Palliative care for children and young people with stage 5 chronic kidney disease.

Death from stage 5 chronic kidney disease (CKD 5) in childhood or adolescence is rare, but something that all paediatric renal physicians and most paediatricians will encounter. In this paper, we present the literature on three key areas of palliative care practice essential to good clinical management: shared decision-making, advance care planning, and symptom management, with particular reference to CKD 5 where kidney transplant is not an option and where a decision has been made to withdraw or withhold dialysis. Some areas of care, particularly with regard to symptom management, have not been well-studied in children and young people (CYP) with CKD 5 and recommendations with regard to drug choice and dose modification are based on adult literature, known pharmacokinetics, and clinical experience.

Parents' responses to prognostic disclosure at diagnosis of a child with a high-risk brain tumor: Analysis of clinician-parent interactions and implications for clinical practice.

BACKGROUND: Previous studies have found that parents of children with cancer desire more prognostic information than is often given even when prognosis is poor. We explored in audio-recorded consultations the kinds of information they seek. METHODS: Ethnographic study including observation and audio recording of consultations at diagnosis. Consultations were transcribed and analyzed using an interactionist perspective including tools drawn from conversation and discourse analysis. RESULTS: Enrolled 21 parents and 12 clinicians in 13 cases of children diagnosed with a high-risk brain tumor (HRBT) over 20 months at a tertiary pediatric oncology center. Clinicians presented prognostic information in all cases. Through their questions, parents revealed what further information they desired. Clinicians made clear that no one could be absolutely certain what the future held for an individual child. Explicit communication about prognosis did not satisfy parents' desire for information about their own child. Parents tried to personalize prognostic information and to apply it to their own situation. Parents moved beyond prognostic information presented and drew conclusions, which could change over time. Parents who were present in the same consultations could form different views of their child's prognosis. CONCLUSION: Population level prognostic information left parents uncertain about their child's future. The need parents revealed was not for more such information but rather how to use the information given and how to apply it to their child in the face of such uncertainty. Further research is needed on how best to help parents deal with uncertainty and make prognostic information actionable.

Use of buccal morphine in the management of pain in children with life-limiting conditions: Results of a laboratory study.

BACKGROUND: Children and infants with impaired swallow or compromised enteral absorption require alternative routes for administration of analgesia. Recent clinical guidance and practice for paediatric palliative care teams, who often treat such children, supports buccal morphine sulphate as a fast acting, effective and easily administered agent for pain relief. However, a consideration of the physicochemical properties and potency of morphine would suggest that it is not a suitable candidate for delivery via the transmucosal route, raising questions about its use in children and infants. AIM: To explore the permeability of buccal morphine sulphate in an established ex vivo porcine buccal mucosa as a necessary step in examining efficacy for use in children with life-limiting conditions and life-threatening illnesses. DESIGN: A permeation study conducted with morphine sulphate in an ex vivo porcine buccal tissue model. Flux values and pharmacokinetic data were used to calculate the plasma values of morphine that would result following buccal administration in a 20kg child. RESULTS: Results show that the estimated steady state plasma values of morphine sulphate following buccal administration in this model do not achieve minimum therapeutic concentration. CONCLUSION: These data strongly suggest that morphine sulphate is not suitable for buccal administration and that further research is needed to establish its efficacy in relief of pain in children with life-limiting conditions and life-threatening illnesses.

Internet sites offering adolescents help with headache, abdominal pain, and dysmenorrhoea: a description of content, quality, and peer interactions.

OBJECTIVES: To analyze content and quality of headache, abdominal pain, and dysmenorrhoea websites, and to thematically analyze online pain forums. METHODS: Websites offering support, advice, or information regarding pain were explored. Websites were analyzed quantitatively using the Health-Related Website Evaluation Form and the DISCERN scale. Websites containing forum functions were thematically analysed assessing how the Internet is used for support and advice. RESULTS: 63 websites were included. Few websites scored in the upper quartiles of scores on the measures. 7 websites contained supportive posts, pertaining only to dysmenorrhoea. The ways users cope and the coping judgements of other forum users are presented thematically. 3 themes emerged: (1) passively engaged postings, (2) actively engaged postings, and (3) reactively engaged postings. CONCLUSIONS: Internet pain resources are of low quality and questionable value in providing help to adolescents. Future research should explore how to improve quality.

Case study: ethical guidance for pediatric e-health research using examples from pain research with adolescents.

OBJECTIVE: The Internet is a frequently used platform for research in pediatric and health psychology. However, there is little pragmatic guidance as to ethical best practice of this research. The absence of guidance is particularly prominent for online research with children. Our objective is to outline ethical issues in e-health research with children and adolescents using two exemplar studies in pediatric pain research. METHODS: The first study is an asynchronous message board discussion amongst teenagers with pain who are frequent internet users.The second study is a web-based behavioral intervention for the management of adolescent pain. RESULTS: Each exemplar study is discussed in the context of specific ethical considerations related to recruitment, informed consent and debriefing, privacy and confidentiality, and participant safety. Ethical issues regarding the evaluation of online psychological interventions are also discussed. CONCLUSIONS: Guidance on optimal ethical practice in e-health research is summarized.

The Physical Health of Caregivers of Children With Life-Limiting Conditions: A Systematic Review.

CONTEXT: Parental caregiving for a child with a life-limiting condition (LLC) is complex physical and mental work. The impact of this caregiving on parents' physical health is unknown. OBJECTIVES: (1) To review existing evidence on the physical health of parents caring for a child with a LLC and (2) to determine how physical health of parents is measured. DATA SOURCES: Medline, Embase, PsycINFO, and Cumulative Index of Nursing and Allied Health Literature were searched. STUDY SELECTION: Peer-reviewed articles were included if they reported primary data on the physical health of a caregiver of a child with a LLC. Studies were excluded if they described only the caregiver's mental health or if the caregivers were bereaved at the time of data collection. DATA EXTRACTION: Of 69 335 unique citations, 81 studies were included in the review. RESULTS: Caregiver health was negatively impacted in 84% of studies. Pain and sleep disturbance were the most common problems. Ways of measuring the physical health of caregiver varied widely. We found an absence of in-depth explorations of the social and economic contexts, which could potentially mitigate the impact of caregiving. Furthermore, we find health interventions tailored to this group remain largely unexplored. LIMITATIONS: Studies were heterogenous in methodology, making comparisons of results across studies difficult. CONCLUSIONS: These findings support the need for improving access to interventions aimed at improving physical health in this population. The rate of health-seeking behaviors, preventive health care access and screening for health conditions is understudied and represent important directions for further research.

'I have to live with the decisions I make': laying a foundation for decision making for children with life-limiting conditions and life-threatening illnesses.

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.

A mixed-method study of pain management practice in a UK children's hospital: identification of barriers and developing strategies to maintain effective in-patient paediatric pain management.

AIM: To assess Acute Pain Service and paediatric pain management efficacy in a UK specialist paediatric hospital to inform wider recommendations for future sustainability. BACKGROUND: UK paediatric acute pain services vary. Although comprehensive pain management guidelines exist, consensus on the best model of care is lacking. Worldwide, medical and pharmacological advances and rapid patient turnover have increased the challenges of managing hospitalized children's pain. Simultaneously nurses, who deliver the bulk of pain management, have experienced reduction in skill mix and training opportunities. Specialist Acute Pain Services have evolved to meet these demands; their overall efficacy is unknown. DESIGN: This mixed-methods study explores pain management practice at a UK paediatric hospital to assess current efficacy and future sustainability. METHOD: A 2013 case note review of all Acute Pain Services referrals over 14 days were compared with an interval sample of concurrent non-referred inpatient children; seven semi-structured interviews were conducted with a range of clinical staff. RESULTS: Twenty-two referrals of 15 children were made; 15 comparison children were identified. All 30 children (100%) were appropriately referred/non-referred. Acute Pain Services cases experienced higher pain levels, were more likely to have long term conditions, longer hospital stay and repeat admissions. Three key themes emerged through interview analysis: 'addressing pain', 'changing contexts' 'pain as an "expert" skill'. Increased specialization, reduced clarity between different pain modalities and decreased training opportunities had resulted in potentially unsustainable APS dependence.

Nursing culture: An enemy of evidence-based practice? A focus group exploration.

Evidence-based practice (EBP) is challenging for most nurses due to the time constraints of caring for patients and the emerging pressures of a changing health service. To explore these challenges, and thus to establish possible means of overcoming them, three focus groups (n = 17) with children's nurses were conducted. Participants were asked how they would define EBP, what the barriers to EBP were, what skills they needed to help access evidence and how they could integrate evidence into everyday practice. Data were analysed thematically and the anticipated themes of definitions of EBP, barriers, education and nursing culture were determined. Important subthemes were personal and employer disengagement, passivity and lack of resource utilisation. Passive use of evidence readily available in patient folders and on the wards was common. It seemed that little consideration was given to how often this evidence was updated. Nurses define their access to evidence as primarily passive in nature. This is reinforced by a lack of ready access to ongoing education and a perceived lack of investment at institutional level in their continued engagement with evidence. Promoting EBP needs to engage more with those ritual and traditional aspects of nursing culture to challenge these perceptions.

An online adolescent message board discussion about the internet: Use for pain.

Health-care systems seek to advance their care to adolescents through the online provision of information and support. An online, moderated, asynchronous discussion board called Let's Chat Pain was created to recruit adolescent users of online content for pain to a discussion about pain coping and associated Internet use. Participants were asked about everyday pain coping and the role they judge online information to play in this coping. They were asked about determinations of website reliability and validity for health but especially for help with pain problems. Themes around adolescent trust in online websites for pain and research are explored, in addition to inhibiting and disinhibiting factors associated with the Internet use for health. We found users to mistrust online content even when they know it to be valid. Further study is needed to assess if there are ways of instilling confidence in pain information presented online for this group.

Management of respiratory symptoms in paediatric palliative care.

PURPOSE OF REVIEW: Respiratory symptoms in children with life-limiting and life-threatening conditions are common, distressing and have a lasting impact, yet there is a paucity of evidence to guide clinicians in their management. This article makes a series of recommendations for the management of the most frequent and distressing respiratory symptoms encountered in paediatrics (dyspnoea, cough, haemoptysis and retained secretions) with attention to the evidence from research. RECENT FINDINGS: There are very few paediatric studies exploring any aspect of respiratory symptoms in paediatric palliative care, so much of the evidence base has been drawn from adult studies, few of which have been published in the past 12-18 months. SUMMARY: In the absence of well designed paediatric studies we need to judiciously apply what we can extrapolate from adult studies to each child we are treating; selecting interventions and approaches carefully, adjusting them when there is no evidence of individual benefit.

Searching the internet for help with pain: adolescent search, coping, and medication behaviour.

OBJECTIVES: To explore a community sample of adolescents for engagement with online pain resources. To assess if the use of the Internet to search for health information correlated with measures of coping, risk taking, catastrophizing about pain, and engaging in the self-management of pain. DESIGN: A cross-sectional online study of community-based adolescents (n = 105) recruited via schools to examine their use of the Internet to seek pain-related information. METHODS: Adolescents completed questionnaires of pain coping, catastrophic thinking, risk-taking behaviour, and medication use. Descriptive analyses were undertaken on event rates of pertinent behaviours, principally on information seeking and pain management behaviour. Correlational analyses were undertaken between coping and information seeking, and medication use. RESULTS: Few participants engaged in online pain information seeking. Those who did were more likely to be female and scored higher on medication use, catastrophizing, risk taking, and the total score on the Pain Coping Questionnaire. CONCLUSIONS: Although adolescents are high users of the Internet, paradoxically they do not appear to use the Internet for information about pain and pain management. Further research should assess inhibitory and disinhibitory factors associated with information seeking about pain and chronic illness on the Internet. STATEMENT OF CONTRIBUTION: What is already known on this subject? Internet use in adolescents is common, mobile, and displays a level of technical awareness unparalleled by adults. The internet is postulated in previous research to present a platform for the delivery of health care, particularly information to aid health decision-making for young people. What does this study add? This study explores how adolescents use the internet to look for health information, particularly on pain and where this falls in a general profile of coping with illness. Interestingly and counterintuitively, adolescents did not use the internet to look for health or pain information. We hypothesize that there may be something about information on pain management that does not readily transfer to the digital world in a way that is useful to adolescent users.