Multiple perspectives on quality of life for residents with dementia in long term care facilities: Protocol for a comprehensive Australian study

Background Dementia is a chronic illness without cure or effective treatment, which results in declining mental and physical function and assistance from others to manage activities of daily living. Many people with dementia live in long term care facilities, yet research into their quality of life (QoL) was rare until the last decade. Previous studies failed to incorporate important variables related to the facility and care provision or to look closely at the daily lives of residents. This paper presents a protocol for a comprehensive, multi-perspective assessment of QoL of residents with dementia living in long term care in Australia. A secondary aim is investigating the effectiveness of self-report instruments for measuring QoL. Methods The study utilizes a descriptive, mixed methods design to examine how facility, care staff, and resident factors impact QoL. Over 500 residents with dementia from a stratified, random sample of 53 facilities are being recruited. A sub-sample of 12 residents is also taking part in qualitative interviews and observations. Conclusions This national study will provide a broad understanding of factors underlying QoL for residents with dementia in long term care. The present study uses a similar methodology to the US-based Collaborative Studies of Long Term Care (CS-LTC) Dementia Care Study, applying it to the Australian setting.

Influencers on quality of life as reported by people living with dementia in long-term care: A descriptive exploratory approach

Background Over half of the residents in long-term care have a diagnosis of dementia. Maintaining quality of life is important, as there is no cure for dementia. Quality of life may be used as a benchmark for caregiving, and can help to enhance respect for the person with dementia and to improve care provision. The purpose of this study was to describe quality of life as reported by people living with dementia in long-term care in terms of the influencers of, as well as the strategies needed, to improve quality of life. Methods A descriptive exploratory approach. A subsample of twelve residents across two Australian states from a national quantitative study on quality of life was interviewed. Data were analysed thematically from a realist perspective. The approach to the thematic analysis was inductive and data-driven. Results Three themes emerged in relation to influencers and strategies related to quality of life: (a) maintaining independence; (b) having something to do, and; (c) the importance of social interaction. Conclusions The findings highlight the importance of understanding individual resident needs and consideration of the complexity of living in large group living situations, in particular in regard to resident decision-making.

Process quality indicators targeting cognitive impairment to support quality of care for older people with cognitive impairment in emergency departments

Objectives The objective of this study was to develop process quality indicators (PQIs) to support the improvement of care services for older people with cognitive impairment in emergency departments (ED). Methods A structured research approach was taken for the development of PQIs for the care of older people with cognitive impairment in EDs, including combining available evidence with expert opinion (phase 1), a field study (phase 2), and formal voting (phase 3). A systematic review of the literature identified ED processes targeting the specific care needs of older people with cognitive impairment. Existing relevant PQIs were also included. By integrating the scientific evidence and clinical expertise, new PQIs were drafted and, along with the existing PQIs, extensively discussed by an advisory panel. These indicators were field tested in eight hospitals using a cohort of older persons aged 70 years and older. After analysis of the field study data (indicator prevalence, variability across sites), in a second meeting, the advisory panel further defined the PQIs. The advisory panel formally voted for selection of those PQIs that were most appropriate for care evaluation. Results In addition to seven previously published PQIs relevant to the care of older persons, 15 new indicators were created. These 22 PQIs were then field tested. PQIs designed specifically for the older ED population with cognitive impairment were only scored for patients with identified cognitive impairment. Following formal voting, a total of 11 PQIs were included in the set. These PQIs targeted cognitive screening, delirium screening, delirium risk assessment, evaluation of acute change in mental status, delirium etiology, proxy notification, collateral history, involvement of a nominated support person, pain assessment, postdischarge follow-up, and ED length of stay. Conclusions This article presents a set of PQIs for the evaluation of the care for older people with cognitive impairment in EDs. The variation in indicator triggering across different ED sites suggests that there are opportunities for quality improvement in care for this vulnerable group. Applied PQIs will identify an emergency services' implementation of care strategies for cognitively impaired older ED patients. Awareness of the PQI triggers at an ED level enables implementation of targeted interventions to improve any suboptimal processes of care. Further validation and utility of the indicators in a wider population is now indicated.

Structural quality indicators to support quality of care for older people with cognitive impairment in emergency departments

Objectives The purpose of this study was to identify the structural quality of care domains and to establish a set of structural quality indicators (SQIs) for the assessment of care of older people with cognitive impairment in emergency departments (EDs). Methods A structured approach to SQI development was undertaken including: 1) a comprehensive search of peer-reviewed and gray literature focusing on identification of evidence-based interventions targeting structure of care of older patients with cognitive impairment and existing SQIs; 2) a consultative process engaging experts in the care of older people and epidemiologic methods (i.e., advisory panel) leading to development of a draft set of SQIs; 3) field testing of drafted SQIs in eight EDs, leading to refinement of the SQI set, and; 4) an independent voting process among the panelists for SQI inclusion in a final set, using preestablished inclusion and exclusion criteria. Results At the conclusion of the process, five SQIs targeting the management of older ED patients with cognitive impairment were developed: 1) the ED has a policy outlining the management of older people with cognitive impairment during the ED episode of care; 2) the ED has a policy outlining issues relevant to carers of older people with cognitive impairment, encompassing the need to include the (family) carer in the ED episode of care; 3) the ED has a policy outlining the assessment and management of behavioral symptoms, with specific reference to older people with cognitive impairment; 4) the ED has a policy outlining delirium prevention strategies, including the assessment of patients' delirium risk factors, and; 5) the ED has a policy outlining pain assessment and management for older people with cognitive impairment. Conclusions This article presents a set of SQIs for the evaluation of performance in caring for older people with cognitive impairment in EDs.

Saudi Arabian adult intensive care unit pressure ulcer incidence and risk factors: A prospective cohort study

The purpose of this study was to identify pressure ulcer (PU) incidence and risk factors that are associated with PU development in patients in two adult intensive care units (ICU) in Saudi Arabia. A prospective cohort study design was used. A total of 84 participants were screened second daily basis until discharge or death, over a consecutive 30-day period, out of which 33 participants with new PUs were identified giving a cumulative hospital-acquired PU incidence of 39·3% (33/84 participants). The incidence of medical devices-related PUs was 8·3% (7/84). Age, length of stay in the ICU, history of cardiovascular disease and kidney disease, infrequent repositioning, time of operation, emergency admission, mechanical ventilation and lower Braden Scale scores independently predicted the development of a PU. According to binary logistic regression analyses, age, longer stay in ICU and infrequent repositioning were significant predictors of all stages of PUs, while the length of stay in the ICU and infrequent repositioning were associated with the development of stages II-IV PUs. In conclusion, PU incidence rate was higher than that reported in other international studies. This indicates that urgent attention is required for PU prevention strategies in this setting.

Redefining dermatologists’ role in skin cancer early detection and follow-up care

Early diagnosis of melanoma leads to the best prognosis for patients and may be more likely achieved when those who are at high risk for melanoma undergo regular and systematic monitoring. However, many people rarely or never see a dermatologist. Risk prediction models (recently reviewed by Usher-Smith et al ) could assist to triage people into preventive care appropriate for their risk profile. Most risk prediction models contain measures of phenotype including skin, eye and hair colour as well as genetic mutations. Almost all also contain the number and size of naevi, as well as the presence of naevi with atypical features which are independently associated with melanoma risk. In the absence of formal population-based screening programs for melanoma in most countries worldwide, people with high risk phenotypes may need to consider regular monitoring or self-monitoring of their naevi , especially since the vast majority of melanomas are found by people themselves or their friend and relatives. Another group of patients that will require regular monitoring are patients who have been successfully treated for their first melanoma, whose risk to develop a second melanoma is greatly increased . In a US study of 89,515 melanoma survivors those with a previous diagnosis of melanoma had a 9-fold increased risk of developing subsequent melanoma compared with the general population, equating to a rate of 3.76 per 1000 person-years, while in an Australian study, risk of subsequent melanoma was 6 per 1000 person-years. Regular follow-up is therefore essential for melanoma survivors, especially during the first few years after initial melanoma diagnosis.

Guidelines for syringe driver management in palliative care

These guidelines are intended to provide clinicians and palliative care services with guidelines to inform practice, the development of policy and procedures, and associated training and education programs in relation to portable subcutaneous infusion device (syringe driver) management.

What are the barriers of quality survivorship care for haematology cancer patients? Qualitative insights from cancer nurses

Purpose: Many haematological cancer survivors report long-term physiological and psychosocial effects beyond treatment completion. These survivors continue to experience impaired quality of life (QoL) as a result of their disease and aggressive treatment. As key members of the multidisciplinary team, the purpose of this study is to examine the insights of cancer nurses to inform future developments in survivorship care provision. Methods: Open text qualitative responses from two prospective Australian cross-sectional surveys of nurses (n=136) caring for patients with haematological cancer. Data were analysed thematically, using an inductive approach to identify themes. Results: This study has identified a number of issues that nurses perceive as barriers to quality survivorship care provision. Two main themes were identified; the first relating to the challenges nurses face in providing care (‘care challenges’), and the second relating to the challenges of providing survivorship care within contemporary health care systems (‘system challenges’). Conclusions: Cancer nurses perceive the nature of haematological cancer and its treatment, and of the health care system itself, as barriers to the provision of quality survivorship care. Care challenges such as the lack of a standard treatment path and the relapsing or remitting nature of haematological cancers may be somewhat intractable, but system challenges relating to clearly defining and delineating professional responsibilities and exchanging information with other clinicians are not. Implications for Cancer Survivors: Addressing the issues identified will facilitate cancer nurses’ provision of survivorship care, and help address haematological survivors’ needs with regard to the physical and psychosocial consequences of their cancer and treatment.

Survivorship care provision for patients with hematologic malignancies: The quest for quality evidence

This is an editorial that depicts the importance for developing more quality evidence to guide the survivorship care provision for patients with hematologic malignancies. Treatments for hematologic malignancies are often complex and debilitating, with increased risk of immune suppression and infections1. Some patients receive allogeneic stem cell transplantation that often requires in-patient stay of several weeks and life-long medical follow up. In recent years, advances in treatment regimens, and an aging population saw an increasing number of patients living with a hematologic malignancies or surviving curative therapy.2 The increased use of targeted therapies in hematologic malignancies (e.g. rituximab for non-Hodgkin lymphoma, bortezomib in multiple myeloma and imatinib in Chronic Myelogenous Leukemia has also resulted in improved overall survival...

Perceived safety, quality and cultural competency of maternity care for culturally and linguistically diverse women in Queensland

Various policies, plans, and initiatives have been implemented to provide safe, quality, and culturally competent care to patients within Queensland’s healthcare system. A series of models of maternity care are available in Queensland that range from standard public care to private midwifery care. The current study aimed to determine whether identifying as Culturally or Linguistically Diverse (CALD) was associated with the perceived safety, quality, and cultural competency of maternity care from a consumer perspective, and to identify specific needs and preferences of CALD maternity care consumers. Secondary analysis of data collected in the Having a Baby in Queensland Survey 2012 was used to compare the experiences of 655 CALD women to those of 4049 non-CALD women in Queensland, Australia, across three stages of maternity care: pregnancy, labour and birth, and after birth. After adjustment for model of maternity care received and socio-demographic characteristics, CALD women were significantly more likely than non-CALD women to experience suboptimal staff technical competence in pregnancy, overall perceived safety in pregnancy and labour/birth, and interpersonal sensitivity in pregnancy and labour/birth. Approximately 50% of CALD women did not have the choice to use a translator or interpreter, or the gender of their care provider, during labour and birth. Thirteen themes of preferences and needs of CALD maternity care consumers based on ethnicity, cultural beliefs, or traditions were identified, however, these were rarely met. Findings imply that CALD women in Queensland experience disadvantageous maternity care with regards to perceived staff technical competence, safety, and interpersonal sensitivity, and receive care that lacks cultural competence. Improved access to support persons, continuity and choice of carer, and staff availability and training is recommended.

A tsunami of unmet needs: Pancreatic and ampullary cancer patients’ supportive care needs and use of community and allied health services

Objective People diagnosed with pancreatic cancer have the worst survival prognosis of any cancer. No previous research has documented the supportive care needs of this population. Our objective was to describe people’s needs and use of support services and to examine whether these differed according to whether or not patients had undergone surgical resection. Methods Queensland pancreatic or ampullary cancer patients (n=136, 54% of those eligible) completed a survey which assessed 34 needs across 5 domains (SCNS-SF34) and use of health services. Differences by resection were compared with Chi-squared tests. Results Overall, 96% of participants reported having some needs. More than half reported moderate-to-high unmet physical (54%) or psychological (52%) needs whereas, health system/information (32%), patient care (21%) and sexuality needs (16%) were described less frequently. The three most frequently reported moderate-to-high needs included ‘not being able to do things they used to do’ (41%), ‘concerns about the worries of those close’ (37%), and ‘uncertainty about the future’ (30%). Patients with non-resectable disease reported greater individual information needs but their needs were otherwise similar to patients with resectable disease. Self-reported use of support was low; only 35% accessed information, 28%, 18% and 15% consulted a dietician, complementary medicine practitioner or mental health practitioner, respectively. Palliative care access was greater (59% vs 27%) among those with non-resectable disease. Conclusion Very high levels of needs were reported by people with pancreatic or ampullary cancer. Future work needs to elucidate why uptake of appropriate supportive care is low and which services are required.

Women's perceptions of communication in pregnancy and childbirth: Influences on participation and satisfaction with care

In this study, 3531 Queensland women, who had recently given birth, completed a questionnaire that included questions about their participation in decision making during pregnancy, their ratings of client centred care and perceived quality of care. These data tested a version of Street’s (2001) linguistic model of patient participation in care (LMOPPC), adapted to the maternity context. We investigated how age and education influenced women’s perceptions of their participation and quality of care. Hierarchical multiple regressions revealed that women’s perceived ability to make decisions, and the extent of client-centred communication with maternity care providers were the most influential predictors of participation and perceived quality of care. Participation in care predicted perceived quality of care, but the influence of client-centred communication by a care provider and a woman’s confidence in decision making were stronger predictors of perceived quality of care. Age and education level were not important predictors. These findings extend and support the use of LMOPPC in the maternity context.

Nurses’ views on the implementation of Individualised Medication Administration Guides in patients with dysphagia in care homes

As conditions such as stroke, cancer, Parkinson's disease and Huntingdon's chorea are commonly found in care homes between 15% and 30% of residents in care homes have been found to have difficulties in swallowing their medicines.To address the difficulties associated with administering medicines to patients who cannot swallow (with dysphagia), Individualised Medication Administration Guides (I-MAGs) were introduced by a specialised pharmacist in Care for Elderly wards in a general hospital in East Anglia. The guides contained detailed information about how to administer each medication and they were individualised to the needs of the patient. The I-MAGs were printed in green forms and attached to the medication chart in order to be used in conjunction with it. The ward nurses reported an increase in their confidence when administering medication when I-MAGs were present in the ward. Some patients with I-MAG were discharged to care homes where the I-MAG might have been equally useful. However, the design of such guides is not known to be suitable for care homes environment where they have never been used before. This study aims to explore the opinions of nurses and carers within care homes on the relevance and acceptability of individualised medication administration guides for patients with dysphagia (PWD).

Medicines related dysphagia in primary care: The prevalence of and impact on community pharmacists

Dysphagia is a common and problematic symptom characterised by varying degrees of difficulty swallowing food, fluids and medicines of differing consistencies. International primary care based studies have identified that between 1 in 4 and 1 in 5 patients have some form of dysphagia, it can affect medicines taking behaviour and healthcare professionals are largely unaware of this1,2. Similar research has not been undertaken in the UK. Adherence related pharmacy based services in the UK provide an opportunity for community pharmacists to identify the problem and facilitate better medicines use. The aim of this pilot study was to estimate the level of patient reported dysphagia in older persons using community pharmacies in the UK, describe how it affects their medicine taking behaviour and identify whether advanced pharmacy services are related to improved awareness of this.

The effectiveness of meaningful occupation interventions for people living with dementia in residential aged care: A systematic review protocol

Review questions/objective What is the effectiveness of meaningful occupation interventions for people living with dementia in residential aged care facilities? More specifically, the objectives are to identify: The effectiveness of interventions based on engaging residents of residential aged care facilities who have dementia in meaningful occupation (activities that have meaning for the individual) on: quality of life, behavioral and psychological symptoms of dementia (such as agitation, aggression, depression, wandering, apathy, etc.), mood, function, cognition, and sleep. Inclusion criteria Types of participants This review will consider studies that include participants with a confirmed diagnosis of any type of dementia living in residential aged care facilities / long term care/nursing homes/permanent care. Types of intervention(s)/phenomena of interest This review will consider studies that evaluate non-pharmacological interventions that are based on occupational or activity interventions considered to be meaningful to the person with dementia, and tailoring the intervention to meet their needs, abilities, interests and/or preferences will be required as part of the study’s methodology. Such interventions may include reminiscence therapy, exercise therapy, music therapy, individualized activity, behavioral interventions, recreational therapy, diversional therapy and psychosocial interventions. Trials of combinations of two or more such interventions will also be considered. Interventions may be in comparison to usual care, other meaningful occupation interventions, or any other non-pharmacological control or comparator.