Based on literature reviews, a previous qualitative study and cognitive debriefing interviews, and in consultation with an expert panel, a 45-item (pregnancy) and a 49-item (postnatal) self-report questionnaire were designed, enabling assessment of important psychosocial issues for women with T1DM during pregnancy and in the immediate postnatal period. Rigorous design of the questionnaires was the necessary first stage in a program of research to enable systematic assessment of facilitators and barriers to self-management and psychological well-being of women with T1DM in the transition to motherhood.
The results of the study indicate that the questionnaires have good face and content validity, which was established in several ways. First, the literature review and previous qualitative research informed the questionnaires’ conceptual framework and item generation. Second, during the cognitive debriefing interviews, the participating women judged the questionnaire items to be relevant as well as having sufficient clarity and readability. They identified additional areas for inclusion, for which items were developed and piloted in a second round. Third, the questionnaire items were assessed to be relevant and appropriate by the research team and expert panel, comprising internationally recognised researchers and clinicians with expertise in diabetes education, nursing, psychology and endocrinology, as well as consumer representatives.
An overview of the final questionnaires endorses the fact that life transitions are personal experiences [31
]. Transitions are diverse and complex, may involve uncertainty, can be sequential or simultaneous, and often occur in multiples that compound the effect of transitions [5
]. Transitions involve a change in health status, role relations, expectations, or abilities [5
Psychological wellbeing is integral to the questionnaires because the concept is associated with one's ability to express or release one’s inner feelings [38
]. Psychological well-being is a multifaceted concept which implies an ease with oneself and around others and determines one's ability to effectively and successfully manage challenges [38
]. Ruff [38
] identified six areas of psychological well-being, which are now more commonly referred to as positive well-being, reflecting the focus on the affirmative nature of the constructs: autonomy, environmental mastery, personal growth, positive relations with others, purpose in life, and self-acceptance. Those concepts have been identified as relevant in diabetes care [40
], and in the current study, items were developed to assess women’s abilities to cope, their sense of optimism and beliefs in personal control over the combined demands of T1DM and pregnancy.
Women with T1DM face several specific challenges during pregnancy, childbirth and in the postpartum period. In particular, women in this study highlighted their unpreparedness for the challenges of breastfeeding and maintaining optimal blood glucose levels to ensure that neither they nor their baby were at risk due to hypoglycaemia. They lacked knowledge, skills and support from health professionals. It is therefore of vital importance to consider their need for specific support in early postpartum [13
]. More research about the critical postnatal period is needed among healthcare providers and experiences need to be shared both ways between the women and their healthcare providers. The postnatal version of the questionnaire will enable assessment of the needs of women with T1DM in the postnatal period. ‘The sample size of the current study did not allow for fully exploration of any parity-related differences in women responses, e.g. anxiety levels among multiparous women could either be elevated or diminished depending on previous experience. A large-scale study would be able to better identify if support and information needs differ between primiparous and multiparous women with T1DM’.
For all women in the postpartum period (regardless of a diabetes diagnosis), it is important that early signs of postnatal depression are detected and managed appropriately. Postpartum depression is a crippling mood disorder, historically neglected in healthcare, leaving mothers to suffer in fear, confusion, and silence [26
]. Undiagnosed, it can adversely affect the mother-infant relationship and lead to long-term emotional problems for the child [26
]. Studies indicate that women with pre-existing diabetes experience greater anxiety and depressive moods [21
], are more distressed [43
] and report lower mental health [9
] compared to pregnant women without diabetes. They also report more intense pregnancy-related negative feelings and fewer positive emotions than pregnant women without diabetes. In the first large-scale data collection using the newly developed postnatal questionnaire, we will also include the Postpartum Depression Predictors Inventory–Revised questionnaire (PDPI-R) [27
]. Our intention will be to identify women with or at risk of postpartum depression and, as a secondary objective, to determine whether the newly developed questionnaires are capable of detecting those most at risk.
This study also identified that appropriate and timely information throughout the transition to motherhood was lacking and that the internet and web-based information/support plays an important role for women with T1DM during time. According to Sparud-Lundin et al. [15
], a high proportion of women with T1DM seek diabetes-related information on the internet, especially before, during, and after pregnancy. In an Australian study, Rasmussen et al. [5
] found that websites and e-mails had a positive impact on the self-perceptions, self-confidence and diabetes management of young women with T1DM by making it easier to access information. In addition, it reduced their sense of isolation and informed them about different approaches to health services [5
]. Sparud-Lundin et al’s [15
] study highlighted the importance of further developing effective web-based support that contains reliable information, interactive support and enables social networking for this population.
The sample size was small and the educational level of participants was high, with 70% tertiary educated. However, the combination of the previous qualitative data, expert reviews and cognitive debriefing interviews justify that the items and depth of data were acceptable for the aim of the study. The cognitive debriefing form focussed the interviews on the depth and breadth of each theme, also enabling participants to indicate where new items were needed or existing items needed to be modified. The youngest participant was 27 years of age, which might be a limitation in that younger women’s experiences, psychosocial needs and coping mechanisms may differ from those of older women. However, the women at the age of 27 years and above were able to compare more life transitions and, therefore, be more specific about their needs during their transition to the motherhood.