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Identifying key elements for paediatric advance care planning with parents, healthcare providers and stakeholders: A qualitative study.

ABSTRACT: BACKGROUND:Although international guidelines recommend discussions about goals of care and treatment options for children with severe and life-limiting conditions, there are still few structured models of paediatric advance care planning. AIM:The study aimed at identifying key components of paediatric advance care planning through direct discussions with all involved parties. DESIGN:The study had a qualitative design with a participatory approach. Participants constituted an advisory board and took part in two transdisciplinary workshops. Data were collected in discussion and dialogue groups and analysed using content analysis. SETTING/PARTICIPANTS:We included bereaved parents, health care providers and stakeholders of care networks. RESULTS:Key elements were discussions, documentation, implementation, timing and participation of children and adolescents. Parents engage in discussions with facilitators and persons of trust to reach a decision. Documentation constitutes the focus of professionals, who endorse brief recommendations for procedures in case of emergencies, supplemented by larger advance directives. Implementation hindrances include emotional barriers of stakeholders, disagreements between parents and professionals and difficulties with emergency services. Discussion timing should take into account parental readiness. The intervention should be repeated at regular intervals, considering emerging needs and increasing awareness of families over time. Involving children and adolescents in advance care planning remains a challenge. CONCLUSION:A paediatric advance care planning intervention should take into account potential pitfalls and barriers including issues related to timing, potential conflicts between parents and professionals, ambiguity towards written advance directives, the role of non-medical carers for paediatric advance care planning implementation, the need to involve the child and the necessity of an iterative process.

SUBMITTER: Hein K

PROVIDER: S-EPMC7074656 | biostudies-literature | 2020 Mar

REPOSITORIES: biostudies-literature

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Identifying key elements for paediatric advance care planning with parents, healthcare providers and stakeholders: A qualitative study.

Hein Kerstin K Knochel Kathrin K Zaimovic Vedrana V Reimann Daniel D Monz Anna A Heitkamp Nari N Borasio Gian Domenico GD Führer Monika M

Palliative medicine 20200127 3

<h4>Background</h4>Although international guidelines recommend discussions about goals of care and treatment options for children with severe and life-limiting conditions, there are still few structured models of paediatric advance care planning.<h4>Aim</h4>The study aimed at identifying key components of paediatric advance care planning through direct discussions with all involved parties.<h4>Design</h4>The study had a qualitative design with a participatory approach. Participants constituted a ...[more]

PMID: 31985331

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Project description:BackgroundAlthough advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient's values, preferences and goals of care, there are only a few models in paediatric oncology that capture ACP as a process of behaviour change. We aimed to develop and test the acceptability and feasibility of BOOST pACP (Benefits of Obtaining Ownership Systematically Together in paediatric Advance Care Planning) - an intervention to improve ACP in adolescents with cancer, their parents and paediatric oncologists.MethodsSeveral methods informed the intervention development process: 1) Problem identification: interviews with 11 healthcare professionals working in paediatric oncology; 2) Identification of evidence: literature review of existing pACP tools and barriers and facilitators in performing pACP; 3) Logic model and 4) Intervention design: collaborative expert meetings with researchers and professionals in pACP; 5a) Acceptability test of the materials: interviews with nine healthcare professionals, four adolescents and young adults with cancer and six parents; 5b) Feasibility test of core intervention components with three families, including interviews about their experiences.ResultsThe BOOST pACP intervention was iteratively developed and adapted, based on feedback from families, healthcare professionals, and pACP experts (e.g., components were changed, deleted, and added; formulation of themes and associated questions were amended to enhance acceptability). The core components of the BOOST pACP intervention include: four ACP conversation sessions with the adolescent and/or parent(s) provided by a trained facilitator, structured by interactive conversation cards covering different ACP themes, followed by a transfer of information from the intervention facilitator to the paediatric oncologist. Core intervention components were deemed feasible by all participating families.ConclusionThe BOOST pACP intervention was developed by close involvement of both adolescent patients and their parents, healthcare professionals and pACP experts. The final intervention and supporting materials are considered appropriate and feasible. Its effectiveness in improving parent-adolescent communication on ACP themes is currently being tested in a multi-centre randomised controlled trial. Researchers aiming to develop a complex psychosocial intervention for a vulnerable target group could use the step-by-step approach described in this paper.

Project description:BackgroundHospitalization offers an opportunity for healthcare providers to initiate advance care planning (ACP) conversations, yet such conversations occur infrequently. Barriers to these conversations include attitudes, skill, and time. Our objective was to develop a theory-based, provider-level intervention to increase the frequency of ACP conversations in hospitals.MethodsWe followed a systematic process to develop a theory-based, provider-level intervention to increase ACP conversations between providers and their hospitalized patients. Using principles established in Intervention Mapping and the Behavior Change Wheel, we identified a behavioral target, a theory of behavior change, behavior change techniques, and a mode of delivery. We addressed a limitation of these two processes of intervention development by also establishing a framework of design principles to structure the selection of intervention components. We partnered with a game development company to translate the output into a video game.ResultsWe identified willingness to engage in ACP conversations as the primary contributor to ACP behavior, and attitudes as a modifiable source of this willingness. We selected self-determination theory, and its emphasis on increasing autonomous motivation, as a relevant theory of behavior change and means of changing attitudes. Second, we mapped the components of autonomous motivation (i.e., autonomy, competence, and relatedness) to relevant behavior change techniques (e.g., identity). Third, we decided to deliver the intervention using a video game and to use the narrative engagement framework, which describes the use of stories to educate, model behavior, and immerse the user, to structure our selection of intervention components. Finally, in collaboration with a game development company, we used this framework to develop an adventure video game (Hopewell Hospitalist).ConclusionsThe systematic development of a theory-based intervention facilitates the mechanistic testing of the efficacy of the intervention, including the specification of hypotheses regarding mediators and moderators of outcomes. The intervention will be tested in a randomized clinical trial.

Project description:BackgroundIn acute-care hospitals, patients treated in an ICU for surgical reasons or sudden deterioration are treated in an outpatient ward, ICU, and other multiple departments. It is unclear how healthcare providers are initiating advance care planning (ACP) for such patients and assisting them with it. The purpose of this study is to clarify healthcare providers' perceptions of the ACP support provided to patients receiving critical care in acute-care hospitals.MethodsA cross-sectional study was conducted using questionnaires. In this study, 400 acute-care hospitals with ICUs in Japan were randomly selected, and 1490 subjects, including intensivists, surgeons, ICU nurses, surgical floor nurses, and surgical outpatient nurses, participated. Survey items examined whether ICU patients received ACP support, the participants' degree of confidence in providing ACP support, the patients' treatment preferences, and the decision-making process, and whether any discussion was conducted on change of values.ResultsResponses were obtained from 598 participants from 157 hospitals, 41.4% of which reportedly supported ACP provision to ICU patients. The subjects with the highest level of ACP understanding were surgeons (45.8%), and differences in understanding were observed across specialties (P < 0.001). Among the respondents, physicians and nurses expressed high levels of confidence in providing ACP support to patients requiring critical care. However, 15.2% of all the subjects mentioned that they would not attempt to resuscitate the patients. In addition, 25.7% of the participants handed over patients' values to other departments or hospitals, whereas 25.3% handed over the decision-making process.ConclusionsAmong the participating hospitals, 40% provided ACP support to patients receiving critical care. The low number is possibly because support providers lack understanding of the content of patients' ACP or about how to support and use ACP. Second, it is sometimes too late to start providing ACP support after ICU admission. Third, healthcare providers differ in their perception of ACP, widely considered an ambiguous concept. Finally, in acute-care hospitals with different healthcare settings, it is necessary to confirm and integrate the changes in feelings and thoughts of patients.

Project description:BackgroundGlobally, initiation of paediatric advance care planning discussions is advocated early in the illness trajectory; however, evidence suggests it occurs at crisis points or close to end of life. Few studies have been undertaken to ascertain the prevalence and determinants of behaviour related to initiation by the healthcare professional.MethodUnderpinned by the Capability, Opportunity, Motivation-Behaviour (COM-B) model for behaviour change, a cross-sectional online survey was conducted in United Kingdom and Ireland using a purposive sample of health professionals. Descriptive and inferential statistics were applied and nonparametric statistical analysis used. Open-ended questions were mapped and correlations between COM-B and demographic profiles identified.ResultsResponses (n = 140): Paediatric advance care planning was viewed positively; however, initiation practices were found to be influenced by wide ranging diagnoses and disease trajectories. Whilst some tools and protocols exist, they were not used in a systematic manner, and initiation behaviour was often not guided by them. Initiation was unstandardized, individually led, guided by intuition and experience and based on a range of prerequisites. Such behaviour, combined with inconsistencies in professional development, resulted in varying practice when managing clinical deterioration. Professionals who felt adequately trained initiated more conversations (capability). Those working in palliative care specialties, hospice settings and doctors initiated more discussions (opportunity). There was no difference in Motivation between professions, clinical settings or specialisms, although 25% (n = 35) of responses indicated discomfort discussing death and 34% (n = 49) worried about families' emotional reaction.ConclusionAlthough advocated, paediatric advance care planning is a complex process, commonly triggered by the physical deterioration and rarely underpinned by support tools. The COM-B framework was useful in identifying fundamental differences in initiation behaviour; however, further research is required to explore the complexity of initiation behaviour and the system within which the care is being delivered to identify influences on initiation.

Project description:BackgroundAdvance care planning (ACP) is a process involving conversations about values and preferences regarding future care at the end-of-life. ACP has led to positive outcomes, both in relation to quality of life and with increased use of palliative care, less life-sustaining treatment and fewer hospital admissions. Sweden has yet to embrace the practice systematically, but scattered initiatives exist.AimTo study implementation of a routine for ACP in NH settings in Sweden by exploring healthcare professionals' experiences of engaging in ACP following this implementation.MethodsThe study followed a qualitative inductive design with convenience and snowball sampling. Semi-structured group and individual interviews with registered healthcare professionals were analysed using qualitative content analysis.FindingsOrganisational support for sustainable ACP implementation was found to be essential. This included sufficient training, facilitation, collaboration and uniform work routines across providers and professionals. Engaging in ACP conversations following the implemented routine was found to be a process of preparing, being, talking, deciding and sharing.ConclusionsSuccessful implementation of ACP in NHs requires a carefully planned implementation strategy. ACP in NHs tend to be medically focused at the expense of residents' psychosocial care-planning needs. Widespread uptake of ACP in Sweden could be useful in the national effort to adopt more person-centred care in Swedish healthcare.KEY POINTS While advance care planning has been implemented in many other countries, Sweden lacks a national strategy on advance care planning and Swedish healthcare settings have yet to systematically implement this practice. • This study is the first to report on professionals' experiences of engaging in sustainable advance care planning, following top-down implementation of the practice in one Swedish region. • Successful implementation of advance care planning in nursing homes requires a system-level approach, and shortcomings of the implementation process are highlighted.

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Identifying key elements for paediatric advance care planning with parents, healthcare providers and stakeholders: A qualitative study.

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Identifying key elements for paediatric advance care planning with parents, healthcare providers and stakeholders: A qualitative study.

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