Evaluation showed that stakeholders valued the support provided by the Implementing Pediatric Advance Care Planning Toolkit.
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ABSTRACT: Aim
This study described the development, and pilot evaluation, of the Implementing Pediatric Advance Care Planning Toolkit (IMPACT).Methods
Key elements of paediatric advance care planning (ACP) were defined using a systematic review, a survey of 168 paediatricians and qualitative studies of 13 children with life-limiting conditions, 20 parents and 18 paediatricians. Participants were purposively recruited from six Dutch university hospitals during September 2016 and November 2018. Key elements were translated into intervention components guided by theory. The acceptability of the content was evaluated by a qualitative pilot study during February and September 2019. This focused on 27 children with life-limiting conditions from hospitals, a hospice and home care, together with 41 parents, 11 physicians and seven nurses who cared for them.Results
IMPACT provided a holistic, caring approach to ACP, gave children a voice and cared for their parents. It provided information on ACP for families and clinicians, manuals to structure ACP conversations and training for clinicians in communication skills and supportive attitudes. The 53 pilot study participants felt that IMPACT was appropriate for paediatric ACP.Conclusion
IMPACT was an appropriate intervention that supported a holistic approach towards paediatric ACP, focused on the child's perspective and provided care for their parents.
SUBMITTER: Fahner J
PROVIDER: S-EPMC7818164 | biostudies-literature | 2021 Jan
REPOSITORIES: biostudies-literature
Publications
Evaluation showed that stakeholders valued the support provided by the Implementing Pediatric Advance Care Planning Toolkit.
Fahner Jurrianne J Rietjens Judith J van der Heide Agnes A Milota Megan M van Delden Johannes J Kars Marijke M
Acta paediatrica (Oslo, Norway : 1992) 20200623 1
<h4>Aim</h4>This study described the development, and pilot evaluation, of the Implementing Pediatric Advance Care Planning Toolkit (IMPACT).<h4>Methods</h4>Key elements of paediatric advance care planning (ACP) were defined using a systematic review, a survey of 168 paediatricians and qualitative studies of 13 children with life-limiting conditions, 20 parents and 18 paediatricians. Participants were purposively recruited from six Dutch university hospitals during September 2016 and November 20 ...[more]
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Project description:BackgroundPatients undergoing hemodialysis have a high mortality rate and yet underutilize palliative care and hospice resources. The Shared Decision Making-Renal Supportive Care (SDM-RSC) intervention focused on goals of care conversations between patients and family members with the nephrologist and social worker. The intervention targeted deficiencies in communication, estimating prognosis, and transition planning for seriously ill dialysis patients. The intervention showed capacity to increase substantially completion of advance care directives. The HIGHway Project, adapted from the previous SDM-RSC, scale up training social workers or nurses in dialysis center in advance care planning (ACP), and then support them for a subsequent 9-month action period, to engage in ACP conversations with patients at their dialysis center regarding their preferences for end-of-life care.MethodsWe will train between 50-60 dialysis teams, led by social workers or nurses, to engage in ACP conversations with patients at their dialysis center regarding their preferences for end-of-life care. This implementation project uses the Knowledge to Action (KTA) Framework within the Consolidated Framework for Implementation Research (CFIR) to increase adoption and sustainability in the participating dialysis centers. This includes a curriculum about how to hold ACP conversation and coaching with monthly teleconferences through case discussion and mentoring. An application software will guide on the process and provide resources for holding ACP conversations. Our project will focus on implementation outcomes. Success will be determined by adoption and effective use of the ACP approach. Patient and provider outcomes will be measured by the number of ACP conversations held and documented; the quality and fidelity of ACP conversations to the HIGHway process as taught during education sessions; impact on knowledge and skills; content, relevance, and significance of ACP intervention for patients, and Supportive Kidney Care (SKC) App usage. Currently HIGHway is in the recruitment stage.DiscussionEffective changes to advance care planning processes in dialysis centers can lead to institutional policy and protocol changes, providing a model for patients receiving dialysis treatment in the US. The result will be a widespread improvement in advance care planning, thereby remedying one of the current barriers to patient-centered, goal-concordant care for dialysis patients.Trial registrationThe George Washington University Protocol Record NCR213481, Honoring Individual Goals and Hopes: Implementing Advance Care Planning for Persons with Kidney Disease on Dialysis, is registered in ClinicalTrials.gov Identifier: NCT05324878 on April 11th, 2022.
| S-EPMC9286956 | biostudies-literature
Project description:Pediatric advance care planning seeks to ensure end-of-life care conforming to the patients/their families' preferences. To expand our knowledge of advance care planning and "medical orders for life-sustaining treatment" (MOLST) in pediatric palliative home care, we determined the number of patients with MOLST, compared MOLST between the four "Together for Short Lives" (TfSL) groups and analyzed, whether there was a relationship between the content of the MOLST and the patients' places of death. The study was conducted as a single-center retrospective analysis of all patients of a large specialized pediatric palliative home care team (01/2013-09/2016). MOLST were available in 179/198 children (90.4%). Most parents decided fast on MOLST, 99 (55.3%) at initiation of pediatric palliative home care, 150 (83.4%) within the first 100 days. MOLST were only changed in 7.8%. Eighty/179 (44.7%) patients decided on a Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) order, 58 (32.4%) on treatment limitations of some kind and 41 (22.9%) wished for the entire spectrum of life-sustaining measures (Full Code). Most TfSL group 1 families wanted DNACPR and most TfSL group 3/4 parents Full Code. The majority (84.9%) of all DNACPR patients died at home/hospice. Conversely, all Full Code patients died in hospital (80% in an intensive care setting). The circumstances of the childrens' deaths can therefore be predicted considering the content of the MOLST. Regular advance care planning discussions are thus a very important aspect of pediatric palliative home care.
| S-EPMC5915160 | biostudies-literature
Project description:There is a paucity of scalable advance care planning strategies that achieve the diverse goals of patients, families, and clinicians. We convened key stakeholders to gain their perspectives on developing a Web-based advance care planning tool for lung disease.We conducted semistructured interviews with 50 stakeholders: 21 patients with lung disease, 18 surrogates, and 11 clinicians. Interviews explored stakeholders' desired content and design features of a Web-based advance care planning tool. Participants also rated the tool's acceptability and potential usefulness. We analyzed the interviews with modified grounded theory and validated themes through member checking.Stakeholders highly rated the acceptability (median, 5; interquartile range, 5-5) and potential usefulness (median, 5; interquartile range, 4-5) of a Web-based tool. Interviewees offered several suggestions: (1) use videos of medical scenarios and patient narratives rather than text, (2) include interactive content, and (3) allow the user control over how much they complete in 1 sitting. Participants identified challenges and potential solutions, such as how to manage the emotional difficulty of thinking about death and accommodate low computer literacy users.There is strong stakeholder support for the development of a Web-based advance care planning tool for lung disease.
| S-EPMC4628837 | biostudies-literature
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.
| S-EPMC10088918 | biostudies-literature
Project description:Background and objectivesLittle is known about how families respond to pediatric advance care planning. Physicians are concerned that initiating pediatric advance care planning conversations with families is too distressing for families. We examined the effect of family centered pediatric advance care planning intervention for teens with cancer (FACE-TC) advance care planning on families' appraisals of their caregiving, distress, and strain.MethodsIn a randomized clinical trial with adolescents with cancer and their families conducted from July 2016 to April 2019 in 4 tertiary pediatric hospitals, adolescents and family dyads were randomly assigned at a 2:1 intervention/control ratio to either the 3 weekly sessions of FACE-TC (Advance Care Planning Survey; Next Steps: Respecting Choices; Five Wishes) or treatment-as-usual. Only the family member was included in this study. Generalized estimating equations assessed the intervention effect measured by Family Appraisal of Caregiving Questionnaire.ResultsFamilies' (n = 126) mean age was 46 years; 83% were female, and 82% were white. FACE-TC families significantly increased positive caregiving appraisals at 3-months postintervention, compared with those in the control group (β = .35; 95% confidence interval [CI] 0.19 to 0.36; P = .03). No significant differences were found between groups for strain (β = -.14; 95% CI = -0.42 to 0.15; P = .35) or distress (β = -.01; CI = -0.35 to 0.32; P = .93).ConclusionsFamilies benefited from participation in FACE-TC, which resulted in positive appraisals of their caregiving for their child with cancer, while not significantly burdening them with distress or strain. Clinicians can be assured of the tolerability of this family-supported model.
| S-EPMC8442842 | biostudies-literature
Project description:BackgroundAnticipatory planning in the UK focuses on supporting people who anticipate periods of impaired capacity to express their wishes about future care through processes such as advance care planning. Other countries have extended anticipatory planning to include processes for people to prospectively express their preferences about research participation. Advance research planning (ARP) is thought to extend autonomy and ensure that 'proxy' decisions about research are based on their wishes and preferences.MethodsA cross-sectional survey was conducted with two stakeholder groups (members of the public including people living with capacity-affecting conditions and family members; researchers and other professionals) who were recruited via research registries and other routes. Online questionnaires were used to capture the perspectives of the two groups. Responses were analysed using descriptive statistics and content analysis.ResultsA total of 327 participants (members of the public n = 277, professionals n = 50) completed the survey (November 2022 - March 2023). ARP was supported by 97% of public contributors and 94% of professionals. Participants thought that ARP should include the person's general wishes about research, specific types of studies, and who should make decisions on their behalf. They identified a number of challenges, including how ARP could take account of changes in individuals' preferences or circumstances whilst protecting their rights and interests. Implementation barriers included the potential time, complexity, and cost involved. These could be addressed by embedding ARP in existing anticipatory planning pathways and aligning it with other research enrolment activities. Relationships and trust played a key role, including underpinning who should support the delivery of ARP, how they are trained, and when it is undertaken.ConclusionsThere were high levels of support for introducing ARP in the UK. Further research should explore practical barriers and stakeholder concerns and identify any unintended consequences. Future activities should include developing ARP interventions alongside training and other resources, and also focus on public awareness campaigns, and engaging policymakers and other stakeholders.
| S-EPMC10492324 | biostudies-literature
Project description:BackgroundClose to half of all deaths in Norway occur in nursing homes, which signals a need for good communication on end-of-life care. Advance care planning (ACP) is one means to that end, but in Norwegian nursing homes, ACP is not common. This paper describes the protocol of a project evaluating an ACP-intervention in Norwegian nursing homes. The aims of this research project were to promote the possibility for conversations about the end of life with patients and relatives; promote patient autonomy; create a better foundation for important decisions in the case of medical emergencies and at the end of life; and gain experiences in order to find out what characterizes good ACP and good implementation strategies.Methods/designThis study was a mixed method study including a cluster-randomized clinical trial. Eight nursing home wards or "clusters" were pair-matched, and one ward from each pair was randomly selected for a 12-month intervention. The intervention consisted of implementing an ACP-guideline. Implementation strategies were training and supervision of project teams and staff in using the guideline, written information to patients and next of kin, and information meetings with nursing home staff. The project was evaluated using both quantitative and qualitative data, and both outcome and process evaluation. Quantitative data included patient chart reviews of ACP, diagnoses, patient preferences for decision-making and treatment, values and wishes that are more general, documented life-prolonging treatment and hospitalizations, and concordance between patient wishes and treatment. The primary outcome was documented ACP. Qualitative data included observations of conversations, interviews with patients, next of kin and health care personnel, logs from project coordinators and conversations, and transcripts from meetings with project teams in the intervention group.DiscussionThis project attempted to increase the quality and use of ACP in Norwegian nursing homes (NH). A mixed methods approach, inclusion of patients with dementia, attempts to involve, as many patients as possible, and a sustainable implementation plan adapted to real life in nursing homes were strengths of the project.
| S-EPMC6090595 | biostudies-literature
Project description: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.
| S-EPMC7074656 | biostudies-literature
Project description:BackgroundAdvance care planning (ACP) is particularly appropriate for persons with early dementia (PWED) since it promotes conversations about dementia-specific illness scenarios, addresses inconsistencies between advance directives and patients' observed behavior, emphasizes prospective and relational autonomy, and may be generally consistent with older persons' decision-making needs. However, despite evidence of its benefits, ACP is yet to become widely used among PWED. In this paper, we present a dementia-specific tool developed in Western Switzerland, discuss results of a pilot trial designed to promote ACP among PWED and their relatives, and discuss the feasibility and acceptability of the intervention and the study protocol in prevision of a large scale trial.MethodsThis one-arm pre-post pilot trial consisted of four visits, with visits 2 and 3 being the ACP intervention. Quantitative outcome measures during visit 1 and 4 assessed the aptitude of the intervention to support PWED autonomy and relatives' knowledge of PWED's preferences. Feasibility was explored according to how the recruitment procedure unfurled and based on the necessary revisions to the study protocol and healthcare providers' reason for excluding a PWED from the study. Acceptability was assessed according to pre-post evaluations, difficulties regarding the intervention or trial participation, and pre-post qualitative interviews regarding participants' reasons to participate to the study, satisfaction with the tool and difficulties perceived.ResultsThe ACP intervention itself was well received by PWED and their relatives that expressed satisfaction with the procedure, especially regarding the opportunity to discuss a sensitive topic with the help of a facilitator. Five main challenges in terms of feasibility were 1) to locate eligible patients, 2) to tailor recruitment procedures to recruitment locations, 3) to adapt inclusion criteria to clinical routines, 4) to engage PWED and their relatives in ACP, and 5) to design a trial that does not burden PWED. Despite these challenges, the intervention increased the number of advance directives, the concordance between PWED's preferences and relatives' decision on their behalf, and relatives' perceived control over healthcare decisions.ConclusionMisconceptions about dementia and ACP, in the patient, relatives, and healthcare providers, combined with structural and institutional challenges, have the power to impede research and implementation of ACP in dementia care. For this reason, we conclude that a large scale trial to test a dementia-specific tool of ACP is currently not feasible in Western Switzerland and should be endorsed in a systemic approach of ACP.Trial registrationThis trial was registered in the database clinicaltrial.gov with the number NCT03615027 .
| S-EPMC8524211 | biostudies-literature
Project description:BackgroundThere is an increasing number of interactive web-based advance care planning (ACP) support tools, which are web-based aids in any format encouraging reflection, communication, and processing of publicly available information, most of which cannot be found in the peer-reviewed literature.ObjectiveThis study aims to conduct a systematic review of web-based ACP support tools to describe the characteristics, readability, and quality of content and investigate whether and how they are evaluated.MethodsWe systematically searched the web-based gray literature databases OpenGrey, ClinicalTrials.gov, ProQuest, British Library, Grey Literature in the Netherlands, and Health Services Research Projects in Progress, as well as Google and app stores, and consulted experts using the following eligibility criteria: web-based, designed for the general population, accessible to everyone, interactive (encouraging reflection, communication, and processing of information), and in English or Dutch. The quality of content was evaluated using the Quality Evaluation Scoring Tool (score 0-28-a higher score indicates better quality). To synthesize the characteristics of the ACP tools, readability and quality of content, and whether and how they were evaluated, we used 4 data extraction tables.ResultsA total of 30 tools met the eligibility criteria, including 15 (50%) websites, 10 (33%) web-based portals, 3 (10%) apps, and 2 (7%) with a combination of formats. Of the 30 tools, 24 (80%) mentioned a clear aim, including 7 (23%) that supported reflection or communication, 8 (27%) that supported people in making decisions, 7 (23%) that provided support to document decisions, and 2 (7%) that aimed to achieve all these aims. Of the 30 tools, 7 (23%) provided information on the development, all of which were developed in collaboration with health care professionals, and 3 (10%) with end users. Quality scores ranged between 11 and 28, with most of the lower-scoring tools not referring to information sources.ConclusionsA variety of ACP support tools are available on the web, varying in the quality of content. In the future, users should be involved in the development process of ACP support tools, and the content should be substantiated by scientific evidence.Trial registrationPROSPERO CRD42020184112; https://tinyurl.com/mruf8b43.
| S-EPMC9069298 | biostudies-literature