Family‐centred care in the paediatric intensive care unit: an integrative review of the literature

Butler, Ashleigh E.; Copnell, Beverley; Willetts, Georgina

doi:10.1111/jocn.12498

Cited by 59 publications

(67 citation statements)

References 29 publications

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“…The guidelines recommend that family‐centred care should be respectful and responsive to each family's needs and values through which a positive, supportive relationship between family members and clinicians can develop. However, evidence suggests that this does not always occur …”

Section: Introductionmentioning

confidence: 99%

Supporting Muslim families before and after a death in neonatal and paediatric intensive care units

Mutair

Ammary

Brooks

et al. 2019

Nursing in Critical Care

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Background: The death of a child is regarded as one of the most devastating events for a family. Families are reliant on nurses to not only provide end-of-life care but also to support and care for grieving families in a way that is sensitive to their cultural and religious needs and preferences.Aims: The aim of this study was to explore the perceived impact and influence of cultural diversity on how neonatal and paediatric intensive care nurses care for Muslim families before and after the death of infants/children.Design: A qualitative descriptive approach was used in this study, conducted in Saudi Arabia.Methods: Semi-structured interviews were used to gather data from a convenience sample of registered nurses working in neonatal and paediatric intensive care, with experience in providing end-of-life care. Interviews were conducted between July and November, 2018. Interviews were audio-recorded and transcribed for analysis. Results: Thirteen registered nurses participated; all were born overseas, identified with various faiths and spoke English in the workplace. A respect for diversity and care of the family was prioritized yet impacted by communication challenges. Caring and respect was demonstrated by facilitating important cultural and religious practices important in the Muslim faith. Self-care was identified as important, transcending the culturally diverse nature of the nursing workforce.Conclusions: Significant challenges exist for a culturally diverse nursing workforce in providing care to a Saudi Muslim population of infants/children and families, before and after a death. Their overriding commitment to respect for others, and an openness to cultural diversity and difference, aided in overcoming the inherent challenges in providing culturally sensitive end-of-life care that meets the needs of Muslim families. These findings provide valuable insights for intensive care clinicians in other countries to address challenges associated with cultural diversity. K E Y W O R D S bereavement, cultural diversity and family needs in intensive care unit, end-of-life care, neonatal intensive care, paediatric intensive care

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Section: Introductionmentioning

confidence: 99%

Supporting Muslim families before and after a death in neonatal and paediatric intensive care units

Mutair

Ammary

Brooks

et al. 2019

Nursing in Critical Care

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“…Therefore, the findings from this article – discussed below – are directly relevant to nursing education and clinical practice in contemporary society (Butler et al . , Tallon et al . ).…”

Section: Introductionmentioning

confidence: 99%

They know it's safe – they know what to expect from that face: perceptions towards a cognitive‐behavioural counselling programme among caregivers of children with cystic fibrosis

Moola

Henry

Huynh

et al. 2017

Journal of Clinical Nursing

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“…Staff perceived some LSPs as an obstacle in developing professionally; caring for them on a long-term basis was, in some cases, regarded as 'unfair' and in extreme cases led to deskilling. Although FCC views the family as equal contributors to care, it is evident that there may be problems in its implementation (11)(12). In this study, some staff enjoyed being able to care for long term families, getting to know them and responding to their needs.…”

Section: Figurementioning

confidence: 88%

“…Recent research has highlighted a number of challenges to implementation (11,12). A review of FCC in the PICU suggested that at the present time there is little evidence of improvement over the last 20 years which the author suggests could be due to insufficient time for the guideline to have a measurable impact (12).…”

Section: Introductionmentioning

confidence: 99%

The Challenges of Caring for Long-Stay Patients in the PICU*

Geoghegan

Oulton

Bull

et al. 2016

Pediatric Critical Care Medicine

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Objective: Compared to shorter-stay patients, caring for long-stay patients in the ICU entails a disproportionate burden for staff. Our objective was to gain a deeper understanding of the impact on staff of caring for children who have a prolonged stay on the PICU. Design: Qualitative study based on semi-structured interviews. Data were analyzed using the Framework approach. Setting: Children’s tertiary hospital. Participants: Seventeen members of staff (7 psychosocial staff, 7 nurses, 3 consultants) working in the PICU, neonatal ICU, or cardiac ICU (PICU will be used to encompass neonatal ICU, cardiac ICU, and PICU for the remainder of this article). Interventions: Semi-structured, tape-recorded interviews. Measurements and Main Results: Staff reported both positive and challenging aspects of caring for long-stay patients in the PICU. Five key areas relating to the challenges of caring for long-stay patients were identified: staff expectations about their work, characteristics of the patient group, the impact on staff, the impact on the wider unit, and the availability of support. Staff views were often compounded by individual cases they had been involved with or had heard about which fell at either end of the spectrum of “good” and “bad”. Conclusions: Whilst there are reported benefits associated with caring for long-stay patients, there are a number of challenges reported that may have implications for staff and the wider unit. When caring for a particular sub-group of long-stay patients, staff may be more likely to experience negative impacts. A key priority for the PICU is to ensure that support mechanisms are timely, accessible, and allow staff to explore their own reactions to their work.

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Family‐centred care in the paediatric intensive care unit: an integrative review of the literature

Abstract: This review outlines the extant research to enhance awareness of the unique state of family-centred care in paediatric intensive care and makes recommendations for future research.

Cited by 59 publications

References 29 publications

Supporting Muslim families before and after a death in neonatal and paediatric intensive care units

Supporting Muslim families before and after a death in neonatal and paediatric intensive care units

They know it's safe – they know what to expect from that face: perceptions towards a cognitive‐behavioural counselling programme among caregivers of children with cystic fibrosis

The Challenges of Caring for Long-Stay Patients in the PICU*

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