An Exploration of Parents’ Experiences and Empowerment in the Care for Preterm Born Children

Background The purpose of this article is to describe and evaluate the methodology of online focus group discussions within the setting of paediatric oncology. Methods Qualitative study consisting of separate moderated asynchronous online discussion groups with 7 paediatric cancer patients (aged 8–17), 11 parents, and 18 survivors of childhood cancer (aged 8–17 at diagnosis). Results All three participant groups could be actively engaged over a one-week period. Respondents highly valued the flexibility and convenience of logging in at their own time and place to join the discussion. Adolescent patients and survivors emphasized that the anonymity experienced made them feel comfortable to express their views in detail. The findings indicate a strong preference for online group discussions across all participant groups. Conclusion The findings show that online focus group methodology is a feasible tool for collecting qualitative data within the setting of paediatric oncology, and may offer new opportunities to collect data in other hard-to-include populations. The evaluations seem to indicate that the online group discussions have given participants an opportunity to articulate their experiences and views in a way they might not have done in a traditional group discussion.

A systematic review of the literature was conducted to answer the following 2 questions: (a) What are the needs of parents who have infants in the neonatal intensive care unit? (b) What behaviors support parents with an infant in the neonatal intensive care unit? Using the search terms "parents or parenting" and the "neonatal intensive care unit," computer library databases including Medline and CINAHL were searched for qualitative and quantitative studies. Only research published in English between 1998 and 2008 was included in the review. Based on the inclusion criteria, 60 studies were selected. Study contents were analyzed with the 2 research questions in mind. Existing research was organized into 1 of 3 tables based on the question answered. Nineteen articles addressed the first question, 24 addressed the second, and 17 addressed both. Six needs were identified for parents who had an infant in the neonatal intensive care unit: (a) accurate information and inclusion in the infant's care, (b) vigilant watching-over and protecting the infant, (c) contact with the infant, (d) being positively perceived by the nursery staff, (e) individualized care, and (f) a therapeutic relationship with the nursing staff. Four nursing behaviors were identified to assist parents in meeting these needs: (a) emotional support, (b) parent empowerment, (c) a welcoming environment with supportive unit policies, and (d) parent education with an opportunity to practice new skills through guided participation.

Effective information provision is a prerequisite for partnership between child patients, their parents and health professionals. To explore the complexity of parents' information needs and how current information provision is evaluated. Qualitative methodology using semi-structured interviews with 27 parents of 20 families with a chronically ill child, recruited at the paediatric department of a British district general hospital. The need for information varied greatly between individuals and over time, and commonly involved diagnosis, management plan and prognosis. However, most parents in this study experienced professional communication and information provision to be inadequate. Information provision appeared to be related to the diagnosis, the level of secondary care involvement and the extent to which parents were required to take responsibility for daily management of the child's condition. Parents' complex and shifting evaluations and responses point to the double-edged nature of information. Some parents actively sought out information, but resisting information, for fear of its potentially negative impact, was also noted to be a coping strategy. Parents of chronically ill children presented with a great variety of information needs, which was not always appreciated by healthcare professionals. This study highlights the need for good communication based on professional awareness of how parents understand and experience their child's illness, as well as the importance of sensitively individualising information provision to parents' needs so as to address their requirements but not to unnecessarily increase their anxiety or insecurity.