The quality of life and caregiving burden among caregivers of people with dementia in Hanoi, Bac Ninh and Hai Phong, Vietnam

This three phase study aimed to describe dementia carer's quality of life (QoL) and perceived burden, and explore the associations between family carer characteristics, burden and perceived QoL in Vietnam. Dementia carers in the capital, Hanoi, in Phase 1 (N= 153) and from Hanoi, Hai Phong and Bac Ninh in Phase 2 (N=347) completed questionnaires. Survey results showed dementia carers reported low QoL, predicted by high perceived burden. Other carer characteristics including age, gender, family income and perceived experience were significantly associated with QoL. Filial piety contributed to only a single domain of QoL. Phase 3 employed qualitative methods to explore the specific issues faced by daughter carers. Findings suggested that filial gratitude and positive aspects of the role may influence the caring experience of daughter carers. Further investigation of the specific support needs of general dementia carers, and daughter carers in particular, in Vietnam is warranted.

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.

The role of affect in consumer evaluation of health care services

Health care services are typically consumed out of necessity, typically to recover from illness. While the consumption of health care services can be emotional given that consumers experience fear, hope, relief, and joy, surprisingly, there is little research on the role of consumer affect in health care consumption. We propose that consumer affect is a heuristic cue that drives evaluation of health care services. Drawing from cognitive appraisal theory and affect-as-information theory, this article tests a research model (N = 492) that investigates consumer affect resulting from service performance on subsequent service outcomes.

Health-related quality of life of individuals with transfemoral amputation fitted with the Transcutaneous Bone Anchoring Prosthesis following the OGAAP

The benefits and safety transcutaneous bone anchored prosthesis relying on a screw fixation are well reported. However, most of the studies on press-fit implants and joint replacement technology have focused on surgical techniques. One European centre using this technique has reported on health-related quality of life (HRQOL) for a group of individuals with transfemoral amputation (TFA). Data from other centres are needed to assess the effectiveness of the technique in different settings. The aim of this study is to report HRQOL data at baseline and up to 2-year follow-up for a group of TFAs treated by Osseointegration Group of Australia who followed the Osseointegration Group of Australia Accelerated Protocol (OGAAP), in Sydney between 08/12/2011 and 09/04/2014.

Association between single-nucleotide polymorphisms in growth factor genes and quality of life in men with prostate cancer and the general population

Purpose Improved survival for men with prostate cancer has led to increased attention to factors influencing quality of life (QOL). As protein levels of vascular endothelial growth factor (VEGF) and insulin-like growth factor 1 (IGF-1) have been reported to be associated with QOL in people with cancer, we sought to identify whether single-nucleotide polymorphisms (SNPs) of these genes were associated with QOL in men with prostate cancer. Methods Multiple linear regression of two data sets (including approximately 750 men newly diagnosed with prostate cancer and 550 men from the general population) was used to investigate SNPs of VEGF and IGF-1 (10 SNPs in total) for associations with QOL (measured by the SF-36v2 health survey). Results Men with prostate cancer who carried the minor ‘T’ allele for IGF-1 SNP rs35767 had higher mean Role-Physical scale scores (≥0.3 SD) compared to non-carriers (p < 0.05). While this association was not identified in men from the general population, one IGF-1 SNP rs7965399 was associated with higher mean Bodily Pain scale scores in men from the general population that was not found in men with prostate cancer. Men from the general population who carried the rare ‘C’ allele had higher mean Bodily Pain scale scores (≥0.3 SD) than non-carriers (p < 0.05). Conclusions Through identifying SNPs that are associated with QOL in men with prostate cancer and men from the general population, this study adds to the mapping of complex interrelationships that influence QOL and suggests a role for IGF-I in physical QOL outcomes. Future research may identify biomarkers associated with increased risk of poor QOL that could assist in the provision of pre-emptive support for those identified at risk.

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.

Beyond survivorship? A discursive analysis of how people with pancreatic cancer negotiate identity transitions in their health

We explored how people negotiate, and respond to, identity transitions following a diagnosis of pancreatic cancer. Interviews with 19 people with pancreatic cancer were analysed using thematic discourse analysis. While discursively negotiating two transitions, “moving from healthy to ill” and “moving from active treatment to end-of-life care”, participants positioned themselves as “in control”, “optimistic” and managing their health and illness. In the absence of other discourses or “models” of life post-cancer, many people draw on the promise of survival. Moving away from “survivorship” may assist people with advanced cancer to make sense of their lives in a short timeframe.

Identifying relationships between symptom clusters and quality of life in adults with chronic mixed venous and arterial leg ulcers

The objective of this study was to identify symptom clusters and their effect on quality of life (QOL) of adults with chronic leg ulcers of mixed venous and arterial aetiology. A secondary analysis of data from four existing prospective longitudinal studies conducted by a wound healing research group in Australia was undertaken. A total of 110 patients who met the inclusion criteria were selected for this study. Exploratory factor analysis (EFA) was used to identify symptom clusters and correlational analyses to examine relationships between the identified symptom clusters and QOL. The EFA identified two distinct symptom clusters: a 'systemic symptom cluster' consisting of pain, fatigue and depressive symptoms; and a 'localised-leg symptom cluster' including pain, fatigue, oedema, lower limb inflammation and exudate. Physical QOL correlated significantly with the systemic symptom cluster (r = -0·055, P < 0·0001) and the localised-leg symptom cluster (r = -0·054, P < 0·0001), whereas mental QOL was associated only with the systemic symptom cluster (r = -0·038, P = 0·01). The results suggest that appropriate intervention strategies targeting specific symptom clusters should be developed. Targeting patients with symptom clusters is particularly important because they are at high risk and the most vulnerable for reduced QOL.

Quality of life and caregiver outcomes following decompressive hemicraniectomy for severe stroke: A narrative literature review

AIMS The aim of this narrative review of the literature was to examine the current state of knowledge regarding the impact of aggressive surgical interventions for severe stroke on patient and caregiver quality of life and caregiver outcomes. BACKGROUND Decompressive hemicraniectomy (DHC) is a surgical therapeutic option for treatment of massive middle cerebral artery infarction (MCA), lobar intracerebral hemorrhage (ICH), and severe aneurysmal subarachnoid hemorrhage (aSAH). Decompressive hemicraniectomy has been shown to be effective in reducing mortality in these three life-threatening conditions. Significant functional impairment is an experience common to many severe stroke survivors worldwide and close relatives experience decision-making difficulty when confronted with making life or death choices related to surgical intervention for severe stroke. DATA SOURCES Academic Search Premier, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medline, and PsychInfo. REVIEW METHODS A narrative review methodology was utilized in this review of the literature related to long-term outcomes following decompressive hemicraniectomy for stroke. The key words decompressive hemicraniectomy, severe stroke, middle cerebral artery stroke, subarachnoid hemorrhage, lobar ICH, intracerebral hemorrhage, quality of life, and caregivers, literature review were combined to search the databases. RESULTS Good functional outcomes following DHC for life-threatening stroke have been shown to be associated with younger age and few co-morbid conditions. It was also apparent that quality of life was reduced for many stroke survivors, although not assessed routinely in studies. Caregiver burden has not been systematically studied in this population. CONCLUSION Most patients and caregivers in the studies reviewed agreed with the original decision to undergo DHC and would make the same decision again. However, little is known about quality of life for both patients and caregivers and caregiver burden over the long-term post-surgery. Further research is needed to generate information and interventions for the management of ongoing patient and carer recovery following DHC for severe stroke.

The organisational context of nursing care in stroke units: A case study approach

Background Internationally the stroke unit is recognised as the evidence-based model for patient management, although clarity about the effective components of stroke units is lacking. Whilst skilled nursing care has been proposed as one component, the theoretical and empirical basis for stroke nursing is limited. We attempted to explore the organisational context of stroke unit nursing, to determine those features that staff perceived to be important in facilitating high quality care. Design A case study approach was used, that included interviews with nurses and members of the multidisciplinary teams in two Canadian acute stroke units. A total of 20 interviews were completed, transcribed and analysed thematically using the Framework Approach. Trustworthiness was established through the review of themes and their interpretation by members of the stroke units. Findings Nine themes that comprised an organisational context that supported the delivery of high quality nursing care in acute stroke units were identified, and provide a framework for organisational development. The study highlighted the importance of an overarching service model to guide the organisation of care and the development of specialist and advanced nursing roles. Whilst multidisciplinary working appears to be a key component of stroke unit nursing, various organisational challenges to its successful implementation were highlighted. In particular the consequence of differences in the therapeutic approach of nurses and therapy staff needs to be explored in greater depth. Successful teamwork appears to depend on opportunities for the development of relationships between team members as much as the use of formal communication systems and structures. A co-ordinated approach to education and training, clinical leadership, a commitment to research, and opportunities for role and practice development also appear to be key organisational features of stroke unit nursing. Recommendations for the development of stroke nursing leadership and future research into teamwork in stroke settings are made.

Changes in disability, physical/mental health states and quality of life during an 8-Week multimodal physiotherapy programme in patients with chronic non-specific neck pain: A prospective cohort study

Aim The aim of this study was to analyse the effect of an 8-week multimodal physiotherapy programme (MPP), integrating physical land-based therapeutic exercise (TE), adapted swimming and health education, as a treatment for patients with chronic non-specific neck pain (CNSNP), on disability, general health/mental states and quality of life. Methods 175 CNSNP patients from a community-based centre were recruited to participate in this prospective study. Intervention: 60-minute session (30 minutes of land-based exercise dedicated to improving mobility, motor control, resistance and strengthening of the neck muscles, and 30 minutes of adapted swimming with aerobic exercise keeping a neutral neck position using a snorkel). Health education was provided using a decalogue on CNSNP and constant repetition of brief advice by the physiotherapist during the supervision of the exercises in each session. Study outcomes: primary: disability (Neck Disability Index); secondary: physical and mental health states and quality of life of patients (SF-12 and EuroQoL-5D respectively). Differences between baseline data and that at the 8-week follow-up were calculated for all outcome variables. Results Disability showed a significant improvement of 24.6% from a mean (SD) of 28.2 (13.08) at baseline to 16.88 (11.62) at the end of the 8-week intervention. All secondary outcome variables were observed to show significant, clinically relevant improvements with increase ranges between 13.0% and 16.3% from a mean of 0.70 (0.2) at baseline to 0.83 (0.2), for EuroQoL-5D, and from a mean of 40.6 (12.7) at baseline to 56.9 (9.5), for mental health state, at the end of the 8-week intervention. Conclusion After 8 weeks of a MPP that integrated land-based physical TE, health education and adapted swimming, clinically-relevant and statistically-significant improvements were observed for disability, physical and mental health states and quality of life in patients who suffer CNSNP. The clinical efficacy requires verification using a randomised controlled study design.

The impact of personality and workplace belongingness on mental health workers’ professional quality of life

Objectives Mental health workers are constantly exposed to their clients’ stories of distress and trauma. While listening to these stories can be emotionally draining, professionals in this field still derive pleasure from their work. This study examined the role of personality and workplace belongingness in predicting compassion satisfaction, secondary traumatic stress, and burnout in mental health professionals. Methods Mental health staff (N = 156) working in a counselling service completed a questionnaire that included measures relating to professional quality of life, the Five-Factor Model of personality, workplace belongingness, as well as questions relating to the participants’ demographic profile, work roles and trauma history. Results The results indicated that, high levels of emotional stability (low neuroticism), extraversion, agreeableness, conscientiousness, and being connected at work, are essential factors that promote the professional quality of life of mental health workers. Specifically, workplace belongingness was the strongest predictor of compassion satisfaction and low levels of burnout, while neuroticism was the strongest predictor of secondary traumatic stress. Conclusions Important implications from this study include: (1) encouraging mental health staff to increase self-awareness of their dispositional characteristics and how their personalities affect their wellbeing at work, and; (2) encouraging management to facilitate practices where mental health workers feel connected, respected, and supported in their organisation.

Optimal management of the critically Ill: Anaesthesia, monitoring, data capture, and point-of-care technological practices in ovine models of critical care

Animal models of critical illness are vital in biomedical research. They provide possibilities for the investigation of pathophysiological processes that may not otherwise be possible in humans. In order to be clinically applicable, the model should simulate the critical care situation realistically, including anaesthesia, monitoring, sampling, utilising appropriate personnel skill mix, and therapeutic interventions. There are limited data documenting the constitution of ideal technologically advanced large animal critical care practices and all the processes of the animal model. In this paper, we describe the procedure of animal preparation, anaesthesia induction and maintenance, physiologic monitoring, data capture, point-of-care technology, and animal aftercare that has been successfully used to study several novel ovine models of critical illness. The relevant investigations are on respiratory failure due to smoke inhalation, transfusion related acute lung injury, endotoxin-induced proteogenomic alterations, haemorrhagic shock, septic shock, brain death, cerebral microcirculation, and artificial heart studies. We have demonstrated the functionality of monitoring practices during anaesthesia required to provide a platform for undertaking systematic investigations in complex ovine models of critical illness.

Health-related quality of life of individuals with transfemoral amputation fitted with the Transcutaneous Bone Anchoring Prosthesis following the OGAAP

Background The benefits and safety transcutaneous bone anchored prosthesis relying on a screw fixation are well reported.[1-17] However, most of the studies on press-fit implants and joint replacement technology have focused on surgical techniques.[3, 18-23] One European centre using this technique has reported on health related quality of life (HRQOL) for a group of individuals with transfemoral amputation (TFA).[3] Data from other centres are needed to assess the effectiveness of the technique in different settings. Aim This study aimed at reporting HRQOL data at baseline and up to 2-year follow-up for a group of TFAs treated by Osseointegration Group of Australia who followed the Osseointegration Group of Australia Accelerated Protocol (OGAAP), in Sydney between 08/12/2011 and 09/04/2014. Method A total of 16 TFAs (7 females and 9 males, age 51 ± 12 y, height 1.73 ± 0.12 m, weight 83 ±18 kg) participated in this study. The cause of amputation was trauma or congenital limb deficiency for 11 (69%) and 5 (31%) participants, respectively. A total of 12 (75%) participants were prosthetic users while 4(25%) were wheelchair bound prior the surgery. The HRQOL were obtained from Questionnaire for Persons with Transfemoral Amputation (Q-TFA) using the four main scales (i.e., Prosthetic use, Mobility, Problem, Global) one year before and between 6.5 and 24 months after the Stage 1 of the surgeries for the baseline and follow-up, respectively. Results The lapse of time before and after Stage 1 was -6.19±3.54 and 10.83±3.58 months respectively. The raw score and percentage of improvement are presented in Figures 1 and 2, respectively. Discussion & Conclusion The average results demonstrated an improvement in each domain, particularly in the reduction of problems and an increase in global state. Furthermore, 56%, 75%, 94% and 69% of the participants reported an improvement in Prosthetic use, Mobility, Problem, Global scales, respectively. These results were comparable to previous studies relying of screwed fixation confirming that press-fit implantation is a viable alternative for bone-anchored prostheses.[1, 7, 8]

The positioning of palliative care in acute care: A multiperspective qualitative study in the context of metastatic melanoma

Objective: The positioning and meaning of palliative care within the healthcare system lacks clarity which adds a level of complexity to the process of transition to palliative care. This study explores the transition to the palliative care process in the acute care context of metastatic melanoma. Method: A theoretical framework drawing on interpretive and critical traditions informs this research. The pragmatism of symbolic interactionism and the critical theory of Habermas brought a broad orientation to the research. Integration of the theoretical framework and grounded-theory methods facilitated data generation and analysis of 29 interviews with patients, family carers, and healthcare professionals. Results: The key analytical findings depict a scope of palliative care that was uncertain for users of the system and for those working within the system. Becoming “palliative” is not a defined event; nor is there unanimity around referral to a palliative care service. As such, ambiguity and tension contribute to the difficulties involved in negotiating the transition to palliative care. Significance of Results: Our findings point to uncertainty around the scopes of practice in the transition to palliative care. The challenge in the transition process lies in achieving greater coherency of care within an increasingly specialized healthcare system. The findings may not only inform those within a metastatic melanoma context but may contribute more broadly to palliative practices within the acute care setting.