Alignment Among Patient, Caregiver, and Health Care Provider Perspectives on Hemodialysis Vascular Access Decision-Making: A Qualitative Study.

Background: Updates to the Kidney Disease Outcomes Quality Initiative Clinical Practice Guideline for Vascular Access emphasize the "right access, in the right patient, at the right time, for the right reasons." Although this implies a collaborative approach, little is known about how patients, their caregivers, and health care providers engage in vascular access (VA) decision-making. Objective: To explore how the perspectives of patients receiving hemodialysis, their caregivers, and hemodialysis care team align and diverge in relation to VA selection. Design: Qualitative descriptive study. Setting: Five outpatient hemodialysis centers in Calgary, Alberta. Participants: Our purposive sample included 19 patients receiving maintenance hemodialysis, 2 caregivers, and 21 health care providers (7 hemodialysis nurses, 6 VA nurses, and 8 nephrologists). Methods: We conducted semi-structured interviews with consenting participants. Using an inductive thematic analysis approach, we coded transcripts in duplicate and characterized themes addressing our research objective. Results: While participants across roles shared some perspectives related to VA decision-making, we identified areas where views diverged. Areas of alignment included (1) optimizing patient preparedness-acknowledging decisional readiness and timing, and (2) value placed on trusting relationships with the kidney care team-respecting decisional autonomy with guidance. Perspectives diverged in the following aspects: (1) differing VA priorities and preferences-patients' emphasis on minimizing disruptions to normalcy contrasted with providers' preferences for fistulas and optimizing biomedical parameters of dialysis; (2) influence of personal and peer experience-patients preferred pragmatic, experiential knowledge, whereas providers emphasized informational credibility; and (3) endpoints for VA review-reassessment of VA decisions was prompted by access dissatisfaction for patients and a medical imperative to achieve a functioning access for health care providers. Limitations: Participation was limited to individuals comfortable communicating in English and from urban, in-center hemodialysis units. Few informal caregivers of people receiving hemodialysis and younger patients participated in this study. Conclusions: Although patients, caregivers, and healthcare providers share perspectives on important aspects of VA decisions, conflicting priorities and preferences may impact the decisional outcome. Findings highlight opportunities to bridge knowledge and readiness gaps and integrate shared decision-making in the VA selection process.

Contexte: Les mises à jour des lignes directrices de pratiques cliniques en matière d'accès vasculaire de la KDOQI (Kidney Disease Outcomes Quality Initiative) insistent sur la création « du bon accès, à la bonne personne, au bon moment et pour les bonnes raisons ¼. Ces recommandations sous-entendent une approche collaborative, mais la façon dont les patients, leurs soignants et les prestataires de soins de santé participent à la prise de décision sur l'accès vasculaire (AV) demeure mal connue. Objectif: Explorer les accords et les divergences dans les points de vue des patients sous hémodialyse, leurs soignants et leur équipe de soins relativement à la sélection de l'AV. Conception: Étude qualitative et descriptive. Cadre: Cinq centres d'hémodialyse ambulatoire à Calgary (Alberta). Sujets: Notre échantillon choisi à dessein était composé de 19 patients sous hémodialyse d'entretien, 2 soignants et 21 prestataires de soins de santé (7 infirmières en hémodialyse, 6 infirmières en AV et 8 néphrologues). Méthodologie: Nous avons mené des entrevues semi-structurées auprès des participants consentants. Une approche d'analyse thématique inductive a été employée pour coder les transcriptions en double et caractériser les thèmes répondant à l'objectif de recherche. Résultats: Certains points de vue sur la prise de décision en matière d'AV étaient partagés par tous les participants, mais nous avons identifié quelques domaines de divergence. Les participants s'entendaient sur : 1) l'optimisation de la préparation des patients ­ reconnaître l'état de préparation et le moment de prendre la décision; et 2) la valeur accordée aux relations de confiance avec l'équipe de soins rénaux ­ respecter l'autonomie décisionnelle après conseils. Les points de vue divergeaient sur : 1) les priorités et préférences à l'égard de l'AV ­ l'accent mis par les patients sur la minimisation des perturbations de la vie courante contrastait avec les préférences des prestataires de soins pour les fistules et l'optimisation des paramètres biomédicaux de la dialyse; 2) l'influence de l'expérience personnelle et des pairs ­ les patients préféraient des connaissances pragmatiques et expérientielles, tandis que les prestataires de soins mettaient l'accent sur la crédibilité de l'information; et 3) les critères d'évaluation de l'AV ­ la réévaluation du choix de l'AV est motivée par l'insatisfaction des patients à l'égard de l'accès et, du côté des prestataires de soins, par l'impératif médical de parvenir à un accès fonctionnel. Limites: Seules les personnes fréquentant une unité d'hémodialyse en centre urbain et à l'aise de communiquer en anglais ont pu participer. Les participants comptaient peu de patients plus jeunes et de soignants informels de personnes sous hémodialyse. Conclusion: Bien que les patients, les soignants et les prestataires de soins de santé s'entendent sur certains aspects importants de la décision concernant l'AV, celle-ci pourrait être influencée par des priorités et préférences contradictoires. Nos résultats mettent en évidence des occasions d'intégrer la prise de décision partagée dans le processus de sélection d'un AV et de combler les lacunes dans les connaissances et la préparation des patients.

Models of Arthritis Care: A Systems-level Evaluation of Acceptability as a Dimension of Quality of Care.

OBJECTIVE: To describe a systems-level baseline evaluation of central intake (CI) and triage systems in arthritis care within Alberta, Canada. The specific objectives were to (1) describe a process for systems evaluation for the provision of arthritis care; (2) report the findings of the evaluation for different clinical sites that provide arthritis care; and (3) identify opportunities for improving appropriate and timely access based on the findings of the evaluation. METHODS: The study used a convergent mixed methods design. Surveys and semistructured interviews were the main data collection methods. Participants were recruited through 2 rheumatology clinics and 1 hip and knee clinic providing CI and triage, and included patients, referring physicians, specialists, and clinic staff who experienced CI processes. RESULTS: A total of 237 surveys were completed by patients (n = 169), referring physicians (n = 50), and specialists (n = 18). Interviews (n = 25) with care providers and patients provided insights to the survey data. Over 95% of referring physicians agreed that the current process of CI was satisfactory. Referring physicians and specialists reported issues with the referral process and perceived support in care for wait-listed patients. Patients reported positive experiences with access and navigation of arthritis care services but expressed concerns around communication and receiving minimal support for self-management of their arthritis before and after receiving specialist care. CONCLUSION: This baseline evaluation of CI and triage for arthritis care indicates satisfaction with the service, but areas that require further consideration are referral completion, timely waiting lists, and further supporting patients to self-manage their arthritis.

Co-design of a patient experience survey for arthritis central intake: an example of meaningful patient engagement in healthcare design.

BACKGROUND: To describe the process of patient engagement to co-design a patient experience survey for people with arthritis referred to central intake. METHODS: We used a participatory design to engage with patients to co-design a patient experience survey that comprised three connected phases: 1) Identifying the needs of patients with arthritis, 2) Developing a set of key performance indicators, and 3) Determining the survey items for the patient experience survey. RESULTS: Patient recommendations for high quality healthcare care means support to manage arthritis, to live a meaningful life by providing the right knowledge, professional support, and professional relationship. The concept of integrated care was a core requirement from the patients' perspective for the delivery of high quality arthritis care. Patients experience with care was ranked in the top 10 of 28 Key Performance Indicators for the evaluation of central intake, with 95% of stakeholders rating it as 9/10 for importance. A stakeholder team, including Patient and Community Engagement Researchers (PaCER), mapped and rated 41 survey items from four validated surveys. The final patient experience survey had 23 items. CONCLUSION: The process of patient engagement to co-design a patient experience survey, for people with arthritis, identified aspects of care that had not been previously recognized. The linear organization of frameworks used to report patient engagement in research does not always capture the complexity of reality. Additional resources of cost, time and expertise for patient engagement in co-design activity are recognized and should be included, where possible, to ensure high quality data is captured.

A Systematic Review of the Quality of Life for Families Supporting a Child Consuming the Ketogenic Diet for Seizure Reduction.

The ketogenic diet (KD) is a nonpharmacologic treatment to reduce seizures with moderate to high success in pediatric patients with intractable epilepsy. Initiated in hospital, parents continue the treatment at home ensuring the ratio of high fat to low carbohydrate/protein is maintained to achieve metabolic ketosis. We conducted a systematic review to examine the quality of life (QoL) for families with a child using the KD for the reduction in epileptic seizures. A systematic review of the literature was conducted from 2007-2014 using key terms and combinations of: "epilepsy," "ketogenic diet," "children," "family," and "quality of life." We accessed CINAHL, Medline, PubMed, and PsycINFO. After removing duplicates, we screened 598 papers by title and abstract. Articles comparing alternate diets such as the Atkins diet to the KD, or those focusing on the KD and societal costs, were excluded. Eighteen articles remained, including 7 intervention studies (randomized controlled trial and quasiexperimental), 7 descriptive studies (retrospective), 2 observational studies, and 2 case studies. Most participants were diagnosed with epilepsy at the age of 5 y, and had a trial of antiepileptic drugs (AEDs) and had been using the KD after discharge from the hospital. QoL was infrequently reported as a primary variable and was defined in a variety of ways. We found recurring themes that could affect QoL: efficacy of seizure reduction, nutritional status, child growth and development, and child and family psychosocial impact. The dominant psychological factor was the need for counseling for parents and clear expectations on expected outcomes. Nonadherence and dropout rates were frequent, but unfortunately the reasons and timing were not well documented, and some of these could be associated with QoL. The success of the KD in seizure reduction addressed a primary parental concern. Further research should address KD adherence and dropout rates, and investigate factors of quality of life.

The suffering of chronic pain patients on a wait list: Are they amenable to narrative therapy?

Background: Chronic pain affects one in five Canadians. People with chronic pain frequently experience loss in their lives related to work, relationships, and their independence. They may be referred to a chronic pain program, which aims to strengthen coping through medical intervention and self-management skills. Data suggest that, even when individuals begin their pain program, many feel overwhelmed and do not continue. Aims: The aim of this study was to conduct a needs assessment to explore the acceptability and feasibility of developing a psychosocial intervention, narrative therapy (NT), to address loss for chronic pain patients on the wait list of a chronic pain program. Methods: Two focus groups were conducted with ten patients who had experienced being on a wait list for a provincial chronic pain management program (CPMP). Transcribed interviews were subjected to thematic and interpretive analysis. Results: Two major themes emerged from the analysis: loss of identity and sharing a story of chronic pain. All patients were enthusiastic toward an NT intervention, although individual preferences differed regarding mode of delivery. Conclusions: Loss is a significant part of the chronic pain experience. NT seems to be an acceptable intervention to address loss for patients on the wait list for a chronic pain program.

Contexte: La douleur chronique affecte un Canadien sur cinq. Les personnes qui souffrent de douleur chronique vivent souvent des pertes associées à leur travail, leurs relations et leur indépendance. Elles peuvent être référées à un programme de douleur chronique visant à renforcer leurs mécanismes d'adaptation par le biais d'une intervention médicale et d'habiletés d'autogestion. Les données suggèrent que même lorsqu'un individu commence un programme de gestion de la douleur, nombreux sont ceux qui se sentent accablés et qui l'abandonnent.Objectifs: L'objetif de cette étude était d'évaluer les besoins afin d'explorer l'acceptabilité et la faisabilité d'une intervention psychosociale, la thérapie narrative, abordant la thématique des pertes chez les patients souffrant de douleur chronique inscrits sur la liste d'attente d'un programme de douleur chronique.Méthodes: Deux groupes de discussion réunissant 10 patients qui avaient été inscrits sur la liste d'attente d'un programme provincial de gestion de la douleur chronique ont été menés. Les entrevues transcrites ont été soumises à une analyse thématique et interprétative.Résultats: L'analyse a permis de dégager deux thèmes principaux: la perte d'identité et partager une histoire commune de douleur chronique. La thérapie narrative a suscité l'enthousiasme de tous les participants, bien que leurs préférences différaient en ce qui concerne les modalités de mise en œuvre de l'intervention.Conclusions: Les pertes sont un aspect important de l'expérience de la douleur chronique. Pour les patients inscrits sur la liste d'attente d'un programme de douleur chronique, la thérapie narrative semble être une intervention acceptable pour aborder cette question.

An Integrative Review of the Literature on Pain Management Barriers: Implications for the Canadian Clinical Context.

Despite decades of pain research, substandard pain management continues to be distressingly prevalent across health-care settings. This integrative literature review analyzes and synthesizes barriers to effective pain management and identifies areas for future investigation in a Canadian context. Three sets of key barriers were identified through thematic analysis of 24 original research studies published in the period 2003-13: patient, professional, and organizational. These barriers rarely occurred in isolation, with many studies reporting examples in all three categories. This suggests that interventions need to reflect the multifactorial nature of pain management. Reframing pain education as a public health initiative could lead to sustainable improvement, as could the strengthening of partnerships between patients and health-care providers. There are tremendous opportunities for the advanced practice nurse to take a lead in pain management. The delivery of high-quality care that encompasses effective pain management strategies must be a priority for nursing. Research approaches, such as pragmatic mixed methods, that offer contextual understanding of how pain is managed are suggested.

Bien que la question de la douleur ait fait l'objet de recherches depuis plusieurs décennies, la douleur est encore très mal gérée dans la plupart des milieux de la santé. Le présent examen par intégration de la littérature analyse et fait la synthèse des obstacles qui empêchent une gestion efficace de la douleur et identifie des domaines qui devront faire l'objet d'études en contexte canadien. Trois types d'obstacles ont été identifiés à l'aide d'une analyse thématique de 24 études originales publiées entre 2003 et 2013: ceux qui relèvent du patient, ceux d'ordre professionnel et ceux de nature organisationnelle. Ces obstacles se manifestent rarement de façon isolée et nombre d'études offrent des exemples des trois types, ce qui suggère que les interventions doivent refléter la nature multifactorielle de la gestion de la douleur. Le recadrage de l'éducation en matière de douleur dans le cadre d'une initiative de santé publique pourrait mener à des améliorations durables, tout comme le renforcement des partenariats entre les patients et les professionnels de la santé. Les occasions qui s'offrent aux infirmières en pratique avancée de jouer un rôle de premier plan en matière de gestion de la douleur sont immenses. La prestation de soins de grande qualité qui s'appuient sur des stratégies de gestion de la douleur efficaces doit être une priorité en soins infirmiers. Les auteures suggèrent l'adoption d'approches de recherche offrant une compréhension contextuelle de la gestion de la douleur, telles les méthodes mixtes pragmatiques.