Predictors of caregiver burden across the home-based palliative care trajectory in Ontario, Canada

Family caregivers of patients enrolled in home-based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non-modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers (n = 327) of patients with malignant neoplasm were recruited from two dedicated home-based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi-weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home-care agency databases. Information collected comprised patient and caregiver demographics, utilisation of privately and publicly financed resources, patient clinical status and caregiver burden. The average age of the caregivers was 59.0 years (SD: 13.2), and almost 70% were female. Caregiver burden increased over time in a non-linear fashion from study admission to patient death. Increased monthly unpaid care-giving time costs, monthly public personal support worker costs, emergency department visits and low patient functional status were associated with higher caregiver burden. Greater use of hospice care was associated with lower burden. Female caregivers tended to report more burden compared to men as death approached, and burden was higher when patients were male. Low patient functional status was the strongest predictor of burden. Understanding the influence of modifiable and non-modifiable factors on the experience of burden over the palliative trajectory is essential for the development and targeting of programmes and policies to support family caregivers and reduce burden. Supporting caregivers can have benefits such as improved caregiver health outcomes, and enhancing their ability to meet care-giving demands, thereby potentially allowing for longer patient care in the home setting.

Push or pull? : The relationship between quality of care and use of complementary and alternative medicine among patients with lung cancer in Sweden

Little is known about relationships between quality of care (QoC) and use of complementary and alternative medicine (CAM) among patients with lung cancer (LC). Purpose: This study examines CAM-use among patients with LC in Sweden, associations between QoC and CAM-use among these patients, and reported aspects of LC-care perceived as particularly positive and negative by patients, as well as suggestions for improving QoC. Methods: Survey data from 94 patient members of the Swedish LC patient organization about CAM-use and QoC as measured by the instrument “Quality from the patient’s perspective” were analyzed. Results: Fifty (53%) LC-patients used CAM, with 40 of the CAM-users reporting that CAM helped them. The most common CAMs used were dietary supplements and natural remedies, followed by prayer. Significantly more patients reported using prayer and meditation for cure than was the case for other types of CAM used. Less than half the CAM-users reported having spoken with staff from the biomedical health care system about their CAM-use. Patients provided numerous suggestions for improving LC-care in a variety of areas, aiming at a more effective and cohesive care trajectory. No differences in QoC were found between CAM-users and non-CAM-users, but differences in CAM-use i.e. type of CAM, reasons for using CAM, and CAM-provider consulted could be associated with different experiences of care. Conclusions: It is important to recognize that CAM-users are not a homogeneous group but might seek different types of CAMs and CAM-providers in different situations depending on experiences of care.

Benefits and resource implications of family meetings for hospitalized palliative care patients: research protocol.

BACKGROUND:
Palliative care focuses on supporting patients diagnosed with advanced, incurable disease; it is 'family centered', with the patient and their family (the unit of care) being core to all its endeavours. However, approximately 30-50% of carers experience psychological distress which is typically under recognised and consequently not addressed. Family meetings (FM) are recommended as a means whereby health professionals, together with family carers and patients discuss psychosocial issues and plan care; however there is minimal empirical research to determine the net effect of these meetings and the resources required to implement them systematically. The aims of this study were to evaluate: (1) if family carers of hospitalised patients with advanced disease (referred to a specialist palliative care in-patient setting or palliative care consultancy service) who receive a FM report significantly lower psychological distress (primary outcome), fewer unmet needs, increased quality of life and feel more prepared for the caregiving role; (2) if patients who receive the FM experience appropriate quality of end-of-life care, as demonstrated by fewer hospital admissions, fewer emergency department presentations, fewer intensive care unit hours, less chemotherapy treatment (in last 30 days of life), and higher likelihood of death in the place of their choice and access to supportive care services; (3) the optimal time point to deliver FM and; (4) to determine the cost-benefit and resource implications of implementing FM meetings into routine practice.
METHODS:
Cluster type trial design with two way randomization for aims 1-3 and health economic modeling and qualitative interviews with health for professionals for aim 4.
DISCUSSION:
The research will determine whether FMs have positive practical and psychological impacts on the family, impacts on health service usage, and financial benefits to the health care sector. This study will also provide clear guidance on appropriate timing in the disease/care trajectory to provide a family meeting.

Modèle de l’engagement et de l’abandon de traitement de l’adolescent avec trouble de personnalité limite

Plus de la moitié des adolescents suicidaires dont une large proportion présente un trouble de personnalité limite (TPL) abandonnent leur traitement. Les conséquences de leur défection sont préoccupantes considérant la récurrence de leurs conduites suicidaires et le fait que cette pathologie augmente le risque d’une évolution défavorable à l’âge adulte. À partir d’une méthode de théorisation ancrée constructiviste, cette étude visait à comprendre les processus associés à l’instabilité du mode de consultation des adolescents avec TPL. Elle a permis de spécifier les vulnérabilités à l’abandon des adolescents avec TPL et celles de leurs parents et mis au jour que l’atténuation des problèmes d’accessibilité, la préparation au traitement, l’adaptation des soins aux particularités du TPL et finalement la prise en compte de la disposition à traiter des soignants constituent des réponses déterminantes pour leur engagement. Les processus de désengagement ont également été spécifiés. Des perceptions négatives à l’égard du traitement, du soignant ou du fait d’être en traitement génèrent une activation émotionnelle. Celle-ci induit ensuite des attitudes contre-productives qui évoluent vers des comportements francs de désengagement. Dans ce contexte, des réponses du dispositif de soins telles une régulation insuffisante de l’engagement, des impairs thérapeutiques et des demandes paradoxales précipitent l’abandon de traitement. Finalement, les processus impliqués dans l’abandon de traitement ont été formalisés dans le Modèle de l’engagement et de l’abandon de traitement des adolescents avec TPL. Celui-ci illustre que des processus distincts caractériseraient les abandons précoces et les abandons tardifs des adolescents avec TPL. L’abandon précoce résulterait de l’échec du dispositif de soins à profiter de l’impulsion de la demande d’aide pour engager l’adolescent et le parent lors de ce premier moment critique de sa trajectoire de soins. En contrepartie, les abandons tardifs traduiraient les défaillances du dispositif de soins à adopter des mesures correctives pour les maintenir en traitement lors d’un deuxième moment critique marqué par leur désengagement. Les taux d’abandon de traitement de ces jeunes pourraient être diminués par un dispositif de soins qui reconnaît les périls inhérents au traitement de cette clientèle, se montre proactif pour résoudre les problèmes de désengagement, intègre des mécanismes de soutien aux soignants et favorise une pratique réflexive.

La description de la pratique interprofessionnelle centrée sur le patient au cours de la trajectoire de soins en oncologie

Les orientations ministérielles du Québec encouragent une pratique interprofessionnelle centrée sur le patient (ICP), au cours de la trajectoire de soins, pour soutenir les patients diagnostiqués d’un cancer. Cette pratique assure une meilleure communication entre les professionnels et la sécurité des patients, et améliore les soins et l'accès aux services (Santé Canada, 2010). Cependant, les études rapportent généralement les perceptions des professionnels en regard des soins et des services et informent sur les facteurs organisationnels, procéduraux et relationnels liés à cette pratique. Considérant l’importance de celle-ci, il semble nécessaire de la documenter selon les perceptions de patients, de proches et de professionnels dans un contexte réel de soins. L’étude avait pour but de décrire la pratique ICP au cours de la trajectoire de soins en oncologie. Pour soutenir cette description, l’adaptation du cadre de référence Person centred nursing framework (PCNF) de McCormack et McCance (2010) a été réalisée en incluant l’interprofessionnalité, telle que définie par Couturier (2009) et utilisée. Une étude qualitative de cas multiples a été réalisée auprès de deux équipes interprofessionnelles d’un centre hospitalier universitaire de la région de Montréal. L’échantillon (N=31) était composé de 8 patients, 3 proches, 18 professionnels et 2 gestionnaires. Vingt-huit entrevues ont été réalisées ainsi que 57,6 heures d’observation d’activités cliniques auxquelles participait le patient (ex., rendez-vous, traitement). Les résultats suggèrent que la pratique ICP des équipes est empreinte d’un dualisme de cultures (culture centrée sur le traitement versus culture davantage centrée sur le patient). De plus, les équipes étudiées ont présenté une pratique ICP fluctuante en raison de l’influence de nombreux facteurs tels le « fonctionnement de l’équipe », l’« environnement physique » et le « positionnement » des patients et des professionnels. Les résultats ont aussi suggéré que le déploiement des équipes de soins se fait à intensité variable au cours de la trajectoire. Il a été soulevé que les patients ont pu faire l’expérience d’une pratique ICP changeante, de bris dans la continuité des soins et de transition difficile entre les différentes périodes de la trajectoire. De plus, la description d’une pratique ICP souhaitée par les patients, leurs proches et les professionnels propose un accompagnement respectant le rythme du patient, sans prédominance des valeurs du professionnel ainsi qu’une assiduité dans la collaboration des membres de l’équipe. Cette étude suggère que les sciences infirmières peuvent ajouter aux connaissances interprofessionnelles actuelles en utilisant une perspective centrée sur le patient, perspective cohérente avec ses valeurs disciplinaires. De plus, de nombreuses pistes de réflexion sont proposées pour la pratique, la recherche, la gestion et la formation.

Description des profils des hauts consommateurs d’un département d’urgence et mise en à l’essai d’une intervention infirmière pour optimiser la trajectoire de soins

Rapport de stage présenté à la Faculté des sciences infirmières en vue de l'obtention du grade de Maître ès sciences (M.Sc.) en sciences infirmières option expertise-conseil en soins infirmiers

Le reti in Sanità

Il presente lavoro di ricerca intende analizzare l’importanza dei modelli organizzativi a reti per rispondere alla sfida della complessità del momento storico, politico, sociologico, economico; in modo particolare in Sanità per rispondere all’esigenza di mettere al centro la persona nel percorso di cura ed ottenere una migliore integrazione delle cure. Sebbene i vantaggi delle reti siano bene descritti in letteratura sono ancora pochi gli studi nell’ambito della valutazione. Il caso di studio ha riguardato la rete oncologica romagnola così come percepita dagli informatori chiave, dagli operatori (medici, infermieri, amministrativi) e dalle persone con esperienza di tumore. Dall’analisi degli informatori chiave emerge forte che la rete nasce per dare risposte di qualità ai bisogni dei pazienti, mentre per gli operatori quanto sia importante la dimensione delle relazioni umane e avere valori condivisi per raggiungere obiettivi di efficacia e qualità delle cure. Per quanto riguarda invece la percezione delle persone con esperienza di tumore si rileva quanto sia importante l’appropriatezza della traiettoria di cura nonché l’avere continuità in un percorso, già di per sé difficile, oltre all’importanza dell’umanizzazione dei servizi e della corretta comunicazione medico paziente.

Effect of a national primary care pay for performance scheme on emergency hospital admissions for ambulatory care sensitive conditions: controlled longitudinal study.

OBJECTIVE: To estimate the impact of a national primary care pay for performance scheme, the Quality and Outcomes Framework in England, on emergency hospital admissions for ambulatory care sensitive conditions (ACSCs). DESIGN: Controlled longitudinal study. SETTING: English National Health Service between 1998/99 and 2010/11. PARTICIPANTS: Populations registered with each of 6975 family practices in England. MAIN OUTCOME MEASURES: Year specific differences between trend adjusted emergency hospital admission rates for incentivised ACSCs before and after the introduction of the Quality and Outcomes Framework scheme and two comparators: non-incentivised ACSCs and non-ACSCs. RESULTS: Incentivised ACSC admissions showed a relative reduction of 2.7% (95% confidence interval 1.6% to 3.8%) in the first year of the Quality and Outcomes Framework compared with ACSCs that were not incentivised. This increased to a relative reduction of 8.0% (6.9% to 9.1%) in 2010/11. Compared with conditions that are not regarded as being influenced by the quality of ambulatory care (non-ACSCs), incentivised ACSCs also showed a relative reduction in rates of emergency admissions of 2.8% (2.0% to 3.6%) in the first year increasing to 10.9% (10.1% to 11.7%) by 2010/11. CONCLUSIONS: The introduction of a major national pay for performance scheme for primary care in England was associated with a decrease in emergency admissions for incentivised conditions compared with conditions that were not incentivised. Contemporaneous health service changes seem unlikely to have caused the sharp change in the trajectory of incentivised ACSC admissions immediately after the introduction of the Quality and Outcomes Framework. The decrease seems larger than would be expected from the changes in the process measures that were incentivised, suggesting that the pay for performance scheme may have had impacts on quality of care beyond the directly incentivised activities.

Use of a multidimensional assessment tool in a psychiatric adolescent care unit.

AIMS: Adolescent mental health problems require treatment and care that are adapted to their needs. To evaluate this issue, it was decided to implement a multidimensional instrument focused on a global approach to adolescent social and behavioural functioning, combined with the ICD-10 classification. METHODS: The combination of an assessment interview and a classification tool enabled the method to integrate the measurement of several domains of patient-based outcome rather than focus on the measurement of symptoms. A group of 68 adolescents from an inpatient unit were compared with 67 adolescents from the general population. RESULTS: Results suggest that adolescents from the care unit adopt significantly riskier behaviour compared with adolescents from the control group. As expected, the main problems identified refer to the psychological and familial areas. A cluster analysis was performed and provided three different profiles: a group with externalizing disorders and two groups with internalizing disorders. On the basis of a structured interview it was possible to obtain information in a systematic way about the adolescents' trajectory (delinquency, physical and sexual abuse, psychoactive substance use). CONCLUSION: It was shown that treatment and care should not focus exclusively on mental health symptoms, but also upon physical, psychological and social aspects of the adolescent. A global approach helps in the consideration of the multitude of factors which must be taken into account when working with people with serious mental health problems and may help to turn the care unit's activity more specifically towards the needs of these adolescents.

Barriers in health care to breast cancer: perception of women

Identifying the barriers in the access to health care to breast cancer perceived by women undergoing chemotherapy.Method: An exploratory descriptive study. The sample consisted of 58 women with breast cancer receiving chemotherapy and registered in the public oncology ambulatory of Aracaju-Sergipe. Data collection was carried out between October 2011 and March 2012 by semistructured interviews, and data were processed using the SPSS, version 17.Results: Among the interviewed women, 37 (63.8%) reported at least a barrier in the trajectory of care for breast cancer. The organizational and health services barriers were the most reported in the periods of investigation and treatment of breast cancer.Conclusion: In face of these findings, the barriers should be considered in public health policies and programs for the control of breast cancer in Sergipe.



Le stress du soignant ou comment se soigner soi-même [Stress in health care workers]

La littérature scientifique confirme que les soignants ont besoin de soutien. Par-delà la surchage clinique et administrative, le stress lié à la signifiance des facteurs contextuels est une source de détresse importante. La reconnaissance et la gestion de ce stress peuvent soutenir le clinicien de manière durable. L'article discute les éléments clés de ces stresseurs, notamment le rôle des émotions du soignant, la reconnaissance des limites, la confusion concernant l'empathie, l'influence du développement et de la trajectoire de vie sur l'identité professionnelle ainsi que le conflit que représente le fait d'être un soignant qui a besoin d'aide. A growing body of evidence indicates that health care professionals are in need of support. Beside heavy clinical patient volume or administrative duties, stress related to the significance of contextual factors is an important source of clinician's distress. Identification of and working through such stress can be a durable source of support. This article discusses key elements of these stressors, namely, the role of emotions of the clinician, awareness of limits, confusion about empathy, the influence of development and life trajectory on professional identity and the conflicting roles of the health care provider being in need of support http://titan.medhyg.ch/mh/formation/article.php3?sid=32934

From neuroprogression to neuroprotection: implications for clinical care.

Bipolar disorder follows a staged trajectory in which persistence of illness is associated with a number of clinical features such as progressive shortening of the inter-episode interval and decreased probability of treatment response. This neuroprogressive clinical process is reflected by both progressive neuroanatomical changes and evidence of cognitive decline. The biochemical foundation of this process appears to incorporate changes in inflammatory cytokines, cortisone, neurotrophins and oxidative stress. There is a growing body of evidence to suggest that these markers may differ between the early and late stages of the disorder. The presence of a series of tangible targets raises the spectre of development of rational neuroprotective strategies, involving judicious use of current therapies and novel agents. Most of the currently used mood stabilisers share effects on oxidative stress and neurotrophins, while novel potentially neuroprotective agents are being developed. These developments need to be combined with service initiatives to maximise the opportunities for early diagnosis and intervention.

Assessing waiting times in the clinical trajectory of patients with lung cancer

Le cancer du poumon a une incidence et une létalité parmi les plus hautes de tous les cancers diagnostiqués au Canada. En considérant la gravité du pronostic et des symptômes de la maladie, l’accès au traitement dans les plus brefs de délais est essentiel. Malgré l’engagement du gouvernement fédéral et les gouvernements provinciaux de réduire les délais de temps d’attente, des balises pour les temps d’attente pour le traitement d’un cancer ne sont toujours pas établis. En outre, le compte-rendu des indicateurs des temps d’attente n’est pas uniforme à travers les provinces. Une des solutions proposées pour la réduction des temps d’attente pour le traitement du cancer est les équipes interdisciplinaires. J’ai complété un audit du programme interdisciplinaire traitant le cancer du poumon à l’Hôpital général juif (l’HGJ) de 2004 à 2007. Les objectifs primaires de l’étude étaient : (1) de faire un audit de la performance de l’équipe interdisciplinaire à l’HGJ en ce qui concerne les temps d’attente pour les intervalles critiques et les sous-groupes de patients ; (2) de comparer les temps d’attente dans la trajectoire clinique des patients traités à l’HGJ avec les balises qui existent ; (3) de déterminer les facteurs associés aux délais plus longs dans cette population. Un objectif secondaire de l’étude était de suggérer des mesures visant à réduire les temps d’attente. Le service clinique à l’HGJ a été évalué selon les balises proposées par le British Thoracic Society, Cancer Care Ontario, et la balise pan-canadienne pour la radiothérapie. Les patients de l’HGJ ont subi un délai médian de 9 jours pour l’intervalle «Ready to treat to first treatment», et un délai médian de 30 jours pour l’intervalle entre le premier contact avec l’hôpital et le premier traitement. Les patients âgés de plus de 65 ans, les patients avec une capacité physique diminuée, et les patients avec un stade de tumeur limité étaient plus à risque d’échouer les balises pour les temps d’attente.

Paradigms in health care and its relationship to the nursing theories: an analytical test

DANTAS, Rodrigo Assis Neves; NÓBREGA, Walkíria Gomes da; MORAIS FILHO, Luiz Alves; MACÊDO, Eurides Araújo Bezerra de ; FONSECA , Patrícia de Cássia Bezerra; ENDERS, Bertha Cruz; MENEZES, Rejane Maria Paiva de; TORRES , Gilson de Vasconcelos. Paradigms in health care and its relationship to the nursing theories: an analytical test . Revista de Enfermagem UFPE on line. v.4,n.2, p.16-24.abr/jun. 2010. Disponível em < http://www.ufpe.br/revistaenfermagem/index.php/revista>.

Influence of psychosocial risk factors on the trajectory of mental health problems from childhood to adolescence: a longitudinal study

Background Longitudinal epidemiological studies involving child/adolescent mental health problems are scarce in developing countries, particularly in regions characterized by adverse living conditions. We examined the influence of psychosocial factors on the trajectory of child/adolescent mental health problems (CAMHP) over time. Methods A population-based sample of 6- to 13-year-olds with CAMHP was followed-up from 2002–2003 (Time 1/T1) to 2007–2008 (Time 2/T2), with 86 out of 124 eligible children/adolescents at T1 being reassessed at T2 (sample loss: 30.6%). Outcome: CAMHP at T2 according to the Child Behavior Checklist/CBCL’s total problem scale. Psychosocial factors: T1 variables (child/adolescent’s age, family socioeconomic status); trajectory of variables from T1 to T2 (child/adolescent exposure to severe physical punishment, mother exposure to severe physical marital violence, maternal anxiety/depression); and T2 variables (maternal education, child/adolescent’s social support and pro-social activities). Results Multivariate analysis identified two risk factors for child/adolescent MHP at T2: aggravation of child/adolescent physical punishment and aggravation of maternal anxiety/depression. Conclusions The current study shows the importance of considering child/adolescent physical punishment and maternal anxiety/depression in intervention models and mental health care policies.