Participatory Design of a Medication Module in an Electronic Medical Record for Paediatric Palliative Care: A Think-Aloud Approach with Nurses and Physicians

Background: Electronic medical records (EMRs) play a key role in improving documentation and quality of care in paediatric palliative care (PPC). Inadequate EMR design can cause incorrect prescription and administration of medications. Due to the fact of complex diseases and the resulting high level of medical complexity, patients in PPC are vulnerable to medication errors. Consequently, involving users in the development process is important. Therefore, the aim of this study was to evaluate the acceptance of a medication module from the perspective of potential users in PPC and to involve them in the development process. Methods: A qualitative observational study was conducted with 10 nurses and four physicians using a concurrent think-aloud protocol and semi-structured qualitative interviews. A qualitative content analysis was applied based on a unified theory of acceptance and use of technology. Results: Requirements from the user’s perspective could be identified as possible influences on acceptance and actual use. Requirements were grouped into the categories “performance expectancies” and “effort expectancies”. Conclusions: The results serve as a basis for further development. Attention should be given to the reduction of display fragmentation, as it decreases cognitive load. Further approaches to evaluation should be taken.

Designing the physical environment for inpatient palliative care: a narrative review

BackgroundIt is essential that the physical environments in which inpatient palliative care is provided support the needs of patients and the facilitate the multidimensional delivery of palliative care. This review aims to identify the features and characteristics of inpatient palliative care environments that enhance or detract from the patient experience; and identify opportunities for progress within this field.MethodThree databases were searched: MEDLINE (1946–2020), PsycINFO (1806–2020) and CINAHL (1937–2020). Articles were screened by title and abstract with included studies read in full for data extraction. Data synthesis involved thematic analysis informed by the findings of the included literature. Inclusion criteria were studies with empirical methodology examining adult palliative care in the hospital, hospice or nursing home environment. Studies that examined palliative care delivered within the emergency department, ICU or within the home were excluded, as were those related to paediatric palliative care.ResultsFour main themes were identified: the provision of privacy, facilitating interactions with family, facilitating comfort through homeliness and connections to nature.ConclusionsThe board acceptance of single rooms as the preeminent design solution for supporting privacy, dignity and family interaction, alongside current conceptions of homeliness that typically focus on matters of interior design, are limiting possibilities for further design innovation within palliative care settings. Research that investigates a broader set of design strategies through which the built environment can support care, alongside enhanced interdisciplinary collaboration, could positively contribute to patient and family experiences of inpatient palliative care.

Pain assessment tools in paediatric palliative care: A systematic review of psychometric properties and recommendations for clinical practice

Background: Assessing pain in infants, children and young people with life-limiting conditions remains a challenge due to diverse patient conditions, types of pain and often a reduced ability or inability of patients to communicate verbally. Aim: To systematically identify pain assessment tools that are currently used in paediatric palliative care and examine their psychometric properties and feasibility and make recommendations for clinical practice. Design: A systematic literature review and evaluation of psychometric properties of pain assessment tools of original peer-reviewed research published from inception of data sources to April 2021. Data sources: PsycINFO via ProQuest, Web of Science Core, Medline via Ovid, EMBASE, BIOSIS and CINAHL were searched from inception to April 2021. Hand searches of reference lists of included studies and relevant reviews were performed. Results: From 1168 articles identified, 201 papers were selected for full-text assessment. Thirty-four articles met the eligibility criteria and we examined the psychometric properties of 22 pain assessment tools. Overall, the Faces Pain Scale-Revised (FPS-R) had high cross-cultural validity, construct validity (hypothesis testing) and responsiveness; while the Faces, Legs, Activity, Cry and Consolability (FLACC) scale and Paediatric Pain Profile (PPP) had high internal consistency, criterion validity, reliability and responsiveness. The number of studies per psychometric property of each pain assessment tool was limited and the methodological quality of included studies was low. Conclusion: Balancing aspects of feasibility and psychometric properties, the FPS-R is recommended for self-assessment, and the FLACC scale/FLACC Revised and PPP are the recommended observational tools in their respective age groups.

Decision-making in paediatric palliative care interpreting

The interpreting profession has long used metaphors or rule statements to describe and teach the ways in which practitioners make decisions (Dean & Pollard, 2011, 2018). Interpreting students are also often taught that the context of an encounter will dictate their decision-making by way of statements such as “it depends”. Such pedagogical statements can make talk between a practitioner and a medical professional about the responsibilities of an interpreter during medical encounters difficult. This study is based on the work of Dean and Pollard (2011, 2018) on value-based decision-making and is guided by the four principles of biomedical ethics (respect for autonomy, non-maleficence, beneficence and justice). It has sought to provide evidence of the existence, applicability and usability of these frameworks through a single case study of a real-life appointment in which a parent of a palliative care outpatient and a medical professional communicated during a consultation, aided by a medical interpreter.

Oral morphine versus transmucosal diamorphine for breakthrough pain in children: methods and outcomes: UK (DIPPER study) consensus

ObjectivesNo randomised controlled trials have been conducted for breakthrough pain in paediatric palliative care and there are currently no standardised outcome measures. The DIPPER study aims to establish the feasibility of conducting a prospective randomised controlled trial comparing oral and transmucosal administration of opioids for breakthrough pain. The aim of the current study was to achieve consensus on design aspects for a small-scale prospective study to inform a future randomised controlled trial of oral morphine, the current first-line treatment, versus transmucosal diamorphine.MethodsThe nominal group technique was used to achieve consensus on best practice for mode of administration, dose regimen and a range of suitable pain intensity outcome measures for transmucosal diamorphine in children and young people with breakthrough pain. An expert panel of ten clinicians in paediatric palliative care and three parent representatives participated. Consensus was achieved when agreement was reached and no further comments from participants were forthcoming.ResultsThe panel favoured the buccal route of administration, with dosing according to the recommendations in the Association for Paediatric Palliative Medicine formulary (fifth Edition, 2020). The verbal Numerical Rating Scale was selected to measure pain in children 8 years old and older, the Faces Pain Scale-Revised for children between 4 and 8 years old, and Face, Legs, Activity, Cry and Consolability (FLACC)/FLACC-Revised as the observational tools.ConclusionsThe nominal group technique allowed consensus to be reached for a small-scale, prospective, cohort study and provided information to inform the design of a randomised controlled trial.

Implementation and evaluation of clinical supervision for support workers in a paediatric palliative care setting

Support workers represent a large proportion of the NHS workforce and yet their supervisory needs are often overlooked. This study focused specifically on a cohort of support workers in a community paediatric palliative care setting. Peer supervision was implemented for this group, initially face to face and then virtually. The experiences of clinical supervision for this group were investigated through responses to an online survey ( n = 25) and two focus groups ( n = 7). Survey data were analysed concurrently with a thematic analysis. The following themes and sub-themes were developed from transcribed focus groups: (1) Barriers to engagement (2) Being Listened to (3) What Worked Well: Logistics. Overall, delivery of supervision was effective to a mixed degree – though support workers appreciated a space to be listened to, their distrust of colleagues and other barriers impeded the capacity of supervision to achieve more than support and catharsis for this group. Future projects should focus on introducing more preliminary interventions to promote reflection and peer support for these groups as well as continue to consider the supervisory needs of support workers.

Challenges of paediatric palliative care in Romania: a focus groups study

Background The availability of palliative care facilities for children vary considerably among the European member states. In Romania, a country where health expenditure is among the lowest in Europe, palliative care has been mainly provided by charitable organizations. Despite the high number of children needing palliative care, there is scant literature and research available on paediatric palliative care in Romania. The study explores the viewpoints of various paediatric oncology providers with regard to paediatric palliative care provision in Romania. Methods Four mixed focus groups were conducted at four university-affiliated paediatric oncology centres located in three distinct Romanian regions (Bucuresti-llfov, Nord-Est and Nord-Vest). The focus groups were analyzed using thematic coding. Results For many healthcare professionals, emotional burden inherent to the profession; unhealthy work-life balance and understaffing were among the biggest barriers to the successful integration of pediatric palliative care. The lack of staff was attributed to a shortage of financial resources, and to the persisting cultural stigma surrounding palliative care and oncology. Also political turmoil was identified as an important obstacle to palliative care implementation. Conclusion Significant barriers persist limiting the broader implementation of pediatric palliative care in Romania. In order to render palliative care in pediatric oncology more sustainable, more attention should be paid to the mental health care of healthcare professionals working in this field, to the development of mobile palliative care services and to the emigration of skilled medical staff.

Parents’ experiences of initiation of paediatric advance care planning discussions: a qualitative study

Advance care planning enables parents to discuss their goal and wishes for the future treatment and care of their life-limited or life-threatened child. Whilst research has identified the barriers clinicians face to initiate such discussions, the views of the parents have received scant attention. This qualitative study, using reflexive thematic analysis, aimed to explore parents’ experience of the initiation of their child’s advance care planning discussions, to help provide an understanding to inform future practice. Single interviews were undertaken with 17 non-bereaved and bereaved parents. Parents reported they had engaged with future thinking but needed time before initiating this with clinicians. They identified the need for a trusted professional and time for private, thorough, non-judgemental discussion without feeling clinicians were ‘giving up’. Parents reported that advance care planning discussions were not always aligned to the dynamics of family life. They felt that health professionals were responsible for initiating advance planning conversations according to the families’ individual requirements. There was an apparent lack of standardised protocols to assist paediatric advance care planning discussion initiation.Conclusion: Initiating advance care planning is a complicated process that needs to be tailored to the specific parent and child situation. Health professionals need to appreciate that parents are key contributors to initiate engagement with advance care planning discussions but that they also require support and care, recognising this may facilitate the building of trust, identified as a key corner stone, of paediatric advance care planning initiation and engagement. What is Known:• In paediatric palliative care, parents are challenged with wanting to sustain hope whilst thinking and planning for their child’s end of life. Paediatric advance care planning discussions are often delayed or avoided and triggered by physical deterioration. What is New:• Previous relationship with HCP not essential but parental trust of the HCP is fundamental to Paediatric advance care planning initiation engagement. To build mutual trust health professionals’ approach needs to be professional, respectful and empathetic to the parent and child’s situation.• Subtle paediatric advance care planning parent initiation preparation by HCP is often unnoticed by parents but may be the crux of empowering parents to initiate advance care planning conversations themselves as they need to feel a sense of regaining control before planning ahead.