Questions directed to children with diverse communicative competencies in paediatric healthcare consultations.

OBJECTIVE: This paper examines question-response sequences, in which clinicians asked questions to child patients who appear to interact using means other than the verbal mode of communication. METHODS: Conversation Analysis methods were used to study questions in 46 paediatric palliative care consultations. These questions were directed towards children who observably used vocalisations and embodied modes of communication (e.g., gaze, gesture and facial expressions) but did not appear to use the verbal mode. RESULTS: Most questions asked children either about their willingness and preferences for a proposed next activity, or their current feelings, experiences or intentions. Questions involved children by foregrounding their preferences and feelings. These questions occasioned contexts where the child's vocal or embodied conduct could be treated as a relevant response. CONCLUSION: This paper demonstrates how questions are used to involve children in consultations about their own healthcare, and how their views come to be understood by clinicians and family members, even when children interact using means other than the verbal mode of communication. PRACTICE IMPLICATIONS: Questions can be asked of both children who do and do not verbally communicate. When asking questions, clinicians should be mindful of the modes of communication an individual child uses to consider how the child might meaningfully respond.

Attending to child agency in paediatric palliative care consultations: Adults' use of tag questions directed to the child.

Children's agency in their own lives is increasingly recognised as important, including within paediatric health care. The issue of acknowledging child agency is complex in the context of paediatric palliative care, where children have serious and complex conditions that often impact their ability to verbally communicate with others. This study explores how clinicians and parents/guardians direct talk towards a child patient when they are present in a consultation. Conversation analysis methods were used to examine 74 video-recorded paediatric palliative care consultations. Detailed turn-by-turn examination of the recorded consultations identified the recurrent use of a practice described by linguists as a 'tag question', which follows some statement (e.g. 'he loves that, don't ya'). Both clinicians and parents/guardians often directed these tag questions towards the child patient. Analysis demonstrated how these tag questions: (1) validated the child's epistemic authority over what was being said and (2) made a child's response a possible, but not necessary, next action. The findings are discussed in relation to the sociology of child agency and how this agency is acknowledged and displayed within and through social interaction. This research provides direct evidence of children's competence as informants about their own symptoms.

The pervasive relevance of COVID-19 within routine paediatric palliative care consultations during the pandemic: A conversation analytic study.

BACKGROUND: The importance of caring for children with complex and serious conditions means that paediatric palliative care must continue during pandemics. The recent pandemic of Coronavirus Disease 2019 (COVID-19) provides a natural experiment to study health communication during pandemic times. However, it is unknown how communication within consultations might change during pandemics. AIM: This study, a sub-study of a larger project, aimed to examine real-world instances of communication in paediatric palliative care consultations prior to and during the COVID-19 pandemic to understand how clinicians and families talk about the pandemic. DESIGN: Paediatric palliative care consultations prior to, during, and immediately following the initial peak of COVID-19 cases in Australia were video recorded and analysed using Conversation Analysis methods. SETTING/PARTICIPANTS: Twenty-five paediatric palliative care consultations (including face-to-face outpatient, telehealth outpatient and inpatient consultations) were video recorded within a public children's hospital in Australia. Participants included 14 health professionals, 15 child patients, 23 adult family members and 5 child siblings. RESULTS: There was a pervasive relevance of both serious and non-serious talk about COVID-19 within the consultations recorded during the pandemic. Topics typical of a standard paediatric palliative care consultation often led to discussion of the pandemic. Clinicians (55%) and parents (45%) initiated talk about the pandemic. CONCLUSIONS: Clinicians should not be surprised by the pervasiveness of COVID-19 or other pandemic talk within standard paediatric palliative care consultations. This awareness will enable clinicians to flexibly address family needs and concerns about pandemic-related matters that may impact health and wellbeing.

Supporting, failing to support and undermining breastfeeding self-efficacy: Analysis of helpline calls.

Although a complexity of factors explain early cessation of breastfeeding, the encounter of a problem is often a critical point in this decision. For this reason, breastfeeding self-efficacy, a mother's evaluations of her ability to successfully overcome challenges, is an effective target in interventions to sustain breastfeeding. This study examined factors affecting the success of one such intervention, reactive telephone support. Across a 4-week period, recordings of all calls to a nurse-staffed parent helpline in Queensland, Australia were made. Of these calls, 60 were from mothers encountering a breastfeeding problem. Using a standard protocol, each call was scored for trajectories of mother's breastfeeding self-efficacy from opening to close of call. Calls showing an upward trajectory were defined as supporting (53%), those with no change were defined as ineffective (25%), and those with downward trajectory as undermining (22%). Using trajectory scores, case exemplars were purposively selected for detailed analysis of interactional sequences to identify strategies that distinguished outcome. The supportive call was distinguished by information sharing, mutual trust and respectful relationships, and personalized affirmation and advice. The ineffective call focused on technical aspects of breastfeeding, whereas the undermining call made moral judgements of mother's behaviour. The findings identify interactional quality of telephone support, not simply provision, as the key success factor in reactive telephone support. The findings also present interactional quality as a potential explanation for inconsistent outcomes in evaluation of reactive telehealth interventions to support breastfeeding.

Finding a way with words: Delphi study to develop a discussion prompt list for paediatric palliative care.

BACKGROUND: Effective communication is a cornerstone of quality paediatric palliative care. Families report struggling, however, to know what to discuss, with whom, and when. Although question prompt lists exist for adult palliative care, they do not suit the unique circumstances of paediatric palliative care. AIM: To develop a prompt list suitable for paediatric palliative care. DESIGN: Underpinned by Delphi methodology, a six-phase procedure was adopted: (1) drafting items based on the findings of a literature review, (2) condensing the list of items based on group discussion, (3) refining items based on a survey of expert healthcare professionals, (4) additional refining of items based on another survey of professionals, (5) further refining of items based on cognitive interviews with family members, and (6) final review by healthcare professional and family member groups. PARTICIPANTS: Three participant groups were involved during various phases: (1) members of an Australasian paediatric palliative care national reference group, (2) healthcare professionals associated with a local paediatric palliative care service, and (3) family members who were users of the same local service. RESULTS: Through multi-phase consultation across participant groups, the draft question prompt list was refined progressively to 28 items, split across two booklets to allow end-of-life items to be provided separately, and reconceptualised as a discussion prompt list rather than a question prompt list. CONCLUSION: By involving representatives of major stakeholder groups, this study has facilitated the design of a prompt list suited to the circumstances of paediatric palliative care. Future research should trial the effectiveness of this resource.

Affording opportunities to discuss deterioration in paediatric palliative care consultations: a conversation analytic study.

OBJECTIVE: Discussing the potential deterioration of a child who has a life-limiting condition has recognised benefits for future care, but can be challenging in a clinical context where uncertain illness trajectories are common. Existing research is restricted to indirect forms of evidence such as self-report data from clinicians and families. This study directly explores how discussions about deterioration are managed within actual paediatric palliative care consultations. METHODS: 9 consultations were video recorded in an Australian paediatric palliative care service. Each consultation involved the same paediatric palliative care specialist. Conversation analysis was used to identify and explore recurrent ways in which discussions about deterioration came to be realised. FINDINGS: The study identified two communicative practices used by a paediatric palliative care specialist that afforded opportunities to discuss deterioration: (1) soliciting the family's agenda for the consultation; (2) initiating and maintaining topics where discussing deterioration is a relevant possibility. Across these different practices, a common feature was indirect initiation of discussions about deterioration. This approach made such discussions possible, but without mandating or even suggesting that such discussion must occur. CONCLUSIONS: These communicative practices balance the benefit of discussing deterioration against a recognised importance of allowing discussions to be directed by a child's family. This was achieved by creating opportunities for discussing deterioration, without making such discussions necessary.

Using physical objects with young children in 'face-to-face' and telehealth speech and language therapy.

PURPOSE: Speech language therapists increasingly are using telehealth to enhance the accessibility of their services. It is unclear, however, how play-based therapy for children can be delivered via telehealth. In particular, modalities such as videoconferencing do not enable physical engagement between therapists and clients. The aim of our reported study was to understand how physical objects such as toys are used in similar and different ways across videoconferenced and "face-to-face" (hereafter, "in-person") therapy. METHODS: We used conversation analytic methods to compare video-recorded therapy sessions for children delivered across in-person and telehealth settings. Utilising a broader corpus of materials, our analysis focused on four client-therapist dyads: two using videoconferencing, and two who met in-person. RESULTS: Both videoconferencing and in-person sessions enabled routine affordances and challenges for delivering therapy. Within in-person therapy, therapists made access to objects contingent upon the client producing some target expression. This contingency usually was achieved by restricting physical access to these objects. Restricting access to a toy was not necessary in videoconferenced therapy; therapists instead used techniques to promote engagement. CONCLUSIONS: When delivering play-based therapy via telehealth, our study demonstrates how practitioners adapt the intervention to suit the particular medium of its delivery. Implications for Rehabilitation Telehealth enhances equitable access for those who cannot physically access rehabilitation services. Telehealth modalities can create practical challenges, however, when delivering interventions such as play-based therapy. Practitioners should intentionally adapt telehealth interventions to suit the particular telehealth modality they are using.

Discussing death: Making end of life implicit or explicit in paediatric palliative care consultations.

OBJECTIVE: To consider whether and how family members and clinicians discuss end of life during paediatric palliative care consultations. METHODS: Nine naturally occurring paediatric palliative care consultations were video recorded and analysed using conversation analytic methods. ANALYSIS: Focusing on three consultations in which end of life was treated as a certain outcome, analysis explored ways in which end of life was made either implicit or explicit within these consultations. Our analysis suggests that end of life was made explicit when: 1) ancillary to the current focus of discussion, 2) in relation to someone else's child, or 3) specifically relevant to the local context of the discussion. More commonly, in all other instances in the data, end of life was made implicit during discussions relating to this matter. CONCLUSION: This preliminary research indicates that the local context of a conversation can influence how end of life is mentioned and discussed. PRACTICE IMPLICATIONS: Clinicians often are encouraged to promote honest and 'open' discussions about end of life. Our findings show that it is not necessary to explicitly mention end of life in order to discuss it.

Healthcare Users' Experiences of Communicating with Healthcare Professionals About Children Who Have Life-Limiting Conditions: A Qualitative Systematic Review.

BACKGROUND: Globally, an estimated eight million children could benefit from palliative care each year. Effective communication about children with life-limiting conditions is well recognized as a critical component of high-quality pediatric palliative care. OBJECTIVE: To synthesize existing qualitative research exploring healthcare users' experiences of communicating with healthcare professionals about children with life-limiting conditions. DESIGN: The results of a systematic literature search were screened independently by two reviewers. Raw data and analytic claims were extracted from included studies and were synthesized using thematic analysis methods for systematic reviews. DATA SOURCES: MEDLINE, PubMed, CINAHL, Embase, PsycINFO, Scopus, Web of Science, ProQuest, and ScienceDirect were searched for articles published in English between 1990 and May 2017. RESULTS: This review included 29 studies conducted across 11 countries and involving at least 979 healthcare users (adults [n = 914], patients [n = 25], and siblings [n = 40]). The four domains of communication experience identified through thematic synthesis are: Information, Emotion, Collaboration, and Relationship. Although included studies were from a range of settings and diverse populations, further research is needed to explore whether and how domains of communication experience differ across settings and populations. In particular, further research about children's palliative care experiences is needed. CONCLUSIONS: Healthcare users typically value communication with healthcare professionals: that (1) is open and honest, (2) acknowledges emotion, (3) actively involves healthcare users, and (4) occurs within established and trusting relationships.

Healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions: a qualitative systematic review protocol.

REVIEW QUESTION/OBJECTIVE: The objective of this review is to identify and synthesize the best international qualitative evidence on healthcare users' experiences of communication with healthcare professionals about children who have life-limiting conditions. For the purposes of this review, "healthcare users" will be taken to include children who have life-limiting conditions and their families. The question to be addressed is:What are healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions? BACKGROUND: The prospect of the death of a child from an incurable medical condition is harrowing, yet finding a way to discuss this prospect is crucial to maximize the quality of life for such children and their families. High-quality communication is well recognized as a core skill health care professionals need to maximize the quality of care they provide. This skill is valued by service users, who consistently rate it as one of the highest priorities for the care they receive. Evidence suggests, however, that healthcare professionals can feel ill-equipped or uncomfortable communicating with and about such children. Therefore, it is important to understand what represents high-quality communication and what is involved in accomplishing this within pediatric palliative care.In recent decades there has been an increased focus on providing palliative care for children who have life-limiting conditions. These are conditions for which no cure is available and for which the probable outcome is premature death. Palliative care may also be appropriate for children who have life-threatening conditions; these are conditions where there is not only a high probability of premature death but also a chance of long-term survival into adulthood Although pediatric palliative care is underpinned by the same philosophy as adult palliative care, children who have life-limiting conditions and their families have particular needs that distinguish them from users of adult palliative care. For example, at a physical level children are more likely than adults to have non-malignant conditions that follow trajectories in which children oscillate between feeling relatively well and acutely unwell. The social dynamic of their care is also radically different, particularly given the role of parents or guardians in making surrogate decisions about their child's care. Such factors warrant considering pediatric palliative care as distinct from palliative care more generally.Although the particular circumstances of children who have life-limiting conditions have led to development of pediatric palliative care, the particular provisions of this care differs among countries. One aspect of variation is the age range of patients. Pediatric palliative care is usually provided to neonates, infants, children, adolescents and young adults, but international variations in the definitions of these age ranges, particularly for adolescents and young adults, means pediatric palliative care is provided to different age groups in different countries. This review therefore adopts a pragmatic rather than an age-based definition of a pediatric palliative care, considering all studies relating to service users who are being cared for by pediatric rather than adult healthcare services.In catering for the unique needs of children who have life-limiting conditions and their families, pediatric palliative care aims to achieve pain and symptom management, enhanced dignity and quality of life, and psychosocial and spiritual care. It also seeks to incorporate care for patients' broader families and facilitating access to appropriate services and support. High-quality communication is crucial for achieving these aims. It enables healthcare users and providers to make decisions that underpin the care that is provided and the quality of the life that is possible for patients and their families.Although both users and providers recognize the value of high-quality communication with and about children who have life-limiting conditions, this does not mean that these stakeholders necessarily share the same perspective of what constitutes high-quality communication and the best way of accomplishing this. Focusing on healthcare users' experiences of communication with healthcare professionals about children who have life-limiting conditions, the present review will explore the subjective impact of professionals' communication on the people for whom they provide care.It may be necessary to consider a range of contextual factors to understand healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions. For instance, age, developmental stage, cognitive capacity, emotional and social strengths, and family dynamics can influence a child's level of involvement in discussions about their condition and care. Although there are factors that appear more consistent across the range of pediatric palliative care users, such as parents' preferences for being treated by healthcare professionals as partners in making decisions about the care of their child, there is not always such consistency. Nor is it clear whether such findings can be generalized across different cultural contexts. In appraising existing research, this systematic review will therefore consider the relationship between the context of individual studies and their reported findings.The primary aim of this review is to identify, appraise and synthesize existing qualitative evidence of healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions. The review will consider relevant details of these findings, particularly whether factors like age are relevant for understanding particular experiences of communication. An outcome of this review will be the identification of best available qualitative evidence that can be used to inform professional practice, as well as an identification of priorities for future research in pediatric palliative care.A preliminary search in MEDLINE and CINAHL found primary studies exploring healthcare users' experiences of aspects of communicating with healthcare professionals about children who have life-limiting conditions. A search was also conducted for existing systematic reviews in PubMed, CINAHL, EMBASE, PsycINFO, the Cochrane Database of Systematic Reviews, the JBI Database of Systematic Reviews and Implementation Reports, and PROSPERO. No systematic reviews on this topic were found.

Impact of a bronchiolitis clinical care pathway on treatment and hospital stay.

UNLABELLED: Bronchiolitis is a common lower respiratory tract infection of infancy where management has varied considerably in the past. The aim of the present study was to determine whether patient treatment and outcomes changed after introduction of a clinical care pathway. Infants aged up to 6 months admitted to hospital with bronchiolitis were identified as part of an annual audit of bronchiolitis management between winters 2003/2004 and 2009/2010. The primary outcome, duration of stay (DOS), was compared before and after the clinical pathway was introduced before the winter 2005/2006. There were 328 infants identified, mean age 75 days, respiratory syncitial virus was detected in 89%. After the clinical pathway was introduced, the proportion of infants prescribed salbutamol fell from 50% to 8% (p < 0.001) and ipratropium bromide from 38% to 0% (p < 0.001) but the proportion prescribed antibiotics was unchanged. The median DOS was 79 h prior to the clinical pathway and 66 h afterwards (p = 0.010) but there was no difference in days where supplemental oxygen or nasogastric feeding was required. CONCLUSIONS: A clinical pathway for the management of acute bronchiolitis can be implemented in the hospital setting and the conservative approach, in particular not prescribing bronchodilators, is not associated with prolonged duration of stay.

Managing medical advice seeking in calls to Child Health Line.

Child Health Line is a 24-hour Australian helpline that offers information and support for parents and families on child development and parenting. The helpline guidelines suggest that nurses should not offer medical advice; they do, however, regularly receive calls seeking such advice. This paper examines how the service guidelines are talked into being through the nurses' management of callers' requests for medical advice and information, and shows how nurses orient to the boundaries of their professional role and institutionally regulated authority. Three ways in which the child health nurses manage medical advice and information seeking are discussed: using membership as a nurse to establish boundaries of expertise, privileging parental authority regarding decision making about seeking treatment for their child, and respecifying a 'medical' problem as a child development issue. The paper contributes to research on medical authority, and nurse authority in particular, by demonstrating the impact of institutional roles and guidelines on displays of knowledge and expertise. More generally, it contributes to an understanding of the interactional enactment and consequences of service guidelines for telehealth practice, with implications for training, policy and service delivery.

Compatibility and conflict: negotiation of relationships by dizygotic same-sex twin girls.

This article conceptualizes the child as having active agency in the constructions of their social worlds, and reports on a study that understands the twin experiences from the perspectives of the twins. It examines how twins account for their relationships with their co-twins. The study drew on accounts of 60 twin children--10 monozygotic (MZ), 10 dizygotic (DZ) same-sex, 10 DZ opposite-sex pairs--aged 5 to 10 years and their parent (n = 30). The children engaged in a sticker activity in which they represented their friendships, including their friendship with their co-twin. Using the task as a resource, the children were asked about their friends, the attributes of friendship and examples of everyday friendships encounters. These were audio-recorded and transcribed. Further, parents completed a questionnaire that provided demographic information and asked parents about the children's social experiences including twin children's time spent together, shared interests and their co-twin relationship. Using data from the pictorial representation from the sticker task and parent questionnaires, differences in relationship between MZ, DZ same-sex and DZ opposite-sex twins were examined and used to select a smaller sample for detailed study. DZ same-sex twins tended to view their co-twin less favorably and there was a nonsignificant trend in which conflict was elevated, compared to the other two groups. Based on these findings, the transcripts selected for analysis focuses on the DZ same-sex girls. The girls reported that they had differences of thought, activity and self-presentation. Conflict, competition and challenge as types of social interaction were described, suggesting that the everyday relationship of the twin with her co-twin is always being negotiated and realigned. Evident here is the complexity of social interactions in which the twins engaged everyday with each other.