi-structured audio-recorded interviews and hospital case note review. Interviews were transcribed verbatim and analysed using Burnard's content analysis framework. Information from the hospital case note review was captured using a matrix table based on pre-defined criteria. RESULTS: Four key themes emerged: 'Addison's disease and hydrocortisone replacement'; 'stress and corticosteroids'; 'patient compliance/adherence' and 'transition'. Patients reported feelings of 'going through a transition from uncertainty to adaption' following diagnosis. All participants had a good level of knowledge and understanding of required medication however application in times of need was poor. Medication adherence and prevention of a crisis relied not only on patient knowledge and application but also the support of family and health professionals. Health care professional knowledge required improvement to aid diagnosis and management of PAI. CONCLUSION: Patients with PAI did not apply existing knowledge to adjust steroid dose during acute illness or stress. Although a sample of limited size, our study identified there is a need to further explore why patients with Addison's disease do not apply existing knowledge during times of increased need. Future research should consider appropriate behaviour change interventions to promote medication adherence to reduce risk of an adrenal crisis.

Twin parenthood: the midwife's role--a randomised controlled trial.

OBJECTIVE: To determine whether a midwife-led intervention improved preparation for twin parenting and maternal psychosocial outcome. DESIGN: Randomised controlled trial. SETTING: Two maternity units in North East England. POPULATION: A cohort of 162 women with uncomplicated twin pregnancy. METHODS: Self-completion questionnaire at multiple time points. MAIN OUTCOME MEASURES: The primary outcome was probable postnatal depression (measured with the Edinburgh Postnatal Depression Scale, EPDS) 26 weeks after delivery. Secondary outcomes included preparation for parenting, maternal anxiety, parenting stress, and maternal wellbeing. RESULTS: The mean maternal EPDS scores at 26 weeks after delivery were 5.4 (SD 4.5) in the twin intervention (TI) group and 6.9 (SD 5.5) in the twin control (TC) group, and the mean difference between the groups was 1.5 (95% confidence interval, 95% CI, -0.2 to 3.3). The relative risk (RR) of having probable depression in the TI group compared with the TC group at 26 weeks was 0.48 (95% CI 0.19-1.20) for mothers and 0.84 (95% CI 0.42-1.70) for fathers. There were no statistically significant differences in maternal anxiety or parenting stress. TI mothers reported increased maternal wellbeing, reaction to motherhood, family support, mood, and greater self-confidence 26 weeks after delivery, and felt more prepared for parenting. CONCLUSION: As a result of the limited sample size, the study was unable to detect a difference in maternal depression using the maternal EPDS mean score. The antenatal preparation for parenting programme did not improve postnatal maternal anxiety or parenting stress; however, it did improve postnatal maternal wellbeing, mood, self-confidence, reaction to motherhood, and better prepared mothers to parent twin infants. Midwives have a key role in preparing mothers to parent twins.