Background: Risk minimization in research with bereaved parents is important. However, little is known about which research methods balance the sensitivity required for bereaved research participants and the need for generalizable results.
Aim: To explore parental experiences of participating in mixed method bereavement research via a pilot study.
Design: A convergent parallel mixed method design assessing bereaved parents’ experience of research participation.
Setting/participants: Eleven parents whose child was treated for cancer at The Royal Children’s Hospital, Brisbane completed the questionnaire/interview being piloted (n = 8 mothers; n = 3 fathers; >6 months and <6 years bereaved). Of these, eight parents completed the pilot study evaluation questionnaire, providing feedback on their experience of participation.
Results: Participants acknowledged the importance of bereaved parents being central to research design and the development of bereavement programs. Sixty-three per cent (n = 5/8) of parents described completion of the questionnaire as ‘not at all/a little bit’ of a burden. Seventy-five per cent (n = 6/8) of parents opting into the telephone interview described participation as ‘not at all/a little bit’ of a burden. When considering the latest timeframes for participation in bereavement research 63% (n = 5/8) of parents indicated ‘no endpoint.’ Findings from the pilot study enabled important adjustments to be made to a large-scale future study.
Conclusions: As a research method, pilot studies may be utilized to minimize harm and maximize the potential benefits for vulnerable research participants. A mixed method approach allows researchers to generalize findings to a broader population while also drawing on the depth of the lived experience.
Palliative care is a growing specialty that addresses the needs of individuals diagnosed with advanced illness and their caregivers. Although palliative care has been shown to improve a variety of patient- and caregiver-centered outcomes, access to comprehensive palliative care services for patients is often limited. There is a need to identify the most effective approaches to delivering palliative care to patients in community settings. In fiscal year 2017, based on extensive input from a diverse set of stakeholders, the Patient-Centered Outcomes Research Institute (PCORI) funded nine multisite comparative clinical effectiveness research (CER) trials focused on community-based delivery of palliative care for a total investment of $80 million. These studies, focusing on advance care planning and models of palliative care delivery, represent some of the largest most complex palliative care trials funded to date. Each study evaluates both patient and caregiver outcomes, and together, these trials include a broad range of health conditions, interventions, and settings of care. PCORI has also fostered a learning network of the funded awardees to facilitate the successful conduct of these CER studies and to support awardee efforts to develop collaborative products relevant to advancing the field of palliative care research and practice. The protocols of each of the nine trials, detailed in this issue, demonstrate the expansive reach of the investment PCORI has made in an effort to further the research agenda and provide substantive research evidence in stakeholder-identified areas of need in the field of palliative care.
Introduction: For many patients, primary care is an appropriate setting for advance care planning (ACP). ACP focuses on what matters most to patients and ensuring health care supports patient-defined goals. ACP may involve interactions between a clinician and a patient, but for seriously ill patients ACP could be managed by a team.
Methods: We are conducting a cluster randomized trial comparing team-based to clinician-focused ACP using the Serious Illness Care Program (SICP) in 42 practices recruited from 7 practice-based research networks (PBRNs). Practices were randomized to one of the two models. Patients are referred to the study after engaging in ACP in primary care. Our target enrollment is 1260 subjects. Patient data are collected at enrollment, six months and one year. Primary outcomes are patient-reported goal-concordant care and days at home. Secondary outcomes include additional patient measures, clinician/team experience, and practice-level measures of SICP implementation.
Study Implementation: This trial was designed and is conducted by the Meta-network Learning and Research Center (Meta-LARC), a consortium of PBRNs focused on integrating engagement with patients, families, and other stakeholders into primary care research and practice. The trial pairs a comparative effectiveness study with implementation of a new program and is designed to balance fidelity to the assigned model with flexibility to allow each practice to adapt implementation to their environment and priorities. Our dissemination will report the results of comparing the two models and the implementation experience of the practices to create guidance for the spread of ACP in primary care.
BACKGROUND: Research is needed to improve care and diminish suffering for children with life-limiting illnesses and their parents. However, there are doubts about whether it is possible to conduct paediatric end of life research safely and ethically, as it may unduly burden or inadvertently harm participants.
AIM: To compare and evaluate responses from participants to the assessments of burdens and benefits that were conducted at two timepoints during a phenomenological study that investigated parents' experiences of having a child with life-limiting cancer participate in a Phase I clinical trial.
DISCUSSION: Parents reported that participating in the study was beneficial and resulted in minimal burden or distress. The assessment of benefits and burdens at the first timepoint appeared sufficient to understand participants' experiences.
CONCLUSION: This study adds to the evidence that research may be safely and effectively conducted with parents of children who are deceased or have life-limiting illnesses. Further research is needed to evaluate the most effective timing of assessments of the burdens and benefits of their participation in research.
IMPLICATIONS FOR PRACTICE: It is important when conducting research with people with life-limiting illnesses or their family members to assess the burdens and benefits of their participation, to understand their experiences and assist in its conduct.
This article offers a reflection of two studies conducted with bereaved college students and the feedback on motivations to be interviewed about their grief experiences. Although this was not the initial intent of the original mixed methods study, the unexpected and overwhelming response of students who signed up to interview about their grief experiences warranted an additional examination to explore this surprising phenomenon. Responses in 45 interviews centered on motivations of wanting to share their experiences, feeling safe sharing their experiences, and wanting to help other students who may be experiencing grief. Implications and recommendations for future research are provided.
OBJECTIVES: Sickle cell disease (SCD) is a serious illness with disabling acute and chronic pain that needs better therapies, but insufficient patient participation in research is a major impediment to advancing SCD pain management. The purpose of this article is to discuss the challenges of conducting an SCD study and approaches to successfully overcoming those challenges.
DESIGN: In a repeated-measures, longitudinal study designed to characterize SCD pain phenotypes, we recruited 311 adults of African ancestry. Adults with SCD completed 4 study visits 6 months apart, and age- and gender-matched healthy controls completed 1 visit.
RESULTS: We recruited and completed measures on 186 patients with SCD and 125 healthy controls. We retained 151 patients with SCD with data at 4 time points over 18 months and 125 healthy controls (1 time point) but encountered many challenges in recruitment and study visit completion. Enrollment delays often arose from patients' difficulty in taking time from their complicated lives and frequent pain episodes. Once scheduled, participants with SCD cancelled 49% of visits often because of pain; controls canceled 30% of their scheduled visits. To facilitate recruitment and retention, we implemented a number of strategies that were invaluable in our success.
CONCLUSION: Patients' struggles with illness, chronic pain, and their life situations resulted in many challenges to recruitment and completion of study visits. Important to overcoming challenges was gaining the trust of patients with SCD and a participant-centered approach. Early identification of potential problems allowed strategies to be instituted proactively, leading to success.
CONTEXT: Chinese medicine modalities, including acupuncture and Chinese herbal medicine (CHM), have been used as palliative interventions among cancer patients. More research should be conducted to confirm their effectiveness.
OBJECTIVES: To prioritize Chinese medicine clinical research questions for cancer palliative care.
METHODS: Twelve international experts, including physicians, Chinese medicine practitioners, nurses and clinical research methodologists (n=3 from each category) from Asia, North America, Australia and Europe participated in a two-round Delphi survey for prioritizing 29 research questions identified from existing systematic reviews. The experts were asked to i) rate clinical importance of answering the questions on a 9-point Likert scale; ii) provide qualitative comments on their ratings; and iii) suggest outcome measurement approaches.
RESULTS: Eight research priorities reached positive consensus after the two-round Delphi survey. Six of the priorities focused on acupuncture and related therapies; of which median ratings on importance ranged from 7.0 to 8.0 (interquartile range (IQR): 1.00 to 2.50), and the percentage agreement ranged from 75.0% to 91.7%. The remaining two priorities related to CHM; with median ratings ranged from 7.0 to 8.0 (IQR: 1.00 to 1.50), with percentage agreement ranged from 75.0% to 83.3%. Neither positive nor negative consensus was established among the remaining 21 questions.
CONCLUSION: The findings will inform rational allocation of scarce research funding for evaluating the effectiveness of Chinese medicine for cancer palliative care, especially on acupuncture and related therapies. Further research on herb safety and herb-drug interaction should be performed before conducting international trials on CHM.
PURPOSE: Bereavement research has helped to improve end-of-life practices in the ICU. However, few studies have explored bereaved relatives experience of research participation in this context. We aimed to explore the experience of bereaved relatives' participation in the ARREVE study which included three telephone follow-up calls to complete several quantitative tools.
METHODS: Volunteer relatives who participated in the 12-month follow-up call completed a questionnaire about research participation that included ten open-ended questions so that respondents could use their own words and thoughts. These open-ended questions were analyzed using qualitative analysis that examines themes within the data.
RESULTS: 175/311 relatives completed the questionnaire. Three themes were derived from the thematic analysis: (1) struggling: reactivation of emotional distress associated with the ICU experience and the loss is frequent, specifically during the 1st follow-up call. (2) Resilience: as time goes by, research participation becomes increasingly positive. The calls are a help both in giving meaning to the relatives' experience and in accepting the loss. (3) Recognition: research calls can compensate for the absence of support during bereavement.
CONCLUSION: Although some emotional difficulties must be acknowledged, bereavement research is overall associated with benefits, by facilitating emotional adjustments, meaning-making and resilience. Lack of support and social isolation during bereavement are frequent experiences, revealing that support strategies for bereaved relatives should be developed after the loss of a loved one in the ICU.
CONTEXT: In order to dramatically advance the evidence base for pediatric palliative care (PPC) interventions, practices, and programs in the United States and similar practice settings, the field needs to better understand the challenges and opportunities for rigorous scholarship.
OBJECTIVES: The Pediatric Palliative Care Research Network conducted a workshop to clarify challenges and identify key priorities.
METHODS: The workshop focused on PPC research topics and methods, including: outcomes measurement, qualitative inquiry, analyses of "big data," prospective collection of research data, case series and cohort studies, and intervention trials, with synthesizing summary and follow-up discussions. All attendees reviewed and approved the final report.
RESULTS: Five common challenges were identified: patient diversity and small population size; interdependencies and dynamic interactions between child, family members, and disease processes over time; outcomes and measurement; workforce and infrastructure limitations; and presumed burden of PPC research upon participants. Seven priorities emerged: bolster training and development of PPC investigators; develop core resources; advance symptom measurement (and measurements of other exposures and outcomes); improve symptom management and quality of life interventions; improve communication, elicitation of goals of care, and decision-making; understand family impact and facilitate or improve family adaptation and coping; and analyze and improve systems of care, policy, and education.
CONCLUSION: These challenges and priorities identify key research areas that can guide individual investigators and research funders to advance the field.
Cet article se veut une occasion de parler de la relève en recherche en soins palliatifs et de fin de vie (SPFV). Il décrit la première journée scientifique étudiante organisée par le comité étudiant du Réseau québécois de recherche en soins palliatifs et de fin de vie (RQSPAL), qui a eu lieu le 15 mars dernier à Québec. Nous vous présentons d'abord notre comité et son mandat. Cela permettra de décrire les motivations entourant la création et l'organisation de cette première journée scientifique étudiante. Nous brosserons ensuite un portrait des différentes activités planifiées au cours de cette journée et des champs d'intérêts portés par la relève. Une réflexion amorcée lors de cette journée scientifique et poursuivie par le comité étudiant sur certians thèmes abordés lors d'une table ronde avec des experts en SPFV sera également partagée. Finalement, nous concluerons en vous présentant le bilan de cette première journée scientifique du comité étudiant et en vous lançant une invitation.
We aimed to identify practitioners’ perspectives on current research priorities in grief and bereavement care. Grief and bereavement care providers were invited to participate in a three-phase Delphi study to create expert consensus on the top priorities for grief and bereavement research. A total of 140 participants completed Phase 1, 84 completed Phase 2, and 70 completed Phase 3. These top 10 research priorities form the basis of a practice-based research agenda for grief and bereavement care to enable researchers to respond to key issues in grief and bereavement care that will ultimately improve the lives of bereaved people.
BACKGROUND: Patient/carer involvement in palliative care research has been reported as complex, difficult and less advanced compared to other areas of health and social care research. There is seemingly limited evidence on impact and effectiveness.
AIM: To examine the evidence regarding patient/carer involvement in palliative care research and identify the facilitators, barriers, impacts and gaps in the evidence base.
DESIGN: Qualitative evidence synthesis using an integrative review approach and thematic analysis.
DATA SOURCES: Electronic databases were searched up to March 2018. Additional methods included searching websites and ongoing/unpublished studies, author searching and contacting experts. Eligibility criteria were based on the SPICE (Setting, Perspective, Intervention, Comparison, Evaluation) framework. Two quality assessments on methodology and involvement were undertaken.
RESULTS: A total of 93 records were included. Eight main themes were identified, mainly concerning facilitators and barriers to effective patient and carer involvement in palliative care research: definitions/roles, values/principles, organisations/culture, training/support, networking/groups, perspectives/diversity, relationships/communication and emotions/impact. Evidence on the impact of involvement was limited, but when carried out effectively, involvement brought positive benefits for all concerned, improving the relevance and quality of research. Evidence gaps were found in non-cancer populations and collaborative/user-led involvement.
CONCLUSION: Evidence identified suggests that involvement in palliative care research is challenging, but not dissimilar to that elsewhere. The facilitators and barriers identified relate mainly to the conduct of researchers at an individual level; in particular, there exists a reluctance among professionals to undertake involvement, and myths still perpetuate that patients/carers do not want to be involved. A developed infrastructure, more involvement-friendly organisational cultures and a strengthening of the evidence base would also be beneficial.
Recruitment challenges to clinical research studies in palliative care settings, particularly in hospices, are well documented. However, a recent study (Hospice Inpatient Deep vein thrombosis Detection (HIDDen) study) performed across five hospices in the UK recruited above target and on time. We describe strategies that aided successful recruitment in this study, and the lessons learnt for improving future studies. A recent review suggested that the 'Social Marketing Mix Framework' (SMMF) could help researchers with recruitment strategies in palliative care. We describe the recruiting strategies employed through the Social Marketing Mix lens and consider if it would be a useful framework for future researchers to use at the planning stage. Successful recruitment strategies employed in HIDDen study included: (i) addressing particular study-related factors, (ii) ensuring all patients were screened and offered participation if eligible, (iii) reducing impact on the clinical team through dedicated research nurses at sites, (iv) addressing research team issues with cross-cover between sites, where geographically possible, and (v) regular video conferencing meetings for support and collaborative solving of challenges. Limited pre-existing research infrastructure at most of the recruiting hospices created particular challenges. The SMMF provides a potential structure to help researchers to plan recruitment. However, to fully streamline trial set up and in order for hospice involvement in research to be realised systematically, a centralised approach to governance, organisational culture change whereby hospices embrace research as a legitimate purpose and consistent access to research staff are identified as key strategic elements promoting recruitment to studies in hospices.
La conflictualité présente au sein de toute relation humaine et donc dans toute relation de soin occupe nécessairement une place aussi prépondérante dans la recherche en sciences humaines et sociales. La psychologie clinique, qui vise à donner du sens à ces divers conflits, afin non pas de les faire taire à tout prix mais bien de permettre leur expressivité, se doit aussi de s'interroger sur les conflits qu'elle porte en elle-même.
Background: Advanced care planning (ACP) is a process that involves thinking about what medical care one would like should individuals be seriously ill and cannot communicate decisions about treatment for themselves. The literature indicates that ACP leads to increased satisfaction from both patients and healthcare professionals. Despite the well-known benefits of ACP, it is still underutilised in Australia.
Methods: The aim of this study is to investigate the effects of normalising ACP in acute and community settings with the use of specially trained normalisation agents. This is a quasi-experimental study, involving 16 sites (8 intervention and 8 control) in two health districts in Australia. A minimum of total 288 participants will be recruited (144 intervention, 144 control). We will train four registered nurses as normalisation agents in the intervention sites, who will promote and facilitate ACP discussions with adult patients with chronic conditions in hospital and community settings. An audit of the prevalence of ACP and Advanced Care Directives (ACDs) will be conducted before and after the 6-month intervention period at the 16 sites to assess the effects of the ACP service delivered by these agents. We will also collect interview and survey data from patients and families who participate, and healthcare professionals who are involved in this service to capture their experiences with ACP.
Discussion: This study will potentially contribute to better patient outcomes with their health care services. Completion of ACDs will allow patients to express their wishes for care and receive the care that they wish for, as well as ease their family from the burden of making difficult decisions. The study will contribute to development of a new best practice model to normalise ACP that is sustainable and transferable in the processes of: 1) initiation of conversation; 2) discussion of important issues; 3) documentation of the wishes; 4) storage of the documented wishes; and 5) access and execution of the documented wishes. The study will generate new evidence on the challenges, strategies and benefits of normalising ACP into practice in acute and community settings.
Background: In healthcare, many service evaluation questionnaires use free-text boxes without formal mechanisms for analysis. Patients and carers spend time documenting concerns that are often ignored or managed locally in an ad hoc manner. Currently, palliative care experiences of patients and carers in Wales are measured using a service evaluation questionnaire, comprising both closed and open-ended questions. Previous research, exploring free-text responses from this questionnaire, suggests that questionnaire refinement should accommodate service users' expressed priorities and concerns, and highlights the need to incorporate free-text data analysis strategies during study design.
Methods: Results from a previous analysis of 596 free-text responses provided the basis for an expert consensus day, where the current service evaluation questionnaire was refined. The refined version was tested during cognitive interviews with patients (n=10) and carers (n=7) receiving palliative care from 1 of 2 UK hospices. Data were analysed thematically.
Results: Interviews highlighted minor areas for change within the questionnaire and provided broader insight into patients' experiences of palliative care services. Patients and carers place an emphasis on simplifying language, decreasing the numeric response range and reducing written instructions; relying instead on visual cues, including formatting and layout. Findings highlighted the importance patients attached to providing meaningful free-text contributions.
Conclusions: Questionnaire refinement should use the patient perspective to effectively facilitate respondent understanding, pertinence and usability. The importance of employing data analysis strategies during questionnaire design may reduce research waste, thus enabling a better interrogation of service provision.
BACKGROUND: Contemporary health policies call for consumers to be part of all aspects of service planning, implementation, delivery and evaluation. The extent to which consumers are part of the systemic decision-making levels of palliative care appears to vary between and within services and organisations.
AIM: The aim of this systematic review is to develop understandings about consumer and carer leadership in palliative care.
DESIGN: A systematic, narrative synthesis approach was adopted due to the heterogeneity of included studies. The review was registered on PROSPERO prospectively (PROSPERO 2018 CRD42018111625).
DATA SOURCES: PubMed, Scopus and PsycINFO were searched for all studies published in English specifically focusing on consumers' leadership in palliative care organisations and systems. Articles were appraised for quality using a modified JBI-QARI tool.
RESULTS: Eleven studies met the inclusion criteria and quality assessment. Consumers are currently involved in leadership of palliative care teaching, research and services. Findings highlight the benefits of consumer leadership in palliative care including more relevant, higher-quality services, teaching and research. Across the included studies, it was not clear the extent to which consumer leaders had influence in relation to setting agendas across the palliative care sector.
CONCLUSION: The findings suggest that more could be done to support consumer leadership within palliative care. Academics and clinicians might improve the relevance of their work if they are able to more meaningfully partner with consumers in systemic roles in palliative care.
BACKGROUND: A lack of public awareness of palliative care (PC) has been identified as one of the main barriers to appropriate PC access. Internet search query analysis is a novel methodology, which has been effectively used in surveillance of infectious diseases, and can be used to monitor public awareness of health-related topics.
OBJECTIVES: We aimed to demonstrate the utility of internet search query analysis to evaluate changes in public awareness of PC in the USA between 2005 and 2015.
METHODS: Google Trends provides a referenced score for the popularity of a search term, for defined regions over defined time periods. The popularity of the search term 'palliative care' was measured monthly between 1/1/2005 and 31/12/2015 in the USA and in the UK.
RESULTS: Results were analysed using independent t-tests and joinpoint analysis. The mean monthly popularity of the search term increased between 2008-2009 (p<0.001), 2011-2012 (p<0.001), 2013-2014 (p=0.004) and 2014-2015 (p=0.002) in the USA. Joinpoint analysis was used to evaluate the monthly percentage change (MPC) in the popularity of the search term. In the USA, the MPC increase was 0.6%/month (p<0.05); in the UK the MPC of 0.05% was non-significant.
DISCUSSION: Although internet search query surveillance is a novel methodology, it is freely accessible and has significant potential to monitor health-seeking behaviour among the public. PC is rapidly growing in the USA, and the rapidly increasing public awareness of PC as demonstrated in this study, in comparison with the UK, where PC is relatively well established is encouraging in increasingly ensuring appropriate PC access for all.
This chapter provides an overview or “roadmap” to behavioral intervention research in hospice and palliative care. It begins with an introduction to key concepts that will be explored throughout the book, defining the book’s scope and overarching purpose. Next, it outlines a model of behavioral intervention research in hospice and palliative care, emphasizing the keystone concepts of stakeholder engagement, cultural congruence, ethical conduct of research, and inclusion of interdisciplinary perspectives. The chapter concludes with a brief explanation of the book’s organization and an outline of the content presented in each subsequent chapter.