Paula Kelly

Underlying barriers to referral to paediatric palliative care services Knowledge and attitudes of health care professionals in a paediatric tertiary care centre in the United Kingdom

Referrals to children’s palliative care services typically occur late in the illness trajectory, with many children who would benefit not referred at all. Previous studies report health care professionals’ (HCPs) assessment of various parent-related factors as barriers to referral. We conducted a cross-sectional survey of HCPs working in a paediatric tertiary care hospital in the United Kingdom, with an established paediatric palliative care team, to explore staff perceptions of barriers, knowledge and attitudes, with the aim of developing interventions to increase patient access to palliative care services. Survey respondents evidenced good knowledge of the principles of palliative care in closed questions, but their attitudes expressed in open-text questions and reported reasons to refer to a palliative care service demonstrated an association of palliative care with death and dying. We suggest that the association of palliative care with end of life may be a modifiable factor relevant to late and non-referral and deserving of further investigation and attention in education and training.

Withdrawal of ventilatory support outside the intensive care unit: guidance for practice

Objective To review the work of one tertiary paediatric palliative care service in facilitating planned withdrawal of ventilatory support outside the intensive care setting, with the purpose of developing local guidance for practice. Methods Retrospective 10-year (2003–2012) case note review of intensive care patients whose parents elected to withdraw ventilation in another setting. Demographic and clinical data revealed common themes and specific incidents relevant to local guideline development. Results 18 children (aged 2 weeks to 16 years) were considered. Three died prior to transfer. Transfer locations included home (5), hospice (8) and other (2). Primary pathologies included malignant, neurological, renal and respiratory diseases. Collaborative working was evidenced in the review including multidisciplinary team meetings with the palliative care team prior to discharge. Planning included development of symptom management plans and emergency care plans in the event of longer than anticipated survival. Transfer of children and management of extubations demonstrated the benefits of planning and recognition that unexpected events occur despite detailed planning. We identified the need for local written guidance supporting healthcare professionals planning and undertaking extubation outside the intensive care setting, addressing the following phases: (i) introduction of withdrawal, (ii) preparation pretransfer, (iii) extubation, (iv) care postextubation and (v) care postdeath. Conclusions Planned withdrawal of ventilatory support outside the intensive care setting is challenging and resource intensive. The development of local collaborations and guidance can enable parents of children dependent on intensive care to consider a preferred place of death for their child, which may be outside the intensive care unit.

Keeping all options open: Parents’ approaches to advance care planning

Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life‐limiting condition (LLC). However, most families have little knowledge or experience of ACP.

Experiences of healthcare professionals in the community dealing with the spiritual needs of children and young people with life-threatening and life-limiting conditions and their families: report of a workshop

Objective We sought to understand how healthcare professionals (HCP) conceptualise spirituality among seriously ill children and young people (CYP) and their families, and their experiences in dealing with spiritual issues that emerge in practice. Method We analysed thematically presentations and small group discussions with HCP that took place as part of a day-long workshop exploring the place of spirituality in paediatric healthcare. Results (1) HCP conceptualised spirituality as highly individualised searches for meaning, hope and connectedness to self, others and the world. They saw spirituality within a developmental context. (2) HCP described spiritual concerns that were tied to their own conceptualisations of spirituality, centring on ideas of loss, including loss of hope or meaning. (3) HCP approached spiritual concerns of CYP and families by ‘being there’ and supporting spiritual enquiry. (4) Challenges to their work included managing hopes of CYP and families in the face of poor prognoses, discussions about miracles and issues with their own faith. Spiritual care was seen as different to other areas of care which HCP felt had a greater prescription in delivery. Conclusions The findings underscore the complexity of spirituality in times of illness and the challenges faced in its management. HCP should be alerted to the myriad ways spirituality emerges in serious illness and opportunities for developing confidence in attending to spiritual issues with CYP and families through training. Research should explore with patients, families and HCP how tensions among CYP, autonomy, the maintenance of hope and miracle beliefs are best approached within care.

Palliative care education in neonatal units: impact on knowledge and attitudes

Objective To facilitate improved and earlier access to palliative care for babies, a 4-h workshop on the principles, practice and resources in palliative care was delivered in 21 neonatal units across London. This paper assesses the impact of these workshops. Design As part of mixed methods, processual evaluation of a series of education workshops, a pre and post survey instrument was developed, consisting of open and closed questions assessing knowledge of services and attitudes towards palliative care. Before and after each workshop attendees were invited to complete the survey. Setting Neonatal units in hospitals across London, including examples of intensive care, high dependency and special care units. Results 331 healthcare professionals attended the sessions, and 264 (80%) completed questionnaires. The majority of attendees were experienced neonatal nurses working in neonatal intensive care (61% more than 7 years) but with limited experience of palliative care services. Over 79% of respondents reported that the workshop completely met their learning needs. Post-session 80% of respondents felt confident referring to palliative care services, compared with 46% before (p<0.001). Analysis of open and closed text responses revealed a shift in attitude after the sessions from a focus on dying/end-of-life, towards integrating palliative care as part of a holistic treatment plan. Conclusions A short (half day), locally delivered workshop can change attitudes and increase knowledge in neonatal staff. Such a workshop can serve as a first step in facilitating access to and utilisation of a variety of palliative care services.

Building the evidence for nursing practice: learning from a structured review of SIOP abstracts, 2003-2012

The focus of work submitted to an international conference can reflect the changing landscape of a specialty and prove important for identifying trends, uncovering gaps, and providing new directions for nurse‐led research and clinical practice. We present an analysis of trends in presentations in the nursing program at the SIOP congress from 2003 to 2012 based on all accepted abstracts.

RECRUITING PARENTS TO PAEDIATRIC PALLIATIVE CARE RESEARCH: IMPACT OF LOW INVITATION RATES ON SAMPLE BIAS

Introduction Recruitment in paediatric palliative care is widely reported as challenging, with low rates of invitation by clinicians. The impact of this on sample bias is unknown. Aim(s) and method(s) We studied recruitment to a qualitative interview study about parental decision making for children cared for by a specialist palliative care (PC) team. PC clinicians were encouraged to introduce the study to parents over 12 months. With ethical approval, we used information from the PC team database and feedback from clinicians to explore the impact of low invitation rates on sample bias. Results The families of 519 living and 73 deceased patients were retrospectively identified as potentially eligible for recruitment. Clinicians invited parents of 28 (5.4%) living patients compared to 21 (28.8%) deceased patients (p=0.0001). On multivariable analyses, there was no association between patient demographics and invitation, but for living patients, total and out-of-hours contact time between family and PC team while eligible were independently associated with invitation (p<0.05). The most common reasons clinicians gave for not inviting parents of living and deceased patients were little or no contact with them and perceived burden. Conclusion(s) Invitation rates were especially low among parents of living patients. There was no evidence that this led to major demographic bias. However, the strong influence of family contact may have introduced bias potentially relevant to the project (e.g. patient stability and parent-clinician relationships) that we were unable to measure. We recommend that researchers consider levels of patient contact when planning studies requiring recruitment via clinicians.