Children with Special Health Care Needs: Comparison of the Effects of Home Care Setting, Prescribed Pediatric Extended Care Setting, and Long-Term Care Setting on Child and Family Health Outcomes and Health Care Service Use

Technological advances during the past 30 years have dramatically improved survival rates for children with life-threatening conditions (preterm births, congenital anomalies, disease, or injury) resulting in children with special health care needs (CSHCN), children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who require health and related services beyond that required by children generally. There are approximately 10.2 million of these children in the United States or one in five households with a child with special health care needs. Care for these children is limited to home care, medical day care (Prescribed Pediatric Extended Care; P-PEC) or a long term care (LTC) facility. There is very limited research examining health outcomes of CSHCN and their families. The purpose of this research was to compare the effects of home care settings, P-PEC settings, and LTC settings on child health and functioning, family health and function, and health care service use of families with CSHCN. Eighty four CSHCN ages 2 to 21 years having a medically fragile or complex medical condition that required continual monitoring were enrolled with their parents/guardians. Interviews were conducted monthly for five months using the PedsQL TM Generic Core Module for child health and functioning, PedsQL TM Family Impact Module for family health and functioning, and Access to Care from the NS-CSHCN survey for health care services. Descriptive statistics, chi square, and ANCOVA were conducted to determine differences across care settings. Children in the P-PEC settings had a highest health care quality of life (HRQL) overall including physical and psychosocial functioning. Parents/guardians with CSHCN in LTC had the highest HRQL including having time and energy for a social life and employment. Parents/guardians with CSHCN in home care settings had the poorest HRQL including physical and psychosocial functioning with cognitive difficulties, difficulties with worry, communication, and daily activities. They had the fewest hours of employment and the most hours providing direct care for their children. Overall health care service use was the same across the care settings.

Time-limited home-care reablement services for maintaining and improving the functional independence of older adults

Background: Reablement, also known as restorative care, is one possible approach to home-care services for older adults at risk of functional decline. Unlike traditional home-care services, reablement is frequently time-limited (usually six to 12 weeks) and aims to maximise independence by offering an intensive multidisciplinary, person-centred and goal-directed intervention. Objectives: To assess the effects of time-limited home-care reablement services (up to 12 weeks) for maintaining and improving the functional independence of older adults (aged 65 years or more) when compared to usual home-care or wait-list control group. Search methods: We searched the following databases with no language restrictions during April to June 2015: the Cochrane Central Register of Controlled Trials (CENTRAL); MEDLINE (OvidSP); Embase (OvidSP); PsycINFO (OvidSP); ERIC; Sociological Abstracts; ProQuest Dissertations and Theses; CINAHL (EBSCOhost); SIGLE (OpenGrey); AgeLine and Social Care Online. We also searched the reference lists of relevant studies and reviews as well as contacting authors in the field. Selection criteria: We included randomised controlled trials (RCTs), cluster randomised or quasi-randomised trials of time-limited reablement services for older adults (aged 65 years or more) delivered in their home; and incorporated a usual home-care or wait-list control group. Data collection and analysis: Two authors independently assessed studies for inclusion, extracted data, assessed the risk of bias of individual studies and considered quality of the evidence using GRADE. We contacted study authors for additional information where needed. Main results: Two studies, comparing reablement with usual home-care services with 811 participants, met our eligibility criteria for inclusion; we also identified three potentially eligible studies, but findings were not yet available. One included study was conducted in Western Australia with 750 participants (mean age 82.29 years). The second study was conducted in Norway (61 participants; mean age 79 years). We are very uncertain as to the effects of reablement compared with usual care as the evidence was of very low quality for all of the outcomes reported. The main findings were as follows. Functional status: very low quality evidence suggested that reablement may be slightly more effective than usual care in improving function at nine to 12 months (lower scores reflect greater independence; standardised mean difference (SMD) -0.30; 95% confidence interval (CI) -0.53 to -0.06; 2 studies with 249 participants). Adverse events: reablement may make little or no difference to mortality at 12 months' follow-up (RR 0.97; 95% CI 0.74 to 1.29; 2 studies with 811 participants) or rates of unplanned hospital admission at 24 months (RR 0.94; 95% CI 0.85 to 1.03; 1 study with 750 participants). The very low quality evidence also means we are uncertain whether reablement may influence quality of life (SMD -0.23; 95% CI -0.48 to 0.02; 2 trials with 249 participants) or living arrangements (RR 0.92, 95% CI 0.62 to 1.34; 1 study with 750 participants) at time points up to 12 months. People receiving reablement may be slightly less likely to have been approved for a higher level of personal care than people receiving usual care over the 24 months' follow-up (RR 0.87; 95% CI 0.77 to 0.98; 1 trial, 750 participants). Similarly, although there may be a small reduction in total aggregated home and healthcare costs over the 24-month follow-up (reablement: AUD 19,888; usual care: AUD 22,757; 1 trial with 750 participants), we are uncertain about the size and importance of these effects as the results were based on very low quality evidence. Neither study reported user satisfaction with the service. Authors' conclusions: There is considerable uncertainty regarding the effects of reablement as the evidence was of very low quality according to our GRADE ratings. Therefore, the effectiveness of reablement services cannot be supported or refuted until more robust evidence becomes available. There is an urgent need for high quality trials across different health and social care systems due to the increasingly high profile of reablement services in policy and practice in several countries.

L’expérience de dispenser des soins palliatifs à domicile pour des infirmières travaillant dans un contexte non spécialisé

Depuis plusieurs années, la définition des soins palliatifs a été élargie pour inclure toutes les maladies ayant un pronostic réservé. Le Québec s’est doté d’une politique de soins palliatifs dont l’un des principes directeurs est de maintenir les patients dans leur milieu de vie naturel. Alors que présentement environ 10 % de la population nécessitant des soins palliatifs en reçoit, on peut s’attendre à une augmentation des demandes de soins palliatifs à domicile dans les CSSS du Québec. La présente étude a pour but de décrire et comprendre l’expérience de dispenser des soins palliatifs à domicile pour des infirmières travaillant dans un contexte non spécialisé. Une étude qualitative ayant comme perspective disciplinaire la théorie de l’humain-en-devenir de Parse a été réalisée. Des entrevues ont été effectuées auprès de huit infirmières travaillant au maintien à domicile d’un CSSS de la région de Montréal qui font des soins palliatifs dans un contexte non spécialisé. L’analyse des données a été effectuée selon la méthode d’analyse phénoménologique de Giorgi (1997). Les résultats s’articulent autour de trois thèmes qui décrivent l’expérience de dispenser des soins palliatifs à domicile pour des infirmières qui travaillent dans un contexte non spécialisé. Elles accompagnent les patients et leur famille, en s’engageant à donner des soins humains, et développant une relation d’accompagnement avec le patient et ses proches. Elles doivent composer avec les réactions du patient et de sa famille et doivent parfois informer le patient de la progression de son état de santé. De plus, elles se préoccupent de donner des soins de qualité en composant avec la complexité des soins palliatifs à domicile tout en s’assurant de soulager les symptômes des patients et de tenter de développer leur expertise. Finalement, le fait d’être confrontée à la mort permet de cheminer. Ainsi, les infirmières vivent des émotions, reçoivent du soutien, sont touchées personnellement par la mort, éprouvent de la satisfaction envers les soins qu’elles donnent et apprennent personnellement de leur expérience. L’essence du phénomène à l’étude est que lorsque les infirmières font un véritable accompagnement du patient et de sa famille en s’efforçant de donner des soins de qualité, cela crée des conditions permettant qu’un cheminement personnel et professionnel sur la vie et la mort soit effectué par les infirmières.

Palliativ vård i hemmet - Anhörigas upplevelser av att vårda en närstående med cancer : En Litteraturöversikt

Syfte: Syftet med litteraturöversikten var att beskriva anhörigas upplevelser av att vårda sin närstående i den palliativa vården i hemmet. Metod: Studien genomfördes som en litteraturöversikt. Insamlingen av vetenskapliga artiklar utfördes på databaserna CINAHL, PubMed, Vård I Norden och manuella sökningar utfördes i elektroniska tidskrifter. I resultatet användes sammanlagt 15 kvalitativa artiklar som svarade mot litteraturöversiktens syfte och frågeställning. Bedömningsmall med kvalitativ inriktning användes för att granska artiklarnas kvalité. Artiklar med medel till hög kvalité inkluderades i studiens resultat. Resultat: Resultatet byggde på fem huvudteman utifrån anhörigas upplevelser av palliativ vård, (1) anhörigas beslut att vårda en närstående i hemmet, beskriver anhörigas negativa syn på sjukhusmiljön och närståendes önskan om att avsluta sitt liv i hemmet. (2) positiva och negativa faktorer med vård i hemmet, beskriver trygghet i palliativa teamets tillgänglighet, negativ faktor var bland annat trötthet, isolering och brist på stöd. (3) ansvar för vården, att vara oförberedd på rollen som anhörigvårdare och 24 timmars ansvar för sin närstående. (4) relationen mellan anhörig och närstående, stöd i att kommunicera med sin närstående i existentiella frågor. (5) stöd från kvalificerad vårdpersonal, beskriver bristande information från kvalificerad vårdpersonal om sjukdomsförlopp och vårdarrollen. Psykiskt- socialt- och existentiellt stöd var bristfälligt och som anhöriga uttryckte behov av. Konklusion: De främsta faktorerna till valet att bli anhörigvårdare grundade sig i viljan att uppfylla närståendes önskan att få spendera sista tiden i hemmet och att sjukhusmiljön sågs som kall och opersonlig. Anhöriga önskade socialt- psykiskt- och existentiellt stöd.

Anhörigas erfarenheter av palliativ vård i hemmet – en litteraturöversikt

Bakgrund: Med palliativ vård avses den vård som patienten får i livets slutskede, där syftet är att lindra lidande och främja livskvalitet. Den palliativa vården i hemmet har under senare år ökat, dels på grund av att tillgången av kvalificerad vård genom hemsjukvård har utvecklats. Sjuksköterskans roll inom den palliativa vården är att tillgodose patientens men även anhörigas behov. Syfte: Syftet var att beskriva anhörigas erfarenheter av palliativ vård då en patient vårdas i hemmet, anhörigas behov av stöd samt hur situationen påverkar vardagen. Metod: En litteraturöversikt med kvalitativ ansats. Resultatet är baserat på 13 vetenskapliga artiklar som identifierats via databaserna Cinahl, PubMed och Web of Science. Resultat: Resultatet visar att beslutet om den palliativa vården ska ske i hemmet fattas av patienten men är beroende av vilken relation patient och anhörig har till varandra. Att vara tillgänglig 24 timmar om dygnet runt kan vara påfrestande för anhöriga som upplever både fysiska- och psykiska besvär av situationen. Det ansågs viktigt att bibehålla vardagliga rutiner trots att döden är närvarande. Anhöriga behöver stöd från vårdpersonal, familj och vänner för att orka med situationen. Slutsats: Anhörigas behov är individuella. Vårdpersonal behöver mer kunskap om anhörigas behov inom den palliativa vården för att ge ett bättre bemötande till anhöriga när den palliativa vården bedrivs i hemmet.

Upplevelser av palliativ vård i hemmet under livets slutskede – ur ett anhörigperspektiv : En litteraturöversikt

Bakgrund: Palliativ vård handlar om att ge stöd till patienten och anhöriga under och efter vårdtiden. De ”6 s:n” är en arbetsmodell inom palliativ vård där patienten har rätt till självbestämmande och att upprätthålla sina sociala relationer, även stöd till anhöriga ingår. Anhöriga har en betydelsefull roll i den palliativa vården, deras närvaro skapar möjlighet för den döende att vara hemma i livets slutskede. Syfte: Syftet var att beskriva anhörigas upplevelse av palliativ vård i hemmet under livets slutskede. Metod: Litteraturöversikt baserad på 15 vetenskapliga artiklar från fem olika länder med kvalitativ ansats. Resultat: Fem kategorier identifierades kopplade till anhörigas upplevelser: Palliativa teamets inträde i hemmet, anhörigas vårdansvar, den medicintekniska utrusningens inverkan på vardagslivet, känslor och konsekvenser för anhöriga samt förbättringsmöjligheter och anhörigas uppfattning om palliativ vård. Slutsats: Anledningen till anhörigas vårdansvar var löftet att få dö hemma, uppgiften upplevdes krävande och gav konsekvenser på sömnen och deras fysiska och psykiska mående. Detta var genomgående i hela litteraturöversikten. Vården i hemmet sågs som den rätta platsen att dö på för alla parter, endast en anhörig uttryckte avsky för situationen. Enligt anhöriga var stödet bra dock fanns det ett ökat behov av mer resurser för fullständig trygghet.

Il monitoraggio della qualità di vita e dei bisogni di pazienti oncologici e caregiver: il caso ANT

La Fondazione ANT rappresenta una delle più ampie esperienze al mondo di assistenza socio-sanitaria gratuita a domicilio ai malati di tumore, tramite équipe di specialisti costituite da medici, psicologi e infermieri. La patologia oncologica ha un enorme impatto sul benessere dei pazienti. Un modo per raggruppare i diversi sintomi di disagio psicologico è utilizzare il concetto di distress, che sarebbe importante monitorare in modo semplice e veloce. Primo studio: 66 pazienti oncologici (40% uomini; età media 54 anni) in cure palliative domiciliari. Il 79% dei pazienti ha mostrato livelli clinicamente significativi di distress. Il 55% dei partecipanti allo studio ha riportato alti livelli di ansia, e l'81% dei pazienti ha riportato alti livelli di depressione. Dall'analisi delle curve ROC il singolo item del Distress Thermometer, con un cut-off maggiore o uguale a 4, è stato in grado di rilevare il 97% dei soggetti con punteggi clinici di ansia e depressione, quindi può essere utilizzato anche come uno strumento di screening precoce rapido ed affidabile per i disturbi dell'umore. I familiari sono la prima risorsa dei malati di tumore, e l'identificazione dei loro bisogni è utile per individuare chi ha maggiore necessità di aiuto ed in quali aree. Secondo studio: 115 caregiver di pazienti oncologici (37% uomini; età media 52 anni). Di seguito i bisogni più frequenti. Salute psicofisica: “preoccupazioni circa il/la paziente” (72%), ansia (53%) e rabbia (52%). Informazioni: “come prendersi cura del paziente” (64%), “terapie alternative e/o complementari” (64%) e “come gestire lo stress” (57%). Servizi e strutture sanitarie: “un operatore di riferimento”, (65%), “cure infermieristiche a domicilio” (62%), “indicazioni su servizi ospedalieri” (57%), ed “assistenza per caregiver, ad esempio consulenza psicologica” (55%). Il monitoraggio dei bisogni consentirebbe un'ottimizzazione dell'assistenza, prevenendo situazioni che potrebbero compromettere il benessere della famiglia e la qualità dell'assistenza fornita al paziente.

Palliative care at home: general practitioners working with palliative care teams

Home care is the preferred option for most people with a terminal illness. Providing home care relies on good community-based services, and a general practice workforce competent in palliative care practice and willing to accommodate patients' needs. Structured palliative care training of general practitioners is needed at undergraduate and postgraduate level, with attention to barriers to teamwork and communication. Good palliative care-can be delivered to patients at home by GPs (supported by specialist palliative care teams) and community nurses, with access to an inpatient facility when required. To optimise patient care, careful planning and good communication between all members of the healthcare team is crucial.

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.

How well do general practitioners deliver palliative care? A systematic review

General practitioners (GPs) deliver the majority of palliative care to patients in the last year of life. This article seeks to examine the nature of GP care, perceptions of the GPs themselves and others of that care, the adequacy of palliative care training, issues relating to accessibility of GPs to palliative care patients, and strategies that may be of use in encouraging more effective delivery of palliative care by GPs. Medline and PubMed databases from 1966 to 2000 were searched, and 135 references identified. Sixty-six of these described studies relevant to GP palliative care. GPs value this part of their work. Most of the time, patients appreciate the contribution the GP makes to palliative care particularly if the GP is accessible, takes time to listen, allows patient and carer to ventilate their feelings, and is seen to be making efforts made regarding symptom relief. However, reports from bereaved relatives suggest that palliative care is performed less well in the community than in other settings. GPs express discomfort about their competence to perform palliative care adequately. They tend to miss symptoms which are not treatable by them, or which are less common. However, with appropriate specialist support and facilities, GPs have been shown to deliver sound and effective care. GP comfort working with specialist teams increases with exposure to this form of patient management, as does the understanding of the potential other team members have in contributing to the care of the patient. Formal arrangements engaging GPs to work with specialist teams have been shown to improve functional outcomes, patient satisfaction, improve effective use of resources and improve effective physician behaviour in other areas of medicine. Efforts by specialist services to develop formal involvement of GPs in the care of individual patients, may be an effective method of improving GP palliative care skills and appreciation of the roles specialist services can play.

Effectiveness of a specialized outpatient palliative care service as experienced by patients and caregivers.

Abstract Objectives: In Germany since 2007 patients with advanced life-limiting diseases are eligible for Specialized Outpatient Palliative Care (SOPC). To provide this service, SOPC teams have been established as a new facility in the health care system. The objective of this study was to evaluate the effectiveness of one of the first SOPC teams based at the Munich University Hospital. Methods: All patients treated by the SOPC team and their primary caregivers were eligible for this prospective nonrandomized study. The main topics of the surveys before and after involvement of the SOPC team were: for patients, the assessment of symptom burden (Minimal Documentation System for Palliative Medicine, MIDOS), satisfaction with quality of palliative care (Palliative Outcome Scale, POS), and quality of life (McGill Quality of Life Questionnaire, MQOL); for caregivers, burden of care (Häusliche Pflegeskala, home care scale, HPS), anxiety and depression (Hospital Anxiety and Depression Scale, HADS), and quality of life (Quality of Life in Life-Threatening Illness-Family Carer Version, QOLLTI-F). Results: Of 100 patients treated between April and November 2011, 60 were included in the study (median age 67.5 years, 55% male, 87% oncological diseases). In 23 of 60 patients, only caregivers could be interviewed. The median interval between the first and second interview was 2.5 weeks. Quality of life increased significantly in patients (p<0.05) and caregivers (p<0.001), as did the patients' perception of quality of palliative care (POS, p<0.001), while the caregivers' psychological distress and burden of care significantly decreased (HADS, p<0.001; HPS, p<0.001). Conclusions: The involvement of an SOPC team leads to a significant improvement in the quality of life of patients and caregivers and can lower the burden of home care for the caregivers of severely ill patients.

Why cancer patients choose in-patient complementary therapy in palliative care: a qualitative study at Arokhayasala Hospice in Thailand

Cancer patients often choose complementary and alternative medicine (CAM) in palliative care, often in addition to conventional treatment and without medical advice or approval. Herbal medicines (HM) are the most commonly used type of CAM, but rarely available on an in-patient basis for palliative care. The motivations which lead very ill patients to travel far to receive such therapies are not clear. A qualitative study was therefore carried out to investigate influences on choosing to attend a CAM herbal hospice, to identify cancer patients’ main concerns about end-of-life care. Semi-structured interviews with 32 patients were conducted and analysed using thematic analysis. Patients were recruited from Arokhayasala, a Buddhist cancer hospice in Thailand which provides CAM, in the form of HM, a restricted diet, Thai yoga, deep-breathing exercises, meditation, chanting, Dhamma, laughter and music therapy, free-of-charge. The main factors influencing decision-making were a positive attitude towards HMs and previous use of them, dissatisfaction with conventional treatment, the home environment and their relationships with hospital doctors. Patients’ own perceptions and experiences were more important in making the decision to use CAM, and especially HM, in palliative cancer care than referral by healthcare professionals or scientific evidence of efficacy. Patients were prepared to travel far and live away from home to receive such care, especially as it was cost-free. In view of patients’ previously stated satisfaction with the regime at the Arokhayasala, these findings may be relevant to the provision of in-patient cancer palliative care to other patients.

Botucatu, Brazil: A Regional Community Palliative Care Model

The Pain Management and Palliative Care Service in the Department of Anesthesia at Botucatu Medical School, UNESP is a pioneer in Brazil. Based on an interdisciplinary team that provides specialized inpatient, ambulatory outpatient, and home care to patients in Botucatu and the surrounding region, the service is also able to provide extensive educational opportunities in pain management and palliative care for medical students, anesthesia residents, practicing anesthetists, and nurses. © 2007 U.S. Cancer Pain Relief Committee.

A pragmatic 2 × 2 × 2 factorial cluster randomized controlled trial of educational outreach visiting and case conferencing in palliative care—methodology of the Palliative Care Trial [ISRCTN 81117481]

The demand for palliative care is increasing, yet there are few data on the best models of care nor well-validated interventions that translate current evidence into clinical practice. Supporting multidisciplinary patient-centered palliative care while successfully conducting a large clinical trial is a challenge. The Palliative Care Trial (PCT) is a pragmatic 2 x 2 x 2 factorial cluster randomized controlled trial that tests the ability of educational outreach visiting and case conferencing to improve patient-based outcomes such as performance status and pain intensity. Four hundred sixty-one consenting patients and their general practitioners (GPs) were randomized to the following: (1) GP educational outreach visiting versus usual care, (2) Structured patient and caregiver educational outreach visiting versus usual care and (3) A coordinated palliative care model of case conferencing versus the standard model of palliative care in Adelaide, South Australia (3:1 randomization). Main outcome measures included patient functional status over time, pain intensity, and resource utilization. Participants were followed longitudinally until death or November 30, 2004. The interventions are aimed at translating current evidence into clinical practice and there was particular attention in the trial's design to addressing common pitfalls for clinical studies in palliative care. Given the need for evidence about optimal interventions and service delivery models that improve the care of people with life-limiting illness, the results of this rigorous, high quality clinical trial will inform practice. Initial results are expected in mid 2005. (c) 2005 Elsevier Inc. All rights reserved.