Experiences with implementing advance care planning (ACP-GP) in Belgian general practice in the context of a cluster RCT: a process evaluation using the RE-AIM framework.

BACKGROUND: General practice is often recommended as an ideal setting to initiate advance care planning (ACP), but uptake of ACP in this setting is low. ACP-GP is a complex intervention to facilitate ACP for patients with chronic, life-limiting illness in Belgian general practice. It aims to increase patient ACP engagement and general practitioner (GP) ACP self-efficacy. In a cluster-randomized controlled trial, the intervention was not superior to control in increasing these outcomes. A parallel process evaluation aimed to enhance understanding of how the intervention was implemented, and which factors might have influenced trial results. METHODS: We conducted a mixed-methods process evaluation following the Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) framework. Data sources include recruitment and implementation monitoring, questionnaires for patients and GPs, and semi-structured (focus group) interviews with patients and GPs. Questionnaire data were analyzed descriptively. Qualitative data were first analyzed inductively; themes were then assigned deductively to RE-AIM dimensions. RESULTS: Thirty-five GPs and 95 patients were recruited to the trial; GP reach was low. Sixteen GPs and 46 patients provided questionnaire data at 3 months post-baseline; qualitative data were transcribed for 14 GPs and 11 patients. Adoption of intervention components was moderate to good, with the exception of the documentation template for GPs. Interviews revealed varying patient attitudes towards ACP, but patients nonetheless emphasized that conversations made them feel reassured. GPs especially valued a positive framing of ACP. When adopted, the intervention was well-implemented and participant satisfaction was high. However, intention for maintenance was moderate, with GPs raising questions of how to sustainably implement ACP conversations in the future. CONCLUSIONS: Implementing the complex ACP-GP intervention in general practice is feasible, and can be successful. However, the implementation process is challenging and the sustainability is suboptimal. Our findings will guide future research and recommendations for facilitating and implementing ACP in general practice. TRIAL REGISTRATION: ISRCTN12995230; prospectively registered on 19/06/2020.

"A sincere 'how are you?' is already a sign of acknowledgement that you're there too." - Interview study on the support needs of adolescents and young adults (AYAs) living with a parent with cancer.

PURPOSE: Parental cancer brings changes and challenges which affect the whole family. Evidence shows heightened psychosocial risk among the offspring. Research among adolescents and young adults (AYAs) facing parental cancer has mainly focused on these psychosocial problems. As a reaction, there has been an increase in research on the needs of this population, since this knowledge is crucial for developing appropriate support. Despite this increase, some AYAs are still underrepresented, namely those over eighteen years old and those who have a parent with incurable cancer. Moreover, the factors hampering or fostering access to and receipt of support addressing their needs are under-investigated. Increasing our understanding of these issues is crucial to developing more effective support interventions for these young people. Our aim was therefore to gain insight into the perceived support needs of AYAs who have a parent with cancer, including the mentioned underrepresented subgroups, and the perceived factors facilitating or hindering their use of support. METHODS: We conducted semi-structured interviews with 17 AYAs who have a parent with cancer of any type and stage, which were analyzed using conventional Qualitative Content Analysis (QCA). RESULTS: Six main categories emerged from the data, encompassing various subcategories: 1) Needs surrounding the time of disclosure, 2) Information needs, 3) Informal support needs, 4) Need for effective personal coping strategies, 5) Formal support needs, and 6) Contextual and medical factors affecting support needs. AYAs perceived family members, friends and teachers as important sources of informal support, but lacked contact with peers who also have a parent with cancer. They expressed a need for formal informational and emotional support from their parent's medical team, (onco)psychologists, and their general practitioner. AYAs faced barriers in accessing formal support. A proactive attitude from healthcare providers and information about available support would help them meet their needs. Furthermore, we shed new light on needs and issues in post-secondary education. CONCLUSIONS: AYAs who are living with their parent with cancer experience informational, emotional, and practical needs in multiple contexts, such as the home, school, leisure and hospital environment. They identify their informal and formal network as important key figures in addressing these needs.

Using behavioral theories to study health-promoting behaviors in palliative care research.

BACKGROUND: Behavioral theories are often used to better understand and change health-promoting behaviors and develop evidence-based interventions. However, researchers often lack of knowledge on how to use these theories in palliative care and people confronted with serious illness. Clear examples or guidelines are needed. AIM: To describe how behavioral theories can be used to gain insight into critical factors of health-promoting behavior in seriously ill people, using a case example of "starting a conversation about palliative care with the physician" for people with incurable cancer. METHODS: We used a health promotion approach. Step 1: We chose a theory. Step 2: We applied and adapted the selected theory by performing interviews with the target population which resulted in a new behavioral model. Step 3: We operationalized the factors of this model. An expert group checked content validity. We tested the questionnaire cognitively. Step 4: We conducted a survey study and performed logistic regression analyses to identify the most important factors. RESULTS: Step 1: We selected the Theory of Planned Behavior. Step 2: This theory was applicable to the target behavior, but needed extending. Step 3: The final survey included 131 items. Step 4: Attitudinal factors were the most important factors associated with the target behavior of starting a conversation about palliative care with the physician. CONCLUSIONS: This paper describes a method applied to a specific example, offering guidance for researchers and practitioners interested in understanding and changing a target behavior and its factors in seriously ill people.

Identification of the most important factors related to people with cancer starting a palliative care conversation: A survey study.

OBJECTIVE: A late conversation about palliative care needs can lead to suboptimal care in the final months/weeks of life. Insight into factors related to patients' communication about palliative care is needed. This study aims to identify the factors associated with starting/intending to start a conversation about palliative care with the physician. METHODS: We performed a cross-sectional interviewer-administered survey among people with incurable cancer. Purposive sampling was used, taking into account theoretically relevant heterogeneity. The questionnaire was developed based on the theory of planned behavior. Uni- and multivariable logistic regression analyses were performed. RESULTS: Out of 80 participants, ten (13%) started the palliative care conversation and 18 (23%) intended to do so. People holding a positive attitude towards starting/intending to start the conversation (odds ratio [OR] 4.74; 95% CI 2.35-9.54), perceiving more benefits of it (OR 2.60; 95% CI 1.37-4.96) and perceiving a positive attitude towards the behavior in family/friends (OR 2.07; 95% CI 1.26-3.41) and the physician (OR 2.19; 95% CI 1.39-3.45) were more likely to start/intend to start a palliative care conversation; people perceiving more disadvantages (OR 0.53; 95% CI 0.32-0.87) and barriers (OR 0.31; 95% CI 0.15-0.63) were less likely to do so. These factors explained 64% of the variance. CONCLUSIONS: Our findings show that psychological and perceived socio-environmental factors, particularly patients' attitudes, are associated with starting a conversation about palliative care. Theory-based interventions targeting these strong associations might have a high potential to empower people with cancer to take the initiative in communication about palliative care and to improve timely initiation of palliative care.

Palliative care utilisation: family carers' behaviours and determinants-a qualitative interview study.

OBJECTIVES: Most research on starting palliative care focuses on the role of healthcare services and professional carers. However, patients and their family carers may also play a role. Especially opportunities for starting palliative care might exist among family carers. This study focused on family carers by identifying their behaviours and underlying determinants that might contribute to starting palliative care. METHODS: A qualitative study with 16 family carers of deceased persons who used palliative care was conducted using semistructured, face-to-face interviews. Constant comparison analysis was used to identify groups of behaviours that influenced starting palliative care and related determinants. The behavioural determinants were matched with concepts in existing behavioural theories. A preliminary behavioural model was developed. RESULTS: Most reported behaviours regarding starting palliative care were related to communicating with the seriously ill person, other family members and professional carers; seeking information and helping the seriously ill person process information from professional carers; and organising and coordinating care. Determinants facilitating and hindering these behaviours included awareness (eg, of poor health), knowledge (eg, concerning palliative care), attitudes (eg, negative connotations of palliative care) and social influences (eg, important others' opinions about palliative care). CONCLUSIONS: This study identified relevant family carers' behaviours and related determinants that can contribute to starting palliative care. As these determinants are changeable, the palliative care behavioural model that resulted from this study can serve as a basis for the development of behavioural interventions aiming at supporting family carers in performing behaviours that might contribute to starting palliative care.

A systematic review of quality improvement initiatives for continuous sedation until death.

BACKGROUND: Extensive debate surrounds the practice of continuous sedation until death within end-of-life care. AIM: To provide insight into existing initiatives to support the practice of continuous sedation until death and assess their feasibility and effectiveness. DESIGN: Systematic review and narrative synthesis, registered on PROSPERO (CRD42020149630). DATA SOURCES: Records were searched through MEDLINE, EMBASE, CENTRAL, CINAHL, and Web of Science from inception to April 16 2020. Peer-reviewed studies reporting original data on initiatives to support the practice of continuous sedation were included for review. RESULTS: Twenty-one studies met the criteria and were included. Initiatives were focused on assessment tools of consciousness and discomfort (9), the use of guidelines and protocols (8), and expert consultation (3). All initiatives were reported as useful, acceptable, and feasible. Studies on the use of monitoring devices showed that a small proportion of patients were found to be awake, despite the patient being unresponsive according to the observer-based sedation scales. However, the wide range of values of these monitoring devices for comfortable and adequately sedated patients seems to hamper its overall implementation in daily clinical practice. Physicians reported changes in practice conform to guideline recommendations but the shift was modest at best. Expert consultation was regarded as supportive when sufficient expertise is lacking and helpful in avoiding possibly unnecessary sedations. CONCLUSIONS: The reviewed initiatives may contribute to improvement of continuous sedation until death, though their evidence base is rather limited. More insight is needed into their feasibility, preconditions for effective implementation and impact in actual practice.

Healthcare interventions improving and reducing quality of life in children at the end of life: a systematic review.

BACKGROUND: Children with serious illness suffer from symptoms at the end of life that often fail to be relieved. An overview is required of healthcare interventions improving and decreasing quality of life (QOL) for children with serious illness at the end of life. METHODS: A systematic review was performed in five databases, January 2000 to July 2018 without language limit. Reviewers selected quantitative studies with a healthcare intervention, for example, medication or treatment, and QOL outcomes or QOL-related measures, for example, symptoms, for children aged 1-17 years with serious illness. One author assessed outcomes with the QualSyst and GRADE (Grades of Recommendation, Assessment, Development, and Evaluation) Framework; two authors checked a 25% sample. QOL improvement or reduction was categorized. RESULTS: Thirty-six studies met the eligibility criteria studying 20 unique interventions. Designs included 1 randomized controlled trial, 1 cross-sectional study, and 34 cohort studies. Patient-reported symptom monitoring increased QOL significantly in cancer patients in a randomized controlled trial. Dexmedetomidine, methadone, ventilation, pleurodesis, and palliative care were significantly associated with improved QOL, and chemotherapy, stem cell transplant, and hospitalization with reduced QOL, in cohort studies. CONCLUSIONS: Use of patient-controlled symptom feedback, multidisciplinary palliative care teams with full-time practical support, inhalation therapy, and off-label sedative medication may improve QOL. Curative therapy may reduce QOL. IMPACT: QOL for children at the end of life may be improved with patient-controlled symptom feedback, multidisciplinary palliative care teams with full-time practical support, inhalation therapy, and off-label sedative medication. QOL for children at the end of life may be reduced with therapy with a curative intent, such as curative chemotherapy or stem cell transplant. A comprehensive overview of current evidence to elevate currently often-failing QOL management for children at the end of life. New paradigm-level indicators for appropriate and inappropriate QOL management in children at the end of life. New hypotheses for future research, guided by the current knowledge within the field. Various healthcare interventions (as described above) could or might be employed as tools to provide relief in QOL management for children with serious illness, such as cancer, at the end of life, and therefore could be discussed in pediatrician end-of-life training to limit the often-failed QOL management in this population, cave the one-size-fits-all approach for individual cases. Multidisciplinary team efforts and 24/7 presence, especially practical support for parents, might characterize effective palliative care team interventions for children with serious illness at the end of life, suggesting a co-regulating link between well-being of the child partly to that of the parents Hypothesis-oriented research is needed, especially for children with nonmalignant disorders, such as genetic or neurological disorders at the end of life, as well as QOL outcomes for intervention research and psychosocial or spiritual outcomes.

The perception of people with cancer of starting a conversation about palliative care: A qualitative interview study.

OBJECTIVE: Communication and patient-centred care are important determinants for timely initiation of palliative care. Therefore, we aimed to understand and explain the behaviour "starting a conversation about palliative care with a professional carer" from the perspective of people with incurable cancer. METHODS: A qualitative study using semi-structured face-to-face interviews with 25 people with incurable cancer: 13 not (yet) receiving palliative care and 12 receiving palliative care; 4 started the conversation themselves. Determinants related to the defined behaviour were matched with concepts in existing behavioural theories. RESULTS: Both positive and negative stances towards starting a conversation about palliative care with a professional carer were found. Influencing behavioural factors were identified, such as knowledge (e.g. about palliative care), attitude (e.g. association of palliative care with quality of life) and social influence (e.g. relationship with the professional carer). We modelled the determinants into a behavioural model. CONCLUSION: The behavioural model developed helps to explain why people with incurable cancer do or do not start a conversation about palliative care with their professional carer. By targeting the modifiable determinants of the model, promising interventions can be developed to help patients taken the initiative in communication about palliative care with a professional carer.

What influences intentions to request physician-assisted euthanasia or continuous deep sedation?

The increasing prevalence of euthanasia in Belgium has been linked to changing attitudes. Using National health survey data (N = 9651), we investigated Belgian adults' intention to ask a physician for euthanasia or continuous deep sedation in the hypothetical scenario of a terminal illness and examined its connection to sociodemographic and health characteristics. Respectively, 38.3 and 25.8% could envisage asking for euthanasia and continuous deep sedation. Those with very bad to fair subjective health and with depression more likely had an intention to ask for euthanasia, which suggests need for attention in the evaluation of requests from specific patient groups.

Socio-Ecological Variables Associated with Context-Specific Sitting Time in Belgian Older Adults: A One-Year Follow-Up Study.

INTRODUCTION: Knowledge about variables associated with context-specific sitting time in older adults is limited. Therefore, this study explored cross-sectional and longitudinal associations of socio-demographic, social-cognitive, physical-environmental and health-related variables with sitting during TV viewing, computer use and motorized transport in older adults. METHODS: A sample of Belgian older adults completed structured interviews on context-specific sitting time and associated variables using a longitudinal study design. Objective measurements of grip strength and physical performance were also completed. Complete baseline data were available of 258 participants (73.98±6.16 years) of which 229 participants remained in the study at one year follow-up (retention rate: 91.60%). Cross-sectional correlates (baseline data) and longitudinal predictors (change-scores in relation with change in sitting time) were explored through multiple linear regression analyses. RESULTS: Per context-specific sitting time, most of the cross-sectional correlates differed from the longitudinal predictors. Increases over time in enjoyment of watching TV (+one unit), encouragement of partner to watch less TV (+one unit) and TV time of partner (+30.0 min/day) were associated with respectively 9.1 min/day (p<0.001), 16.0 min/day (p<0.001) and 12.0 min/day (p<0.001) more sitting during TV viewing at follow-up. Increases over time in enjoyment of using a computer (+one unit), the number of smartphones and tablets (+1) and computer use of the partner (+30.0 min/day) were associated with respectively 5.5 min/day (p < .01), 10.4 min/day (p < .05) and 3.0 min/day (p < .05) more sitting during computer use at follow-up. An increase over time in self-efficacy regarding taking a bicycle or walking was associated with 2.9 min/day (p < .05) less sitting during motorized transport at follow-up. CONCLUSIONS: The results stressed the importance of looking at separate contexts of sitting. Further, the results highlighted the importance of longitudinal research in order to reveal which changes in particular variables predicted changes in context-specific sitting time. Variables at the social-cognitive level were most frequently related to context-specific sitting.