Recommendations for speech-language pathologists in paediatric palliative care teams (ReSP3CT): An international modified Delphi study.

Purpose: There is emerging recognition within the literature that speech-language pathologists (SLPs) have a role in the provision of paediatric palliative care (PPC). SLPs, however, experience unique challenges when working with this vulnerable young cohort of patients, their families and multidisciplinary teams. This study aims to develop practice recommendations based on best available evidence.Method: A modified Delphi technique was utilised to develop group consensus over a series of survey rounds. Statements for voting were synthesised by critically reviewing recurring themes from previous studies, involving (i) a scoping literature review, (ii) an online survey, and (iii) interview data. Nine participants were recruited using consecutive sampling from the interview phase related to this study.Result: Twenty-one statements were voted upon over two survey rounds (100% response rate). Agreement levels of ≥70% across all statements were reached after the first round. There was a significant correlation between rating a statement as "essential" and a strong level of agreement (p < 0.0001). Intraparticipant agreement between rounds is also reported.Conclusion: The 21 statements form Recommendations for Speech-Language Pathologists in Paediatric Palliative Care Teams (ReSP3CT). The statements will support SLPs working within PPC to promote advocacy, professional development and enhance team involvement in this developing field.

Speech-Language Pathologists in Pediatric Palliative Care: An International Study of Perceptions and Experiences.

Purpose The purpose of this study is to gather qualitative data regarding the experiences and perceptions of speech-language pathologists (SLPs) practicing in pediatric palliative care (PPC) and investigate their approaches for working with patients, families, and the multidisciplinary team. Method Ten participants from Australia, Canada, and the United States were recruited from a previous survey study. In-depth interviews were conducted via videoconferencing. Two coders used NVivo software to record and organize the data into themes. Interrater reliability of the coding was established with a third coder. The COnsolidated criteria for REporting Qualitative research 32-item checklist has been used for reporting the research. Results Interrater coding reliability (using weighted kappa) was .81, indicating "almost perfect" agreement on the selection of themes from the code frame. Emerging themes included clinical interventions, unique SLP skills in PPC, multidisciplinary team relationships, workforce issues, education and training, governance, medicolegal considerations, bioethical issues, and holistic care. Additional subthemes are also noted. In the absence of research evidence and practice recommendations, SLPs rely on client perspectives and clinical experience to guide their professional practice in PPC. Conclusions Qualitative survey analysis of the perceptions and experiences of SLP clinicians from three postindustrial countries identified nine major themes regarding PPC. Results expand on limited literature to date in the area of PPC. Future research using larger samples is needed to provide clinicians with best practice recommendations for working with patients, families, and the broader care team.

Perspectives of speech and language therapists in paediatric palliative care: an international exploratory study.

BACKGROUND: The involvement of speech and language therapists (SLTs) within paediatric palliative care (PPC) settings has been recognized within the extant literature. However, there is little understanding of SLT's specific roles and practices when working with this vulnerable cohort of children and their families. As part of a larger body of work to develop consensus-based recommendations for SLTs working in PPC, it is important to investigate demographic and caseload characteristics. AIMS: This exploratory study aimed to gather previously undocumented international demographic data pertaining to SLT service provision, caseload and training in PPC. Additionally, it sought to ascertain the current treatment and assessment approaches of SLTs, and if variations exist in beliefs and practices. METHODS & PROCEDURES: An anonymous cross-sectional survey was designed and reported according to the Checklist for Reporting Results of Internet E-Surveys (CHERRIES). The online survey consisted of 40 items spanning four domains: (1) demographic information, (2) caseload information, (3) service provision and (4) training and education. SLTs from Australia, Canada, New Zealand, the UK, Ireland and the United States were recruited using a purposive snowball sampling approach. Descriptive analysis of closed-ended survey responses and content analysis of open-ended responses are presented. OUTCOMES & RESULTS: A total of 52 respondents completed the survey. SLTs worked in a variety of PPC settings, with patients of varying age and disease groups. Over 50% of participants reported working in PPC for ≤ 4 years. Genetic disorders (34%), oncology (27%) and neurological conditions (21%) made up a significant portion of respondents' caseloads. Reported treatments and assessment approaches used by SLTs are not unique to a PPC population. Barriers and enablers for practice were identified. A portion of participants did not feel trained and prepared to assess (19.2%) or treat (15.4%) PPC clients. CONCLUSIONS & IMPLICATIONS: This study confirms that SLTs internationally have a role in the management of communication and swallowing impairments in a PPC context. However, whether current training and resources adequately support SLTs in this role remains questionable. This paper helps to provide SLTs, administrators, professional associations and tertiary institutions with foundational data to help inform workforce planning, advocacy efforts and training priorities. What this paper adds What is already known on the subject The published multidisciplinary literature has identified that SLTs have a role in PPC. However, there has been no targeted research investigating the professional characteristics of clinicians in this context, nor any detailed information regarding associated clinician beliefs or management approaches. What this paper adds to existing knowledge This study is a snapshot of attributes, practice patterns and beliefs of SLTs who work with a PPC population. It highlights SLT perspectives of education and training, as well as meta-perceptions of themselves within the multidisciplinary team. What are the potential or actual clinical implications of this work? Data presented in this paper will help to enable SLTs, organizations and associations to augment service provision and determine future professional development priorities within the field of PPC.

Speech-language pathologists in paediatric palliative care: a Delphi study protocol.

BACKGROUND: Given the dearth of literature and no clinical practice guidelines written for speech-language pathologists (SLPs) working in paediatric palliative care (PPC), a need has been identified to explore the scope of clinical practice and strategies used by SLPs. OBJECTIVE: This study aims to undertake an international investigation into the role and scope of practice of SLPs working in PPC to develop consensus-driven 'Recommendations for Speech-Language Pathologists in Paediatric Palliative Care Teams' (ReSP3CT). METHODS: A modified Delphi process will be used to synthesise consensus-based statements from SLPs in six different countries about their role and practice working in PPC. Initially, preliminary survey data will be collected from SLPs to obtain demographic and caseload information. Respondents will then be invited to participate in an in-depth interview to explore common and unique themes that emerge from the online survey. Participants from the interview will then 'opt-in' to become Delphi panel members and receive questionnaires comprising statements for agreement over multiple rounds. Statements will be based on common themes that arise from the literature review, survey and interview data. The Delphi process for each statement will stop if statements achieve ≥ 70 % agreement and an IQR of ≤ 1 (maximum of five rounds). CONCLUSION: This is the first study to investigate the role and practice of SLPs in PPC across internationally accepted scope of practice areas. The study will use existing frameworks for statistical analysis and a mixed-methods approach to aid in the synthesis of statements/recommendations for international consensus.

Speech-language pathology in paediatric palliative care: A scoping review of role and practice.

PURPOSE: Attempts have been made within the literature to clarify the role and scope of speech-language pathologists (SLPs) within paediatric palliative care (PPC). As SLP literature regarding adult/geriatric populations is gaining traction, it is fitting to investigate the role of SLPs in the management of infants and children in end-of-life care. METHOD: Arksey and O'Malley's ( 2005 ) scoping review method was utilised for searching multiple databases. Two database searches were undertaken. The first located literature in which SLP PPC intervention is specifically addressed. The second search utilised internationally recognised SLP scope of practice areas. Manual searching of reference lists was also utilised. RESULT: Themes identified included management of communication, feeding, upper-airway and oral health as well as the role of SLPs within a multidisciplinary PPC team. CONCLUSION: There is acknowledgement that SLPs have a role in PPC. However, there is little information identifying SLP involvement in the diagnosis and management of swallowing, cognition/communication, oral hygiene and upper airway issues. The available literature predominantly relies on limited adult palliative care research and does not address age-specific management approaches across the paediatric life-stage. Given an absence of SLP PPC guidelines, further research is warranted to explicitly define SLP scope of practice within this population.