Facilitators & barriers of palliative care in the neonatal unit

fence-1838771_960_720

Kilcullen, M. & Ireland, S. Palliative care in the neonatal unit: neonatal nursing staff perceptions of facilitators and barriers in a regional tertiary nursery. BMC Palliative Care | Published online: 11 May 2017

Background: Neonatology has made significant advances in the last 30 years. Despite the advances in treatments, not all neonates survive and a palliative care model is required within the neonatal context. Previous research has focused on the barriers of palliative care provision. A holistic approach to enhancing palliative care provision should include identifying both facilitators and barriers. A strengths-based approach would allow barriers to be addressed while also enhancing facilitators. The current study qualitatively explored perceptions of neonatal nurses about facilitators and barriers to delivery of palliative care and also the impact of the regional location of the unit.

Conclusions: This study identified and explored facilitators and barriers in the delivery of quality palliative care for neonates in a regional tertiary setting. Themes identified suggested that a strengths-approach, which engages and amplifies facilitating factors while identified barriers are addressed or minimized, would be successful in supporting quality palliative care provision in the neonatal care setting. Study findings will be used to inform clinical education and practice.

Read the full article here

Decision making for children with life-limiting conditions and life-threatening illnesses

Bluebond-Langner, M. et al. (2017) Archives of Disease in Childhood. 102(5) pp. 468-471

doors-1767563_960_720

The relationship between parents and clinician is critical to the care and treatment of children with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs). This relationship is built and maintained largely in consultations. In this article we lay out factors that bear on the success of clinical consultations and the maintenance of the essential clinician–parent relationship at progression or deterioration of LLCs or LTIs.

We suggest an approach to engaging parents in conversations about care and treatment that recognises and appreciates the dilemmas which clinicians and parents face and in so doing provides a way for everyone to live with the decisions that are made. A close analysis of a consultation at progression and excerpts of encounters among parents, clinician and researcher are used to illustrate our approach to research, analysis and development of recommendations for clinical practice.

Read the full article here

The experience of providing end of life care at a children’s hospice

McConnell, T. & Porter, S. BMC Palliative Care. Published online: 13 February 2017

communication-1991851_960_720.png

Background: More attention is being paid to the wellbeing of staff working in stressful situations. However, little is known about staff experience of providing end-of-life care to children within a hospice setting. This study aims to explore the experiences of care team staff who provide end-of-life care within a children’s hospice.

Conclusions: Service and policy initiatives should encourage open, informal peer/organisational support among the wider children’s palliative care sector. Further research should focus on paediatric palliative care education, particularly in relation to symptom management and communication at end-of-life, harnessing the expertise and breadth of knowledge that could be shared between children’s hospices and hospital settings.

Read the full article here

End of life care for infants, children and young people

NICE has published new NICE guidance: End of life care for infants, children and young people with life-limiting conditions: planning and management (NG61).

This guideline covers the planning and management of end of life and palliative care in for infants, children and young people (aged 0–17 years) with life-limiting conditions. It aims to involve children, young people and their families in decisions about their care, and improve the support that is available to them throughout their lives.

Additional link: NICE news report

I am Whole: A report investigating the stigma faced by young people experiencing mental health difficulties

YMCA | Published online: October 2016

i-am-whole

Image source: YMCA

The purpose of this research was to examine the stigma faced by young people experiencing mental health difficulties.

Growing up can be a positive time for many. However, there are hundreds of thousands of young people across England and Wales for whom the experience is very different. Mental health difficulties among children and young people are common and can be both persistent and damaging.

However, the challenges that young people face are not limited to the symptoms mental health difficulties; many must also take on the day-to-day stigma that too often goes with this.

By giving young people the platform to share their views and stories, I AM WHOLE seeks to go beyond the headline statistic ‘one in 10 young people experience mental health difficulties’ that so often dominates the discourse.

Instead, this research seeks to get under the surface and understand the real experiences of those with mental health difficulties. This is done by examining the prevalence of this stigma, who is experiencing it and how they are doing so, the impact of this stigma, and the potential solutions that the young people themselves have identified.

Read the summary here

Read the full report here

Parents’ experience of a follow-up meeting after a child’s death in the Paediatric Intensive Care Unit

Brink, H.L. et al. Intensive and Critical Care Nursing. Published online: 12 August 2016

Objective: ‘To identify parents’ experience of a follow up meeting and to explore whether the conversation was adequate to meet the needs of parents for a follow-up after their child’s death in the Paediatric Intensive Care Unit (PICU).

Design and setting: Qualitative method utilising semi-structured interviews with six pairs of parents 2–12 weeks after the follow-up conversation. The interviews were held in the parents’ homes at their request. Data were analysed using a qualitative, descriptive approach and thematic analysis.

Findings: Four main themes emerged: (i) the way back to the PICU; (ii) framework; (iii) relations and (iv) closure.

Conclusion: The parents expressed nervousness before the meeting, but were all pleased to have participated in these follow-up meetings. The parents found it meaningful that the follow-up meeting was interdisciplinary, since the parents could have answers to their questions both about treatment and care. It was important that the staff involved in the follow-up meeting were those who had been present through the hospitalisation and at the time of the child’s death. Parents experienced the follow-up meeting as being a closure of the course in the PICU, regardless the length of the hospitalisation.

Read the abstract here