Mothers’ perceptions of family centred care in neonatal intensive care units

Objective To explore mothers’ perceptions of family centred care (FCC) in neonatal intensive care units (NICUs) in England. Design The qualitative experiences of 12 mothers from three NICUs in the UK were elicited using individual interviews. A thematic network analysis was conducted on the transcribed interviews Main outcome measures A central global theme supported by a number of organizing themes were developed reflecting the views of the mothers and their experiences of FCC. Results A global theme of “Finding My Place” was identified, supported by six organizing themes: Mothering in Limbo; Deference to the Experts; Anxious Surveillance; Muted Relations, Power Struggles and Consistently Inconsistent. Mothers experienced a state of liminality and were acutely sensitive to power struggles, awkward relationships and inconsistencies in care. To try to maintain their equilibrium and protect their baby they formed deferential relationships with health professionals and remained in a state of anxious surveillance. Conclusions This study illustrates that despite the rhetoric around the practice of FCC in NICUs, there was little in the mother's narratives to support this. It is of the utmost importance to minimize the consequences of the liminal experience, to improve staff–mother interactions and to facilitate mothers’ opportunities to be primary caregivers

Development and validation of the needs of children questionnaire: An instrument to measure children\u27s self-reported needs in hospital

AIM: To develop and psychometrically test the needs of children questionnaire (NCQ), a new instrument to measure school-aged children\u27s self-reported psychosocial physical and emotional needs in paediatric wards. DESIGN: This is an instrument development study based on recommendations for developing a reliable and valid questionnaire. METHOD: The NCQ was developed over three phases between February 2013-April 2017 and included item generation; content adequacy assessment; questionnaire administration; factor analysis; internal consistency assessment and construct validity. Psychometric properties were assessed after 193 school-aged children completed the needs of children\u27s questionnaire in four paediatric areas in Australia and New Zealand. RESULTS: The development and validation of the NCQ over two countries resulted in a 16-item, four-category tool to measure the self-reported importance and fulfilment of school-aged children\u27s needs in hospital. Cronbach\u27s alpha for the combined samples was 0.93. CONCLUSION: The NCQ bridges a gap to measure the level of importance and fulfilment of school-aged children\u27s self-reported needs in hospital. Future testing and validation is needed in other paediatric areas and countries. IMPACT: The 16-item NCQ is a valid measure to evaluate if the quality of care delivered and received in hospital is in line with what children self-report as important and required and to date indicates good usability and utility. Child self-reports are essential to inform healthcare delivery, policy, research and theory development from a child and family-centred care lens that honours the United Nations Convention on the Rights of the Child and the best interests of the child

Measuring organisational readiness for patient engagement (MORE) : an international online Delphi consensus study

Date of Acceptance: 28/01/2015. © 2015 Oostendorp et al.; licensee BioMed Central. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise statedWidespread implementation of patient engagement by organisations and clinical teams is not a reality yet. The aim of this study is to develop a measure of organisational readiness for patient engagement designed to monitor and facilitate a healthcare organisation’s willingness and ability to effectively implement patient engagement in healthcarePeer reviewedFinal Published versio

Supporting families in the context of adult traumatic brain injury

Families are fundamental to the wellbeing, quality of life and functional and social outcomes of individuals who sustain traumatic brain injury (TBI). However, the family is often vulnerable and at risk from the challenge of supporting an individual who has been left with long-term neurological disability. Considering the young population often affected, the resulting conditions can have significant emotional and financial burden for families and service providing for their long-term needs. The National Service Framework for Long-term Conditions acknowledges that the whole family is affected by neurological disability and it suggests that a 'whole-family' approach to managing TBI may be useful. This paper will argue that both family systems theory and family-centred care are frameworks that may be helpful in achieving the 'whole-family' approach in practice. However, future research is needed that will assess the efficacy of these and other approaches so that health-care services know the true value of any such intervention.N/

A systematic review of instruments for assessing parent satisfaction with family-centred care in neonatal intensive care units

This systematic review synthesised and described instruments measuring parent satisfaction with the increasing standard practice of family-centred care (FCC) in neonatal intensive care units. We evaluated 11 studies published from January 2006 to March 2016: two studies validated a parent satisfaction questionnaire, and nine developed or modified previous questionnaires to use as outcome measures in their local settings. Most instruments were not tested on reliability and validity. Conclusion: Only two validated instruments included all six of the FCC principles and could assess parent satisfaction with FCC in neonatal intensive care units and be considered as outcome indicators for further research

Neonatal intensive care parent satisfaction: a multicenter study translating and validating the Italian EMPATHIC-N questionnaire

Background: In Neonatal Intensive Care Units (NICUs), parent satisfaction and their experiences are fundamental to assess clinical practice and improve the quality of care delivered to infants and parents. Recently, a specific instrument, the EMpowerment of PArents in THe Intensive Care-Neonatology (EMPATHIC-N), has been developed in the Netherlands. This instrument investigated different domains of care in NICUs from a family-centered care perspective. In Italy, no rigorous instruments are available to evaluate parent satisfaction and experiences in NICU with family-centered care. The aim of this study was to translate and validate the EMPATHIC-N instrument into Italian language measuring parent satisfaction. Methods: A psychometric study was conducted in nine Italian NICUs. The hospitals were allocated across Italy: four in the North, four in Central region, one in the South. Parents whose infants were discharged from the Units were enrolled. Parents whose infants died were excluded. Results: Back-forward translation was conducted. Twelve parents reviewed the instrument to assess the cultural adaptation; none of the items fell below the cut-off of 80% agreement. A total of 186 parents of infants who were discharged from nine NICUs were invited to participate and 162 parents responded and returned the questionnaire (87%). The mean scores of the individual items varied between 4.3 and 5.9. Confirmatory factor analysis was performed and all factor loadings were statistically significant with the exception of item ‘Our cultural background was taken into account’. The items related to overall satisfaction showed a higher trend with mean values of 5.8 and 5.9. The Cronbach’s alpha’s (at domain level 0.73-0.92) and corrected item-total scale correlations revealed high reliability estimates. Conclusions: The Italian EMPATHIC-N showed to be a valid and reliable instrument measuring parent satisfaction in NICUs from a family-centered care perspective. Indeed, it had good psychometric properties, validity, and reliability. Furthermore, this instrument is fundamental for further research and internationally benchmarking

Recommendations for Enhancing Psychosocial Support of NICU Parents through Staff Education and Support

Providing psychosocial support to parents whose infants are hospitalized in the neonatal intensive care unit (NICU) can improve parents’ functioning as well as their relationships with their babies. Yet, few NICUs offer staff education that teaches optimal methods of communication with parents in distress. Limited staff education in how to best provide psychosocial support to families is one factor that may render those who work in the NICU at risk for burnout, compassion fatigue and secondary traumatic stress syndrome. Staff who develop burnout may have further reduced ability to provide effective support to parents and babies. Recommendations for providing NICU staff with education and support are discussed. The goal is to deliver care that exemplifies the belief that providing psychosocial care and support to the family is equal in importance to providing medical care and developmental support to the baby