A self-directed co-creation process for developing a care pathway for patients on oral anticancer therapy: A qualitative process evaluation.

PURPOSE: To provide in-depth insight in stakeholders' experiences with the self-directed co-creation of a care pathway for patients treated with oral anticancer drugs, and to identify influencing factors for the success of the co-creation process that are persistent throughout the prior pilot phase and the scale-up phase. METHODS: This qualitative process evaluation was performed in 11 Belgian oncology departments participating in a scale-up project. Semi-structured interviews with local coordinators (n = 13) and members of the project teams (n = 19), responsible for the co-creation of the care pathway, were conducted. Data were thematically analyzed. RESULTS: Despite the external support (including group-level coaching and the use of well-defined supportive tools) to promote self-directedness, the co-creation process was perceived burdensome. Three influencing factors were persistent throughout the pilot and scale-up phase: a) shared leadership among the coordinator, physician and hospital management, b) an intrinsically motivated team driven by additional extrinsic factors, and c) a balance between external support and self-directedness. CONCLUSION: This study shows that the self-directed co-creation of a care pathway is feasible on the condition that important prerequisites are met, including shared leadership and team motivation. More concrete tools, such as a model care pathway, seem needed to increase feasibility of the self-directed co-creation of the care pathway. Yet, these tools should allow tailoring to the specific hospital context. The findings of this study can be useful for further scale-up to other oncology centers, but can also be extrapolated to other healthcare settings.

Methods to elicit and evaluate the attainment of patient goals in older adults: A scoping review.

OBJECTIVE: This scoping review aimed to identify patient goal elicitation and evaluation methods for older adults, and to investigate which methods can be used in medication optimization interventions for nursing home residents (NHRs). METHODS: The Arksey and O'Malley framework guided the review. A search was launched in PubMed, Embase, CINAHL, and Web of Science. Reference selection and data extraction were performed by three independent reviewers, followed by team discussions to solve discrepancies. Inductive thematic analysis was applied to synthesize the data. Included papers were reconsidered to identify methods for medication optimization interventions for NHRs. RESULTS: Ninety-six references, encompassing 38 elicitation and 12 evaluation methods, were included. Elicitation methods differed in structure, content, and patient involvement levels. Qualitative and quantitative methods were found to assess goal attainment. Five elicitation and three evaluation methods were developed for NHRs, but none of these contained a medication-related assessment. CONCLUSION: A variety of goal elicitation and evaluation methods for older adults was found, but none for medication optimization interventions in NHRs. PRACTICE IMPLICATIONS: A holistic approach seems important to integrate patient goals into medication optimization interventions, not limiting goal elicitation to a medication-related assessment. Also, the choice of assessor seems important to obtain patient goals.

Nurse-led self-management support after organ transplantation-protocol of a multicentre, stepped-wedge randomized controlled trial.

BACKGROUND: Recipients of an organ transplantation face a number of challenges and often need to change their health behaviour. Good self-management skills are essential for optimal clinical outcomes. However, few interventions are available to support post-transplant self-management. To fill this gap, we developed a self-management support intervention offered by nurse practitioners. The primary aim of the study is to implement and test the effectiveness of the ZENN intervention in promoting self-management skills among heart, kidney liver and lung transplant recipients in comparison to standard care. The secondary aim is to assess the self-management support skills of nurse practitioners who will deliver the intervention. METHODS: This multi-centre stepped-wedge randomized controlled trial will take place from September 2020 until May 2023. All departments will commence with inclusion of patients in the control period. Each department will be randomly assigned to a start date (step in the wedge) to commence the experimental period. Patients in the control period will receive standard care and will be asked to complete questionnaires at baseline (T0), 6 months (T1) and 12 months (T2), to assess self-management, self-regulation, quality of life and adherence. During the experimental period, patients will receive standard care plus the ZENN intervention and receive the same set of questionnaires as participants in the control period. Nurse practitioners will complete a baseline and follow-up questionnaire to assess differences in self-management support skills. Video recordings of outpatient clinic consultations during the control and experimental periods will determine the differences in nurses' needs-thwarting and needs-supporting skills between the control and experimental period. DISCUSSION: The ZENN intervention could be a useful approach to support patients' self-management skills after organ transplantation and thus promote clinical outcomes as well as avoid adverse events. TRIAL REGISTRATION: Dutch Trial Register NL8469 . Registered on March 19, 2020.

Development of a pre- and postoperative physical activity promotion program integrated in the electronic health system of patients with bladder cancer (The POPEYE study): An intervention mapping approach.

INTRODUCTION: Uptake of sufficient physical activity before and after radical cystectomy is important to improve physical and psychosocial outcomes in bladder cancer (BC) patients. METHODS: In this paper, we describe the development of an evidence-based and theory-informed intervention, guided by the steps of the Intervention Mapping approach, to promote physical activity before and after radical cystectomy in patients with BC. RESULTS: The intervention is a home-based physical activity program. The preoperative timeframe of the intervention is 4 or 12 weeks, depending on administration of neoadjuvant chemotherapy. Postoperatively, the intervention will last for 12 weeks. The intervention consists of a digital oncological platform (DOP), several consultations with healthcare professionals, personal booklet and follow-up phone calls. DOP includes information, diaries, visual representation of progress, mailbox, videos of peers and treating physician explaining the benefits of physical activity, photo material of exercises and a walking program with an activity tracker. Individual goals will be set and will be self-monitored by the patient through DOP. Patients will receive alerts and regular feedback. CONCLUSIONS: Intervention Mapping ensures transparency of all intervention components and offers a useful approach for the development of behaviour change interventions for cancer patients and for translation of theories into practice.

Living as a Cancer Survivor: A Qualitative Study on the Experiences of Belgian Adolescents and Young Adults (AYAs) after Childhood Cancer.

PURPOSE: Insight was sought in how a childhood cancer experience plays a role in daily life of adolescents and young adults (AYA) survivors. DESIGN AND METHODS: A qualitative research in which semi-structured interviews were held with 21 AYA survivors of childhood cancer between the ages of 14 and 25. The AYA survivors were recruited from two pediatric oncology departments of two university hospitals in Belgium. RESULTS: The current situation and behavior of AYA-survivors who have been treated for childhood cancer are covered in 5 categories: The Feeling of Being Different while Aiming for Normalcy in Relationships, Living with Existential Uncertainty, The Conscious Protection of Health, The Attachment to the Parent(s) with Whom the Cancer Experience was Shared, and The Desire to Be Meaningful to Others. CONCLUSIONS: The AYA survivors did not feel that their cancer experience dominated their current daily life, yet, the cancer experience had an important impact on their functioning. PRACTICE IMPLICATIONS: The findings of the study can be used to optimize holistic psychosocial care of AYA survivors. By starting from the key elements in their current functioning, health care professionals can tailor their support to the way in which AYA survivors have integrated their cancer experience into their everyday lives.

Leadership in nursing and midwifery: Activities and associated competencies of advanced practice nurses and midwives.

AIM: To explore the practice profile and competencies of advanced practice nurses (APNs) and midwives (AMPs), and factors associated with task non-execution. BACKGROUND: Advanced practitioner roles are increasingly implemented internationally. Unofficial role introduction led to confusion regarding task performance. Studies examining associations between APNs'/AMPs' task performance and competency levels, and factors associated with task non-execution are lacking. METHOD: A cross-sectional study among APNs/AMPs in Flanders (Belgium) explored tasks and competencies in seven domains: clinical/professional leadership, change management/innovation, research, clinical expertise/guidance/coaching, consultation/consultancy, multidisciplinary cooperation/care coordination and ethical decision-making. Task performance and competency level frequencies were calculated. Regression analysis identified factors associated with task non-execution on domain/item level. RESULTS: Participants (n = 63) executed tasks in all domains. Task non-execution related to research and clinical expertise was associated with work setting; task non-execution regarding care coordination and ethical decision-making was associated with competency perception. Several tasks were performed by few APNs/AMPs despite many feeling competent. Five of ten tasks performed by fewest participants belonged to the leadership domain. CONCLUSION AND IMPLICATIONS FOR NURSING AND MIDWIFERY MANAGEMENT: Supervisors could play an important part in APNs'/AMPs' role development, especially regarding leadership and tasks executed by few participants. Future studies should provide in-depth knowledge on task non-execution.

Systematic screening and assessment of psychosocial well-being and care needs of people with cancer.

BACKGROUND: Receiving a diagnosis of cancer and the subsequent related treatments can have a significant impact on an individual's physical and psychosocial well-being. To ensure that cancer care addresses all aspects of well-being, systematic screening for distress and supportive care needs is recommended. Appropriate screening could help support the integration of psychosocial approaches in daily routines in order to achieve holistic cancer care and ensure that the specific care needs of people with cancer are met and that the organisation of such care is optimised. OBJECTIVES: To examine the effectiveness and safety of screening of psychosocial well-being and care needs of people with cancer. To explore the intervention characteristics that contribute to the effectiveness of these screening interventions. SEARCH METHODS: We searched five electronic databases in January 2018: the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, Embase, PsycINFO, and CINAHL. We also searched five trial registers and screened the contents of relevant journals, citations, and references to find published and unpublished trials. SELECTION CRITERIA: We included randomised controlled trials (RCTs) and non-randomised controlled trials (NRCTs) that studied the effect of screening interventions addressing the psychosocial well-being and care needs of people with cancer compared to usual care. These screening interventions could involve self-reporting of people with a patient-reported outcome measures (PROMs) or a semi-structured interview with a screening interventionist, and comprise a solitary screening intervention or screening with guided actions. We excluded studies that evaluated screening integrated as an element in more complex interventions (e.g. therapy, coaching, full care pathways, or care programmes). DATA COLLECTION AND ANALYSIS: Two review authors independently extracted the data and assessed methodological quality for each included study using the Cochrane tool for RCTs and the Risk Of Bias In Non-randomised Studies - of Interventions (ROBINS-I) tool for NRCTs. Due to the high level of heterogeneity in the included studies, only three were included in meta-analysis. Results of the remaining 23 studies were analysed narratively. MAIN RESULTS: We included 26 studies (18 RCTs and 8 NRCTs) with sample sizes of 41 to 1012 participants, involving a total of 7654 adults with cancer. Two studies included only men or women; all other studies included both sexes. For most studies people with breast, lung, head and neck, colorectal, prostate cancer, or several of these diagnoses were included; some studies included people with a broader range of cancer diagnosis. Ten studies focused on a solitary screening intervention, while the remaining 16 studies evaluated a screening intervention combined with guided actions. A broad range of intervention instruments was used, and were described by study authors as a screening of health-related quality of life (HRQoL), distress screening, needs assessment, or assessment of biopsychosocial symptoms or overall well-being. In 13 studies, the screening was a self-reported questionnaire, while in the remaining 13 studies an interventionist conducted the screening by interview or paper-pencil assessment. The interventional screenings in the studies were applied 1 to 12 times, without follow-up or from 4 weeks to 18 months after the first interventional screening. We assessed risk of bias as high for eight RCTs, low for five RCTs, and unclear for the five remaining RCTs. There were further concerns about the NRCTs (1 = critical risk study; 6 = serious risk studies; 1 = risk unclear).Due to considerable heterogeneity in several intervention and study characteristics, we have reported the results narratively for the majority of the evidence.In the narrative synthesis of all included studies, we found very low-certainty evidence for the effect of screening on HRQoL (20 studies). Of these studies, eight found beneficial effects of screening for several subdomains of HRQoL, and 10 found no effects of screening. One study found adverse effects, and the last study did not report quantitative results. We found very low-certainty evidence for the effect of screening on distress (16 studies). Of these studies, two found beneficial effects of screening, and 14 found no effects of screening. We judged the overall certainty of the evidence for the effect of screening on HRQoL to be very low. We found very low-certainty evidence for the effect of screening on care needs (seven studies). Of these studies, three found beneficial effects of screening for several subdomains of care needs, and two found no effects of screening. One study found adverse effects, and the last study did not report quantitative results. We judged the overall level of evidence for the effect of screening on HRQoL to be very low. None of the studies specifically evaluated or reported adverse effects of screening. However, three studies reported unfavourable effects of screening, including lower QoL, more unmet needs, and lower satisfaction.Three studies could be included in a meta-analysis. The meta-analysis revealed no beneficial effect of the screening intervention on people with cancer HRQoL (mean difference (MD) 1.65, 95% confidence interval (CI) -4.83 to 8.12, 2 RCTs, 6 months follow-up); distress (MD 0.0, 95% CI -0.36 to 0.36, 1 RCT, 3 months follow-up); or care needs (MD 2.32, 95% CI -7.49 to 12.14, 2 RCTs, 3 months follow-up). However, these studies all evaluated one specific screening intervention (CONNECT) in people with colorectal cancer.In the studies where some effects could be identified, no recurring relationships were found between intervention characteristics and the effectiveness of screening interventions. AUTHORS' CONCLUSIONS: We found low-certainty evidence that does not support the effectiveness of screening of psychosocial well-being and care needs in people with cancer. Studies were heterogeneous in population, intervention, and outcome assessment.The results of this review suggest a need for more uniformity in outcomes and reporting; for the use of intervention description guidelines; for further improvement of methodological certainty in studies and for combining subjective patient-reported outcomes with objective outcomes.

Advanced midwifery practice: An evolutionary concept analysis.

AIM: the concept of 'advanced midwifery practice' is explored to a limited extent in the international literature. However, a clear conception of advanced midwifery practice is vital to advance the discipline and to achieve both internal and external legitimacy. This concept analysis aims to clarify advanced midwifery practice and identify its components. METHODS: a review of the literature was executed using Rodgers' evolutionary method of concept analysis to analyze the attributes, references, related terms, antecedents and consequences of advanced midwifery practice. RESULTS: an international consensus definition of advanced midwifery practice is currently lacking. Four major attributes of advanced midwife practitioners (AMPs) are identified: autonomy in practice, leadership, expertise, and research skills. A consensus was found on the need of preparation at master's level for AMPs. Such midwives have a broad and internationally varied scope of practice, fulfilling different roles such as clinicians, clinical and professional leaders, educators, consultants, managers, change agents, researchers, and auditors. Evidence illustrating the important part AMPs play on a clinical and strategic level is mounting. KEY CONCLUSIONS: the findings of this concept analysis support a wide variety in the emergence, titles, roles, and scope of practice of AMPs. Research on clinical and strategic outcomes of care provided by AMPs supports further implementation of these roles. As the indistinctness of AMPs' titles and roles is one of the barriers for implementation, a clear conceptualization of advanced midwifery practice seems essential for successful implementation. IMPLICATIONS FOR PRACTICE: an international debate and consensus on the defining elements of advanced midwifery practice could enhance the further development of midwifery as a profession and is a prerequisite for its successful implementation. Due to rising numbers of AMPs, extension of practice and elevated quality requirements in healthcare, more outcomes research exclusively evaluating the contribution of AMPs to healthcare becomes possible and desirable.

Preconception-related needs of reproductive-aged women.

OBJECTIVE: to assess women׳s interest in preconception care, their organisational preferences, and their preconception-related information and support needs. DESIGN: cross-sectional study design. SETTING: participants were recruited online through social media and discussion forums for issues relating to (in)fertility, pregnancy and parenting, and at the Women׳s Clinic of Ghent University Hospital. PARTICIPANTS: 242 reproductive-aged women with a desire to have (more) children. FINDINGS: the majority of women (75%) wanted to receive preconception care in the future. Gynaecologists (93%) were the preferred source of preconception care, followed by midwives (73%) and general practitioners (63%). Most women wanted information about lifestyle, environmental exposures, working conditions and medical issues. Information needs were higher among women with (history of) mental illness [odds ratio (OR) 3.50, 95% confidence interval (CI) 1.08-11.36], (history of) eye and otolaryngological problems (OR 2.22, 95% CI 0.95-5.21) and overweight (OR 2.22, 95% CI 1.01-4.93). A few women indicated that they needed preconception-related support. Overweight women reported greater need for lifestyle-related support compared with women of healthy weight (p=0.001). KEY CONCLUSIONS: reproductive-aged women are interested in preconception care, and would prefer to receive this care directly from a professional caregiver. Most women had high preconception-related information needs and lower support needs. IMPLICATIONS FOR PRACTICE: although women reported that they would prefer to receive preconception care from gynaecologists, the results indicate that midwives can also play an important role in the provision of preconception care. They would need further training to improve their knowledge, skills and awareness regarding preconception care.

A review of why patients with leg ulcers do not adhere to treatment.

AIM: To provide an overview of what is known thus far about reasons for and determinants of non-adherent behaviour. BACKGROUND: Compression, leg exercises and leg elevation are regarded as essential components in leg ulcer treatment and in the prevention of ulcer recurrence. Non-adherence to leg ulcer regimen is a major problem. Reasons for non-adherence are not fully understood. DESIGN: Systematic review. METHOD: Medline, CINAHL and the Cochrane database were explored from 1995 - December 2007. Reference lists of retrieved articles were searched. Studies were eligible if they included patients with venous or mixed leg ulcers, reported reasons or determinants of non-adherence and were published in English, Dutch, French or German. Thirty-one studies were included. RESULTS: Non-adherence is a multidimensional problem. Pain, discomfort and lack of valid lifestyle advice by healthcare professionals were primary reasons for non-adherence from patient's perspective. CONCLUSIONS: Healthcare professionals mainly focus on patient-related factors such as poor motivation, lack of knowledge and understanding and unwillingness. The beliefs that compression was unnecessary, uncomfortable, worthwhile and prevented recurrence significantly determined (non-)adherence. RELEVANCE TO NURSING AND NURSING SCIENCE: Interventions to promote adherence will require a multifaceted approach and a holistic comprehensive assessment. Therapeutic non-judgemental relationships are essential to enhance patient adherence. Effective pain management is recommended and social support by family or significant others could be encouraged. Healthcare professionals should give clear, unambiguous and tailored information. Research can best focus on the factors and processes affecting patient adherence to leg ulcer treatment. Comprehensive adherence-enhancing strategies could be developed and their effectiveness should be tested.