The experience of Australian aged care workers during a trial implementation of a palliative care outcomes programme.

End of life care is an essential part of the role of Australian aged care homes (ACHs). However, there is no national framework to support aged care staff in systematically identifying residents with palliative care needs or to routinely assess, respond to, and measure end of life needs. The Palliative Care Outcomes Collaboration (PCOC) is a national outcomes and benchmarking programme which aims to systematically improve palliative care for people who are approaching the end of life, and for their families and carers. The PCOC Wicking Model for Residential Aged Care was developed and piloted in four Australian ACHs. This paper reports on the qualitative findings from semi-structured interviews and focus groups conducted with ACH staff (N = 37) to examine feasibility. Thematic analysis identified three overarching themes about the pilot: (i) processes to successfully prepare and support ACHs; (ii) appropriateness of PCOC tools for the ACH setting; and (iii) realised and potential benefits of the model for ACHs. The lessons presented valuable insights to refine the PCOC Wicking Model and enrich understanding of the potential challenges and solutions for implementing similar programs within ACHs in future. The results suggest that key to successfully preparing ACHs for implementation of the PCOC Wicking Model is an authentic and well-paced collaborative approach with ACHs to ensure the resources, structures and systems are in place and appropriate for the setting. The PCOC Wicking Model for Residential Aged Care is a promising prototype to support ACHs in improving palliative and end of life care outcomes for residents and their carers.

A Qualitative Study Exploring the Benefits and Challenges of Implementing Client Centred Care (CCC) in an Alcohol and Other Drug Treatment Service.

Objective: Client centered care (CCC) is strongly advocated for improving the quality of health care. The aim of the current study was to explore client and staff perspectives of a new model of CCC implemented in a residential alcohol and other drug (AOD) treatment service. Specifically, the study aimed to (i) describe the defining features of CCC, and (ii) describe the benefits and challenges of implementing CCC at the service. Methods: Participants were 18 clients and eight staff who took part in focus groups and interviews. Thematic analysis of four client focus groups and eight staff individual interviews was conducted. Results: Staff identified the defining features of CCC as flexible, comprehensive, open-minded, and inclusive. Clients and staff shared predominantly positive views on the CCC model. Shared themes included the challenge of balancing flexibility and structure, and delivering comprehensive and individualized care within the limits of staff knowledge, skills, and resources. Conclusions: Results suggest that implementing CCC across an AOD treatment setting has clear benefits to staff and clients, along with challenges that require careful consideration and planning. Future research should evaluate the effectiveness of providing guidelines that address many of the challenges associated with implementing CCC.

Using Intervention Mapping to Develop an Education and Career Support Service for Adolescents and Young Adults Diagnosed with Cancer: Identification of the Contextual Factors That Influence Participation in Education and Employment.

Adolescents and young adults (AYAs) diagnosed with cancer experience disrupted engagement in education and employment, which can have profound and long-term impacts on their quality of life. It is therefore vital to offer AYAs access to tailored, evidence-based services to help them to achieve their education and employment goals. However, few such services exist for this population. This paper presents the results from the first step in developing an education and career support service for AYAs diagnosed with cancer using Intervention Mapping. This first step involved developing a logic model that describes the influences of health and demographic factors, individual determinants, behaviours, and environmental conditions on AYA participation in education or employment. The logic model was developed by integrating data from an integrative literature review; cross-sectional survey of AYA clients of a community-based organisation; and feedback from a planning group of stakeholders. It is a valuable framework that will be used to direct the focus of the education and career support service for AYAs diagnosed with cancer. More broadly, the logic model has implications for guiding clinical, service, research, and policy improvements for AYA education, employment, and career support, with the aim of improving AYA quality of life.

Routine outcome measurement in specialist non-government alcohol and other drug treatment services: Establishing effectiveness indicators for the NADAbase.

INTRODUCTION AND AIMS: The collection of routine outcome measurement (ROM) data provides an opportunity for service providers to conduct benchmarking to inform quality assurance practices. To conduct comparative benchmarking, it is important that services have access to comparative data. This paper aims to establish effectiveness indicators for ROM data collected within the alcohol and other drug (AOD) sector. DESIGN AND METHODS: ROM data were collected by specialist non-government AOD treatment services within the Network of Alcohol and other Drugs Agencies online database (i.e. NADAbase). All participants were attending treatment within New South Wales, Australia (N = 21 572). Effectiveness indicators were calculated by using effect sizes, standard error of measurement, and rates of reliable and clinically significant change. The study focused on quality of life (EUROHIS Quality of Life Scale), psychological distress (Kessler-10) and substance dependence (Substance Dependence Scale). RESULTS: Since 2010, 21 572 unique people have completed at least one NADAbase Client Outcome Measure. Amphetamines (36%) and alcohol (32%) were the most commonly reported primary substances of concern. Effectiveness indicators were established for the total sample, as well as for people attending residential rehabilitation (n = 8161) and community-based (n = 10 306) treatment services. Standard error of measurement was the least stringent effectiveness indicator (i.e. a higher proportion of people demonstrated improvement), while the clinically significant change was the most stringent approach. DISCUSSION AND CONCLUSIONS: The study demonstrated the utility of the NADAbase to establish effectiveness indicators for benchmarking purposes. Recommendations are provided for the use of benchmarking to inform quality assurance activities in the sector.

Feasibility randomised controlled trial of a self-help acceptance and commitment therapy intervention for grief and psychological distress in carers of palliative care patients.

We tested the feasibility and preliminary effectiveness of an acceptance and commitment therapy self-help intervention for grief and psychological distress in carers of patients in palliative care. Carers were randomised to the control group, which received treatment as usual, or the intervention group, which received treatment as usual plus an acceptance and commitment therapy-based self-help booklet and telephone support call. Questionnaires were completed at baseline, 1-month post-allocation and 6 months post-loss. Results indicated that the intervention was generally feasible and viewed as acceptable to carers. Preliminary effectiveness analyses showed at least a small effect in acceptance, valued-living, grief and psychological distress.

The relationship between patient-centered care and outcomes in specialist drug and alcohol treatment: A systematic literature review.

Background: Patient-centered care is strongly advocated as a key for improving the quality of healthcare. Research examining the impact of patient-centered care in healthcare has concluded that there are demonstrable albeit inconsistent relationships between patient experience, quality of care, and healthcare outcomes. Knowledge of the impact of patient-centered care in the treatment of substance use disorder is limited. The aim of this review was to assess relationships between indicators of patient-centered care (satisfaction and patient-reported experience measures) and patient outcomes (substance use, psychological wellbeing, and service use) among people attending treatment for substance use disorder. Methods: A systematic electronic literature search of a range of databases was conducted with variations of the search terms 'patient-centered care', 'substance use disorders', and residential or community specialist 'treatment'. The populations, interventions and outcomes were summarized and described according to the PRISMA statement. Results: A total of 25 articles were identified, of which only five included a patient-centered indicator other than satisfaction. Indicators of patient-centered care showed a generally positive association with improved outcomes, particularly between satisfaction with treatment and substance use. Nonetheless, mixed and contradictory results were not uncommon, more so for psychological wellbeing outcomes. Conclusions: There were demonstrable relationships between patient-centered indicators and outcomes for people receiving treatment for substance use disorder. However, conclusions are limited due to underrepresentation of patient-reported experience measures. Further research in the area is needed involving comparisons of patient centered indicators with outcomes and use of patient-reported experience measures together with satisfaction. Registration number: CRD42018092829.

An acceptance and commitment therapy self-help intervention for carers of patients in palliative care: Protocol of a feasibility randomised controlled trial.

Undertaking a caregiving role at end of life can have enduring psychological consequences for carers, including poor adjustment in bereavement. Acceptance and commitment therapy-based interventions have demonstrated effectiveness in helping people cope with a range of life challenges. This article presents the protocol of a feasibility randomised controlled trial of an acceptance and commitment therapy self-help intervention for psychological distress and grief in carers of patients in palliative care. We will assess feasibility and acceptability of the trial procedures and intervention as well as preliminary effectiveness of the intervention on carer well-being outcomes.

Parental perceptions of barriers to mental health services for young people.

AIM: This study explores a range of barriers that parents encountered in accessing mental health services. The study also explored whether parents experienced similar barriers to accessing services in 2003 and 2013. METHODS: One hundred and thirty-four parents of young people attending an initial assessment at a Child and Adolescent Mental Health Service (CAMHS) or headspace centre completed a questionnaire assessing 10 general barriers to care. These data were compared to those collected from 129 participants at CAMHS in 2003. RESULTS: The ranking of barriers to mental health care for their children was similar for both survey years, with 'wait time being too long' and 'help being too expensive' the two highest ranked barriers. Cost factors were related to not knowing that the services did not charge fees and having to take time off work to attend appointments. Multiple referral steps and uncertain wait times were the main concerns regarding wait times. The overall strength with which barriers were endorsed remained relatively low; however, at least 40% of the sample agreed they had experienced four of the barriers in both years. CONCLUSIONS: Despite relatively low endorsement of barriers, there are substantial proportions of parents who experienced some barriers to services, and services should continue working to reduce them to facilitate timely access. There is a particular need for more service-related information to clarify that public sector mental health services do not charge fees. Methods such as rapid initial assessment and actively managing wait lists may go some way to reducing perceived wait time barriers.

Are carer attitudes toward medications related to self-reported medication adherence amongst people with mental illness?

Medication nonadherence among consumers with psychiatric disorders can significantly affect the health and wellbeing of the consumer and their family. Previous research has suggested that carers have an impact on consumer attitudes toward medication and adherence. Yet, how carer attitudes toward medication may be related to consumer attitudes and adherence has received little investigation. This exploratory study aimed to investigate the relationships between carer and consumer attitudes toward medication and consumer adherence behaviour. A cross-sectional survey assessing consumer and carer attitudes toward medication and consumer adherence was conducted amongst 42 consumer-carer dyads. Correlation analyses showed a positive association between consumer and carer attitudes toward medication and between consumer and carer attitudes with adherence. There was a general indication that the greater the difference between consumer and carer attitudes, the lower the level of adherence. Regression analyses revealed that while neither consumer nor carer attitudes were significant predictors of adherence, carer attitudes appeared to have a stronger role in adherence than consumer attitudes. These preliminary results highlight the importance of carer attitudes in relation to patient perceptions and behaviours toward medication, and thus the potential benefits of addressing both consumer and carer attitudes in any intervention for improving adherence.

Attitudes of palliative care clinical staff toward prolonged grief disorder diagnosis and grief interventions.

ABSTRACTObjective:The provision of psychological support to caregivers is an important part of the role of the clinical staff working in palliative care. Staff knowledge and attitudes may determine their openness to referring caregivers to a psychological intervention. We recently developed a self-help intervention for grief and psychological distress among caregivers and were interested in exploring the extent to which staff knowledge and attitudes might affect future implementation. The aims of our study were to: (1) examine the acceptability of self-help psychological intervention for caregivers among palliative care clinical staff; (2) examine potential attitudinal barriers toward prolonged grief disorder (PGD) as a diagnosis and interventions for grief; and (3) bolster staff confidence in skills and knowledge in identifying and managing caregiver psychological distress. METHOD: An anonymous survey was distributed among clinical staff at two inpatient units and two community health services that assessed the acceptability of self-help interventions for caregivers, attitudes about PGD diagnosis and grief intervention, and staff confidence in skills and knowledge in assessing caregiver psychological distress. RESULTS: Overall, clinical staff were positively oriented toward self-help for caregivers and intervention for grief. They were also basically confident in their skills and knowledge. While it was positive PGD attitudes that were associated with acceptability of self-help for caregivers, it was both positive and negative PGD attitudes that were associated more specifically with a willingness to refer caregivers to such an intervention. SIGNIFICANCE OF RESULTS: Our findings are useful in highlighting the issues to be considered in the implementation of a self-help intervention within the healthcare service. Clinical staff seemed positively oriented toward engaging with a psychological intervention for caregivers and likely to act as key allies in implementation.

Is Higher Acceptance Associated With Less Anticipatory Grief Among Patients in Palliative Care?

CONTEXT: Patients in palliative care can experience substantial psychological suffering. Acceptance-based interventions from approaches such as Acceptance and Commitment Therapy have demonstrated effectiveness in helping people cope with a range of life challenges. However, there is a dearth of research examining mechanisms of therapeutic change for patients in palliative care. OBJECTIVES: To assess the relationships between acceptance, anticipatory grief, anxiety, and depression among patients in palliative care. METHODS: A cross-sectional survey was verbally administered to inpatients (N = 73) receiving palliative care. RESULTS: Correlations revealed that acceptance had a strong relationship with anticipatory grief, anxiety, and depression. A hierarchical regression analysis on anticipatory grief showed that acceptance was the largest predictor and accounted for an additional 13% of variance in anticipatory grief over and above anxiety and depression. CONCLUSION: The present study provides preliminary data suggesting that interventions that target acceptance may be indicated in patients in palliative care.

A carer burden and stigma in schizophrenia and affective disorders: Experiences from Sri Lanka.

OBJECTIVES: Stigma compounds the burden experienced by family members of those with a mental illness. This study aimed to examine burden experienced by carers of people with schizophrenia or affective disorders and to explore the relationship between carer burden and stigma. METHOD: A cross sectional descriptive study was conducted with patient-carer dyads involving 67 patients diagnosed with schizophrenia and 51 diagnosed with affective disorder. Carers completed the Zarit Burden Interview (short version) and stigma was measured using the Stigma Scale and the Internalised Stigma of Mental Illness Scale. RESULTS: Carer burden was significantly higher for schizophrenia than affective disorders. Female carers experienced significantly higher burden than male carers. Diagnosis, gender of carer and stigma predicted 22% of the variance in carer burden, with gender identified as a significant predictor. CONCLUSIONS: Reducing stigma related to disclosure of mental illness in carers has the potential to reduce carer burden.

Incorporating health literacy in education for socially disadvantaged adults: an Australian feasibility study.

BACKGROUND: Adult education institutions have been identified as potential settings to improve health literacy and address the health inequalities that stem from limited health literacy. However, few health literacy interventions have been tested in this setting. METHODS: Feasibility study for an RCT of the UK Skilled for Health Program adapted for implementation in Australian adult education settings. Implementation at two sites with mixed methods evaluation to examine feasibility, test for change in participants' health literacy and pilot test health literacy measures. RESULTS: Twenty-two socially disadvantaged adults with low literacy participated in the program and received 80-90 hours of health literacy instruction. The program received institutional support from Australia's largest provider of vocational education and training and was feasible to implement (100 % participation; >90 % completion; high teacher satisfaction). Quantitative results showed improvements in participants' health literacy skills and confidence, with no change on a generic measure of health literacy. Qualitative analysis identified positive student and teacher engagement with course content and self-reported improvements in health knowledge, attitudes, and communication with healthcare professionals. CONCLUSIONS: Positive feasibility results support a larger RCT of the health literacy program. However, there is a need to identify better, multi-dimensional measures of health literacy in order to be able to quantify change in a larger trial. This feasibility study represents the first step in providing the high quality evidence needed to understand the way in which health literacy can be improved and health inequalities reduced through Australian adult education programs.

Prediction of individual differences in adjustment to loss: Acceptance and valued-living as critical appraisal and coping strengths.

Our strengths-based model of coping with death and dying proposes acceptance and valued-living as key coping and appraisal strengths for the bereaved. These are core components of Acceptance and Commitment Therapy (ACT). The aim of this study was to provide an initial exploration of the theorized relationships via a survey of 97 bereaved university students. Using hierarchical regression analysis it was found that acceptance and valued-living were significant predictors of grief, while controlling for other model variables and loss characteristics. Results have implications for ACT-based approaches in supporting those bereaved who are struggling with their grief.

An exploration of decision aid effectiveness: the impact of promoting affective vs. deliberative processing on a health-related decision.

BACKGROUND: Decision aids (DAs) are non-directive communication tools that help patients make value-consistent health-care decisions. However, most DAs have been developed without an explicit theoretical framework, resulting in a lack of understanding of how DAs achieve outcomes. OBJECTIVE: To investigate the effect of promoting affective vs. deliberative processing on DA effectiveness based on dual-process theory. DESIGN, SETTING AND PARTICIPANTS: One hundred and forty-eight female university students participated in a randomized controlled experiment with three conditions: emotion-focused, information-focused and control. Preference-value consistency, knowledge, decisional conflict and satisfaction were compared across the conditions using planned contrast analyses. INTERVENTION: The intervention comprised two different DAs and instructional manipulations. The emotion-focused condition received a modified DA with affective content and instructions to induce an affective reaction. The information-focused and control conditions received the same DA without the affective content. The information-focused condition received additional instructions to induce deliberative processing. RESULTS: Controlling for the experiment-wise error rate at P < 0.017, the emotion-focused and information-focused conditions had significantly higher decisional satisfaction than the control condition (P < 0.001). The emotion-focused condition did not demonstrate preference-value consistency. There were no significant differences for decisional conflict and knowledge. DISCUSSION: Results suggest that the promotion of affective processing may hinder value-consistent decision making, while deliberative processing may enhance decisional satisfaction. CONCLUSIONS: This investigation of the effect of affective and deliberative processes in DA-supported decision making has implications for the design and use of DAs. DA effectiveness may be enhanced by incorporating a simple instruction to focus on the details of the information.

Acceptance and valued living as critical appraisal and coping strengths for caregivers dealing with terminal illness and bereavement.

OBJECTIVE: Informal caregivers of palliative care patients play an essential role in the coordination of care for patients during their final phases of life. However, undertaking a caregiving role can have enduring psychological consequences for caregivers and interfere with functioning. Studies have investigated a variety of factors associated with individual differences in caregiver psychosocial outcomes, but little is known about their relative impact, and there is a need for guiding models to support research in this area. METHOD: A review of the literature was conducted on factors influencing the psychological distress and grief of caregivers. Drawing from acceptance and commitment therapy (ACT) and Stroebe and colleagues' integrative risk factor framework, we developed a process model to describe individual differences in caregiver psychological distress and grief. RESULTS: The model presents caregiver psychological distress and grief as functions of death attitudes and communication about death and dying, mediated by acceptance and valued living from an ACT perspective. An outline of the empirical and theoretical underpinnings for each component in the model is provided. SIGNIFICANT OF RESULTS: The presented model is an inherently strengths-based model that is concordant with acceptance- and values- (ACT) based interventions to facilitate coping in caregivers.

Cancer patient disclosure and patient-doctor communication of complementary and alternative medicine use: a systematic review.

OBJECTIVE: To explore the nondisclosure of complementary and alternative medicine (CAM) use among cancer patients, including reasons for and outcomes from nondisclosure of CAM use, within the context of patient-doctor communication. METHOD: A systematic review was conducted exploring investigations surrounding the communication of CAM use for patients with cancer published until August 2011. RESULTS: A total of 21 studies were located, which reported a prevalence of CAM use among patients with cancer ranging between 11% and 95%; of these patients, 20% to 77% did not disclose their CAM use. The main reasons for nondisclosure were the doctor's lack of inquiry; patient's anticipation of the doctor's disapproval, disinterest, or inability to help; and patient's perception that disclosure of CAM use is irrelevant to their conventional care. There is some evidence to suggest that patient-doctor communication about the use of CAM was associated with an enhanced patient-doctor relationship and higher patient satisfaction. CONCLUSIONS: Although the use of CAM by patients with cancer is high, patients frequently fail to disclose its use to their health professionals for reasons emanating from both sides of the dyadic patient-doctor relationship. Because a substantial proportion of patients with cancer may use CAM and there is potential for herb- or vitamin-drug interactions, further research in patient-doctor communication about CAM is necessary to maintain patient safety and wellbeing. The development of effective interventions to improve the disclosure of CAM use should be an integral part of this future research.