Developing a tool to support communication of parental concerns when a child is in hospital

The involvement of parents in their child’s hospital care has been strongly advocated in paediatric healthcare policy and practice. However, incorporating parental worries about their child’s condition into clinical care can be difficult for both parents and healthcare professionals. Through our “Listening To You” quality improvement project we developed and piloted an innovative approach to listening, incorporating and responding to parental concerns regarding their child’s condition when in hospital. Here we describe the phases of work undertaken to develop our “Listening To You” communications bundle, including a survey, literature review and consultation with parents and staff, before findings from the project evaluation are presented and discussed.

Disabling a family? Emotional dilemmas experienced in becoming a parent of a child with learning disabilities

Becoming the parent of a child diagnosed with learning disabilities can have a dramatic impact. Chrissie Rogers, the author of this article, is both a lecturer in education studies at Keele University and the mother of a daughter who has learning disabilities. She argues here that the pressures on mothers to produce ‘perfect’ babies and to meet all their needs are immense. These pressures arise from both internalised norms and societal expectations and, in the face of these pressures, parents may feel shock, loss and disappointment. These feelings may lead, in turn, to denial, anxiety and conflict affecting both the parents and the professionals involved with the family. Drawing on a series of in-depth interviews and personal narratives, Chrissie Rogers makes a powerful case for the importance of support, whether that support is formal or informal. She suggests that, without the right levels of support and understanding, having a child with a diagnosis of learning disability can disable the whole family.

Parenting a child with chronic illness as they transition into adulthood:a systematic review and thematic synthesis of parents’ experiences

Objective - To understand how parents view and experience their role as their child with a long-term physical health condition transitions to adulthood and adult healthcare services. Methods - Five databases were systematically searched for qualitative articles examining parents’ views and experiences of their child’s healthcare transition. Papers were quality assessed and thematically synthesised. Results - Thirty-two papers from six countries, spanning a 17-year period were included. Long-term conditions were diverse. Findings indicated that parents view their child’s progression toward self-care as an incremental process which they seek to facilitate through up-skilling them in self-management practices. Parental perceptions of their child’s readiness, wellness, competence and long-term condition impacted on the child’ progression to healthcare autonomy. A lack of transitional healthcare and differences between paediatric and adult services served as barriers to effective transition. Parents were required to adjust their role, responsibilities and behaviour to support their child’s growing independence. Conclusion - Parents can be key facilitators of their child’s healthcare transition, supporting them to become experts in their own condition and care. To do so, they require clarification on their role and support from service providers. Practice Implications - Interventions are needed which address the transitional care needs of parents as well as young people.

Interventions for nurses caring for a child who has an unexpected acute life threatening event (ALTE) in hospital

Introduction: Caring for a child who has an unexpected ALTE in hospital can be stressful. An ALTE may include a cardiac arrest, respiratory arrest or call for immediate assistance. An international survey of practice was conducted to identify any existing interventions to inform a PhD program of work aimed at reducing the stress from these events through preparation and support. Purpose: The purpose of the survey was threefold: (1) Describe ‘normal’ practice when it comes to preparing staff or providing psychological support after caring for a child who has had an ALTE. (2) Determine if there are any interventions to prepare clinical staff for potential psychological effects of caring for a child who has an ALTE. (3) Determine if there are any interventions to provide support for clinical staff after caring for a child who has an ALTE. Material - Methods: An 18 item semi structured questionnaire was designed for the study to allow respondent to describe practices within their institution and outline their opinions and professional experiences. Clinicians from selected children’s and adult hospitals in Australia, Canada, New Zealand, United Kingdom and the United States of America were contacted by telephone. Following consent they were given the option to complete the survey via the telephone, by post or online. Results: Of the 61 hospitals approached 44 (72%) clinicians responded. Eighteen (41%) respondents identified interventions in place to prepare nurses for an ALTE ranging from (but not limited to) ad hoc discussions during life support training through to structured simulation training. Thirty-six (82%) respondents identified that they had interventions in place to support nurses after an ALTE ranging from (but not limited to) debriefing through to structured case reviews. Conclusions: Interventions varied across institutions, with no outcome or evaluation data for the interventions published to date.