An exploratory study of grief and health-related quality of life for caregivers of people with dementia

The aim of this qualitative study was to explore key positive and negative factors that impact on grief resolution and health outcomes of caregivers who were caring, or had cared, for a family member with dementia who had died. The study was a scoping study and involved face-to-face interviews with these family caregivers (N ¼ 13). Results indicated a complex interaction of issues (many unique to dementia caregiving) which in different combinations acted as protective or risk factors for caregiver outcomes. Interaction of individual characteristics, role appraisal, value of intrinsic and extrinsic resources, and experiences with health professionals during the caregiving period and around the death of their relative were shown to have the most influence on caregiver outcomes. Psychological resilience and satisfaction with caregiving were protective against negative outcomes while unresolved grief was a risk factor. These findings highlight the potential benefits of multicomponent, holistic dementia caregiver interventions.

Self-efficacy partially mediates between social support and health-related quality of life in family caregivers for dementia patients in Shanghai

Background: There is a paucity of research assessing health-related quality of life (HRQoL) and self-efficacy in caregivers of relatives with dementia in mainland China. Aims: To compare the level of HRQoL between caregivers and the general population in mainland China and to assess the role of caregiver self-efficacy in the relationship between caregiver social support and HRQoL. Methods: A cross-sectional study was conducted in Shanghai, China. The caregivers were recruited from the outpatient department of a teaching hospital. A total of 195 participants were interviewed, using a survey package including the Chinese version of the 36-Item Short-Form Health Survey (SF-36), demographic data, the variables associated with the impairments of care recipients, perceived social support and caregiver self-efficacy. The caregivers' SF-36 scores were compared with those of the general population in China. Results: The results indicated that the HRQoL of the caregivers was poorer compared with that of the general population when matched for age and gender. Multiple regression analyses revealed that caregiver self-efficacy is a partial mediator between social support and HRQoL, and a partial mediator between behavioral and psychological symptoms of dementia (BPSD) and caregiver mental health. Conclusion: Assisting with managing BPSD and enhancing caregiver self-efficacy can be considered integral parts of interventions to improve caregiver HRQoL.

A prospective model of care for breast cancer rehabilitation : bone health and arthralgias

Musculoskeletal health can be compromised by breast cancer treatment. In particular, bone loss and arthralgias are prevalent side effects experienced by women treated with chemotherapy and/or adjuvant endocrine therapy. Bone loss leads to osteoporosis and related fractures, while arthralgias threaten quality of life and compliance to treatment. Because the processes that lead to these musculoskeletal problems are initiated when treatment begins, early identification of women who may be at higher risk of developing problems, routine monitoring of bone density and pain at certain stages of treatment, and prudent application of therapeutic interventions are key to preventing and/or minimizing musculoskeletal sequelae. Exercise may be a particularly suitable intervention strategy because of its potential to address a number of impairments; it may slow bone loss, appears to reduce joint pain in noncancer conditions, and improves other breast cancer outcomes. Research efforts continue in the areas of etiology, measurement, and treatment of bone loss and arthralgias. The purpose of this review is to provide an overview of the current knowledge on the management and treatment of bone loss and arthralgias in breast cancer survivors and to present a framework for rehabilitation care to preserve musculoskeletal health in women treated for breast cancer.

Age, physical inactivity, obesity, health conditions, and health-related quality of life among patients receiving conservative management for musculoskeletal disorders

Background Musculoskeletal conditions and insufficient physical activity have substantial personal and economic costs among contemporary aging societies. This study examined the age distribution, comorbid health conditions, body mass index (BMI), self-reported physical activity levels, and health-related quality of life of patients accessing ambulatory hospital clinics for musculoskeletal disorders. The study also investigated whether comorbidity, BMI, and self-reported physical activity were associated with patients’ health-related quality of life after adjusting for age as a potential confounder. Methods A cross-sectional survey was undertaken in three ambulatory hospital clinics for musculoskeletal disorders. Participants (n=224) reported their reason for referral, age, comorbid health conditions, BMI, physical activity levels (Active Australia Survey), and health-related quality of life (EQ-5D). Descriptive statistics and linear modeling were used to examine the associations between age, comorbidity, BMI, intensity and duration of physical activity, and health-related quality of life. Results The majority of patients (n=115, 51.3%) reported two or more comorbidities. In addition to other musculoskeletal conditions, common comorbidities included depression (n=41, 18.3%), hypertension (n=40, 17.9%), and diabetes (n=39, 17.4%). Approximately one-half of participants (n=110, 49.1%) self-reported insufficient physical activity to meet minimum recommended guidelines and 150 (67.0%) were overweight (n=56, 23.2%), obese (n=64, 28.6%), severely obese (n=16, 7.1%), or very severely obese (n=14, 6.3%), with a higher proportion of older patients affected. A generalized linear model indicated that, after adjusting for age, self-reported physical activity was positively associated (z=4.22, P<0.001), and comorbidities were negatively associated (z=-2.67, P<0.01) with patients’ health-related quality of life. Conclusion Older patients were more frequently affected by undesirable clinical attributes of comorbidity, obesity, and physical inactivity. However, findings from this investigation are compelling for the care of patients of all ages. Potential integration of physical activity behavior change or other effective lifestyle interventions into models of care for patients with musculoskeletal disorders is worthy of further investigation.

Evidence of associations between cytokine gene polymorphisms and quality of life in patients with cancer and their family caregivers

PURPOSE/OBJECTIVES: To identify latent classes of individuals with distinct quality-of-life (QOL) trajectories, to evaluate for differences in demographic characteristics between the latent classes, and to evaluate for variations in pro- and anti-inflammatory cytokine genes between the latent classes. DESIGN: Descriptive, longitudinal study. SETTING: Two radiation therapy departments located in a comprehensive cancer center and a community-based oncology program in northern California. SAMPLE: 168 outpatients with prostate, breast, brain, or lung cancer and 85 of their family caregivers (FCs). METHODS: Growth mixture modeling (GMM) was employed to identify latent classes of individuals based on QOL scores measured prior to, during, and for four months following completion of radiation therapy. Single nucleotide polymorphisms (SNPs) and haplotypes in 16 candidate cytokine genes were tested between the latent classes. Logistic regression was used to evaluate the relationships among genotypic and phenotypic characteristics and QOL GMM group membership. MAIN RESEARCH VARIABLES: QOL latent class membership and variations in cytokine genes. FINDINGS: Two latent QOL classes were found: higher and lower. Patients and FCs who were younger, identified with an ethnic minority group, had poorer functional status, or had children living at home were more likely to belong to the lower QOL class. After controlling for significant covariates, between-group differences were found in SNPs in interleukin 1 receptor 2 (IL1R2) and nuclear factor kappa beta 2 (NFKB2). For IL1R2, carrying one or two doses of the rare C allele was associated with decreased odds of belonging to the lower QOL class. For NFKB2, carriers with two doses of the rare G allele were more likely to belong to the lower QOL class. CONCLUSIONS: Unique genetic markers in cytokine genes may partially explain interindividual variability in QOL. IMPLICATIONS FOR NURSING: Determination of high-risk characteristics and unique genetic markers would allow for earlier identification of patients with cancer and FCs at higher risk for poorer QOL. Knowledge of these risk factors could assist in the development of more targeted clinical or supportive care interventions for those identified.

What women want : qualitative analysis of consumer evaluations of maternity care in Queensland, Australia

Background Maternity care reform plans have been proposed at state and national levels in Australia, but the extent to which these respond to maternity care consumers’ expressed needs is unclear. This study examines open-text survey comments to identify women’s unmet needs and priorities for maternity care. It is then considered whether these needs and priorities are addressed in current reform plans. Methods Women who had a live single or multiple birth in Queensland, Australia, in 2010 (n 3,635) were invited to complete a retrospective self-report survey. In addition to questions about clinical and interpersonal maternity care experiences from pregnancy to postpartum, women were asked an open-ended question “Is there anything else you’d like to tell us about having your baby?” This paper describes a detailed thematic analysis of open-ended responses from a random selection of 150 women (10% of 1,510 who responded to the question). Results Four broad themes emerged relevant to improving women’s experiences of maternity care: quality of care (interpersonal and technical); access to choices and involvement in decision-making; unmet information needs; and dissatisfaction with the care environment. Some of these topics are reflected in current reform goals, while others provide evidence of the need for further reforms. Conclusions The findings reinforce the importance of some existing maternity reform objectives, and describe how these might best be met. Findings affirm the importance of information provision to enable informed choices; a goal of Queensland and national reform agendas. Improvement opportunities not currently specified in reform agendas were also identified, including the quality of interpersonal relationships between women and staff, particular unmet information needs (e.g., breastfeeding), and concerns regarding the care environment (e.g., crowding and long waiting times).

Health Information Exchange in the wake of ‘big data’ paradigm – the theme is from ‘quality of information to quality of life’

Health Information Exchange (HIE) is an interesting phenomenon. It is a patient centric health and/or medical information management scenario enhanced by integration of Information and Communication Technologies (ICT). While health information systems are repositioning complex system directives, in the wake of the ‘big data’ paradigm, extracting quality information is challenging. It is anticipated that in this talk, ICT enabled healthcare scenarios with big data analytics will be shared. In addition, research and development regarding big data analytics, such as current trends of using these technologies for health care services and critical research challenges when extracting quality of information to improve quality of life will be discussed.

Improved nutritional status is related to improved quality of life in Parkinson’s disease

Background: Quality of life is poorer in Parkinson’s disease than in other conditions and in the general population without Parkinson’s disease. Malnutrition also results in poorer quality of life. This study aimed at determining the relationship between quality of life and nutritional status. Methods: Community-dwelling people with Parkinson’s disease >18 years old were recruited. The Patient-Generated Subjective Global Assessment (PG-SGA) assessed nutritional status. The Parkinson’s Disease Questionnaire 39 (PDQ-39) measured quality of life. Phase I was cross-sectional. The malnourished in Phase I were eligible for a nutrition intervention phase, randomised into 2 groups: standard care (SC) with provision of nutrition education materials only and intervention (INT) with individualised dietetic advice and regular weekly follow-up. Data were collected at baseline, 6 weeks, and 12 weeks. Results: Phase I consisted of 120 people who completed the PDQ-39. Phase II consisted of 9 in the SC group and 10 in the INT group. In Phase I, quality of life was poorer in the malnourished, particularly for mobility and activities of daily living domains. There was a significant correlation between PG-SGA and PDQ-39 scores (Phase I, rs = 0.445, p = .000; Phase II, rs = .426, p = .002). In Phase II, no significant difference in the PDQ-39 total or sub-scores was observed between the INT and SC groups; however, there was significant improvement in the emotional well-being domain for the entire group, X2(2) = 8.84, p = .012. Conclusions: Malnourished people with Parkinson’s disease had poorer quality of life than the well-nourished, and improvements in nutritional status resulted in quality of life improvements. Attention to nutritional status is an important component of quality of life and therefore the total care of people with Parkinson’s disease.

Development of an education program to improve care of patients with dementia in an acute care setting

As the population ages, the number of people with dementia in acute care environments is projected to increase rapidly. However, many acute care nurses have undertaken little or no dementia training, potentially leading to reduced quality of care for these patients. This article details the development and delivery of a tailored education program to improve the quality of care of people with dementia in a large, urban hospital in Australia. Designed specifically for the existing context, environment and knowledge levels, the program was developed from multiple inputs, including: expert opinion, literature on workplace and dementia care training, and feedback from participants. The program was delivered to acute care nurses and allied health staff within an outcome based, microteaching model. The broader applicability of the development and delivery techniques used in this program is also discussed.

A multimodal physiotherapy programme plus deep water running for improving cancer-related fatigue and quality of life in breast cancer survivors

The aim of the study was to assess the feasibility and effectiveness of aquatic‐based exercise in the form of deep water running ( DWR ) as part of a multimodal physiotherapy programme ( MMPP ) for breast cancer survivors. A controlled clinical trial was conducted in 42 primary breast cancer survivors recruited from community‐based P rimary C are C entres. Patients in the experimental group received a MMPP incorporating DWR , 3 times a week, for an 8‐week period. The control group received a leaflet containing instructions to continue with normal activities. Statistically significant improvements and intergroup effect size were found for the experimental group for P iper F atigue S cale‐ R evised total score ( d = 0.7, P = 0.001), as well as behavioural/severity ( d = 0.6, P = 0.05), affective/meaning ( d = 1.0, P = 0.001) and sensory ( d = 0.3, P = 0.03) domains. Statistically significant differences between the experimental and control groups were also found for general health ( d = 0.5, P < 0.05) and quality of life ( d = 1.3, P < 0.05). All participants attended over 80% of sessions, with no major adverse events reported. The results of this study suggest MMPP incorporating DWR decreases cancer‐related fatigue and improves general health and quality of life in breast cancer survivors. Further, the high level of adherence and lack of adverse events indicate such a programme is safe and feasible.

A call for better care: the impact of postnatal contact services on women’s parenting confidence and experiences of postpartum care in Queensland, Australia

Background Universal postnatal contact services are provided in several Australian states, but their impact on women’s postnatal care experience has not been evaluated. Furthermore, there is lack of evidence or consensus about the optimal type and amount of postpartum care after hospital discharge for maternal outcomes. This study aimed to assess the impact of providing Universal Postnatal Contact Service (UPNCS) funding to public birthing facilities in Queensland, Australia on women’s postnatal care experiences, and associations between amount and type (telephone or home visits) of contact on parenting confidence, and perceived sufficiency and quality of postnatal care. Methods Data collected via retrospective survey of postnatal women (N = 3,724) were used to compare women who birthed in UPNCS-funded and non-UPNCS-funded facilities on parenting confidence, sufficiency of postnatal care, and perceived quality of postnatal care. Associations between receiving telephone and home visits and the same outcomes, regardless of UPNCS funding, were also assessed. Results Women who birthed in an UPNCS-funded facility were more likely to receive postnatal contact, but UPNCS funding was not associated with parenting confidence, or perceived sufficiency or perceived quality of care. Telephone contact was not associated with parenting confidence but had a positive dose–response association with perceived sufficiency and quality. Home visits were negatively associated with parenting confidence when 3 or more were received, had a positive dose–response association with perceived sufficiency and were positively associated with perceived quality when at least 6 were received. Conclusions Funding for UPNCS is unlikely to improve population levels of maternal parenting confidence, perceived sufficiency or quality of postpartum care. Where only minimal contact can be provided, telephone may be more effective than home visits for improving women’s perceived sufficiency and quality of care. Additional service initiatives may be needed to improve women’s parenting confidence.

An individual-based versus group-based exercise and counselling intervention for improving quality of life in breast cancer survivors. A feasibility and efficacy study

Background Cancer and its treatments produce lingering side-effects that undermine the quality of life (QOL) of survivors. Exercise and psycho-therapies increase QOL among survivors, however, research is needed to identify intervention characteristics most associated with such improvements. Objective This research aimed to assess the feasibility of a 9 week individual or group based exercise and counselling program, and to examine if a group based intervention is as effective at improving the QOL of breast cancer survivors as an individual-based intervention. Methods A three group design was implemented to compare the efficacy of a 9 week individual (IEC n = 12) and group based exercise and counselling (GEC n = 14) intervention to a usual care (UsC n = 10) group on QOL of thirty-six breast cancer survivors. Results Across all groups, 90% of participants completed the interventions, with no adverse effects documented. At the completion of the intervention, there was a significant difference between groups for change in global QOL across time (p < 0.023), with IEC improving significantly more (15.0 points) than the UsC group (1.8 points). The effect size was moderate (0.70). Although the GEC improved QOL by almost 10.0 points, this increase did not reach significance. Both increases were above the minimally important difference of 7–8 points. Conclusion These preliminary results suggest a combined exercise and psychological counseling program is both a feasible and acceptable intervention for breast cancer survivors. Whilst both the individual and group interventions improved QOL above the clinically important difference, only the individual based intervention was significant when compared to UsC.

Can counseling add value to an exercise intervention for improving quality of life in breast cancer survivors? A feasibility study

Background: Improved survivorship has led to increased recognition of the need to manage the side effects of cancer and its treatment. Exercise and psychological interventions benefit survivors; however, it is unknown if additional benefits can be gained by combining these two modalities. Objective: Our purpose was to examine the feasibility of delivering an exercise and counseling intervention to 43 breast cancer survivors, to determine if counseling can add value to an exercise intervention for improving quality of life (QOL) in terms of physical and psychological function. Methods: We compared exercise only (Ex), counseling only (C), exercise and counseling (ExC), and usual care (UsC) over an 8 week intervention. Results: In all, 93% of participants completed the interventions, with no adverse effects documented. There were significant improvements in VO2max as well as upper body and lower body strength in the ExC and Ex groups compared to the C and UsC groups (P < .05). Significant improvements on the Beck Depression Inventory were observed in the ExC and Ex groups, compared with UsC (P < .04), with significant reduction in fatigue for the ExC group, compared with UsC, and no significant differences in QOL change between groups, although the ExC group had significant clinical improvement. Limitations: Limitations included small subject number and study of only breast cancer survivors. Conclusions: These preliminary results suggest that a combined exercise and psychological counseling program is both feasible and acceptable for breast cancer survivors and may improve QOL more than would a single-entity intervention.

Quality of discharge summaries sent by a regional hospital to general practitioners

Background A comprehensive hospital discharge summary sent to the patient's general practitioner in a timely manner can ease patient transition between care settings. Aim To investigate the quality of discharge summaries sent by a regional hospital to GPs; and to evaluate GPs' satisfaction with the medication list contained in the discharge summary. Method A questionnaire was mailed to a sample of 80 Gold Coast GPs who had made more than five referrals to the Gold Coast Hospital during June 2009. Results 18 responses (23% response rate) were received from September to October 2009. The majority (67%) of GPs received discharge summaries from the hospital and they were mostly in an electronic format with attached medication lists. The reasons for changing medications were not well explained and the timeframe for receiving summaries was considered unsatisfactory. Overall, the majority of GPs were satisfied with the quality of the discharge summaries. Conclusion GPs mostly received the discharge summaries and the majority received them electronically. The majority of GPs indicated that the medication lists were often attached to the discharge summaries and changes to medications recorded.

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.