Costs and advance directives at the end of life: a case of the ‘Coaching Older Adults and Carers to have their preferences Heard (COACH)’ trial

BACKGROUND: Total costs associated with care for older people nearing the end of life and the cost variations related with end of life care decisions are not well documented in the literature. Healthcare utilisation and associated health care costs for a group of older Australians who entered Transition Care following an acute hospital admission were calculated. Costs were differentiated according to a number of health care decisions and outcomes including advance directives (ADs).

METHODS: Study participants were drawn from the Coaching Older Adults and Carers to have their preferences Heard (COACH) trial funded by the Australian National Health and Medical Research Council. Data collected included total health care costs, the type of (and when) ADs were completed and the place of death. Two-step endogenous treatment-regression models were employed to test the relationship between costs and a number of variables including completion of ADs.

RESULTS: The trial recruited 230 older adults with mean age 84 years. At the end of the trial, 53 had died and 80 had completed ADs. Total healthcare costs were higher for younger participants and those who had died. No statistically significant association was found between costs and completion of ADs.

CONCLUSION: For our frail study population, the completion of ADs did not have an effect on health care utilisation and costs. Further research is needed to substantiate these findings in larger and more diverse clinical cohorts of older people.

How young people from culturally and linguistically diverse backgrounds experience mental health: Some insights for mental health nurses

This article reports on part of a study that looked at the mental health of culturally and linguistically diverse (CALD) young people. The research sought to learn from CALD young people, carers, and service providers experiences relevant to the mental health of this group of young people. The ultimate goal was to gain insights that would inform government policy, service providers, ethnic communities and most importantly the young people themselves. To this end, qualitative interviews were undertaken with 123 CALD young people, 41 carers and 14 mental health service providers in Queensland, Western Australia and South Australia. Only one aspect of the study will be dealt with here, namely the views of the young CALD participants, which included risk factors, coping strategies and recommendations about how they could be supported in their struggle to maintain mental health. One of the most important findings of the study relates to the resilience of these young people and an insight into the strategies that they used to cope. The efforts of these young people to assist us in our attempts to understand their situation deserve to be rewarded by improvements in the care that we provide. To this end this article sets out to inform mental health nurses of the results of the study so that they will be in a position to better understand the needs and strengths of their CALD clients and be in a better position to work effectively with them.

The psychosocial impact of caregiving on young people who have a parent with an illness or disability: Comparisons between young caregivers and noncaregivers

Objective: To investigate the psychosocial impact of young caregiving by empirically validating prominent qualitative themes.. This was achieved through developing an inventory called the Young Caregiver of Parents Inventory (YCOPI) designed to assess these themes and by comparing young caregivers and noncaregivers. Method: Two hundred forty-five participants between 10 and 25 years completed questionnaires: 100 young caregivers and 145 noncaregivers. In addition to the YCOPI, the following variables were measured: demographics, caregiving context, social support, appraisal, coping strategies, and adjustment (health, life satisfaction, distress, positive affect). Results: Eight reliable factors emerged from the YCOPI that described the diverse impacts of caregiving and reflected the key themes reported in prior research. The factors were related to most caregiving context variables and theoretically relevant stress and coping variables. Compared with noncaregivers, young caregivers reported higher levels of young caregiving impact, less reliance on problem-solving coping, and higher somatization and lower life satisfaction. Conclusions: Findings delineate key impacts of young caregiving and highlight the importance of ensuring that measures used in research on young caregivers are sensitive to issues pertinent to this population.

Patient/carers' recollection of medicines related information from an out-patient clinic appointment

AIM: To identify what medicines related information children/young people or their parents/carers are able to recall following an out-patient clinic appointment. METHOD: A convenience sample of patients' prescribed at least one new long-term (>6 weeks) medicine were recruited from a single UK paediatric hospital out-patient pharmacy. A face-to-face semi-structured questionnaire was administered to participants when they presented with their prescription. The questionnaire included the following themes: names of the medicines, therapeutic indication, dose regimen, duration of treatment and adverse effects.The results were analysed using Microsoft Excel 2013. RESULTS: One hundred participants consented and were included in the study. One hundred and forty-five medicines were prescribed in total. Participants were able to recall the names of 96 (66%) medicines and were aware of the therapeutic indication for 142 (97.9%) medicines. The dose regimen was accurately described for 120 (82.8%) medicines with the duration of treatment known for 132 (91%). Participants mentioned that they had been advised about side effects for 44 (30.3%) medicines. Specific counselling points recommended by the BNFc1, were either omitted or not recalled by participants for the following systemic treatments: cetirizine (1), chlorphenamine (1), desmopressin (2), hydroxyzine (2), itraconazole (1), piroxicam (2), methotrexate (1), stiripentol (1) and topiramate (1). CONCLUSION: Following an out-patient consultation, where a new medicine is prescribed, children and their parents/carers are usually able to recall the indication, dose regimen and duration of treatment. Few were able to recall, or were told about, possible adverse effects. This may include some important drug specific effects that require vigilance during treatment.Patients, along with families and carers, should be involved in the decision to prescribe a medicine.2 This includes a discussion about the benefits of the medicine on the patient's condition and possible adverse effects.2 Treatment side effects have been shown to be a factor in treatment non-adherence in paediatric long-term medical conditions.3 Practitioners should explain to patients, and their family members or carers where appropriate, how to identify and report medicines-related patient safety incidents.4 However, this study suggests that medical staff may not be comfortable discussing the adverse effects of medicines with patients or their parents/carers.Further research in to the shared decision making process in the paediatric out-patient clinic when a new long-term medicine is prescribed is required to further support medicines adherence and the patient safety agenda.

Comparing long-term placements for young children in care: Does type of placement really matter?

This paper presents findings from the third phase of a longitudinal study, entitled Care Pathways and Outcomes, which has been tracking the placements and measuring outcomes for a population of children (n = 374) who were under the age of five and in care in Northern Ireland on the 31st March 2000. It explores how a sub-sample of these children at age nine to 14 years old were getting on in the placements provided for them, in comparative terms across five placement types: adoption; foster care; kinship foster care (with relatives); on Residence Order; and living with birth parents. This specifically focused on the development of attachment and self-concept from the perspective of the children, and behavioural and emotional function, and parenting stress, from the perspective of parents and carers. Findings showed no significant placement effect from the perspective of children, and a statistically weak, but descriptively compelling, effect from the perspective of parents. The findings challenge the notion of adoption as the gold standard in long-term placements, specifically from the perspective of children in terms of their parent/carer attachments and self-concept, and highlight what appears to be the central importance of placement longevity for delivering positive longer-term outcomes for these children, irrespective of placement type.

Layers of Listening: Qualitative Analysis of the Impact of Early Intervention Services for First-episode Psychosis on Carers' Experiences

Background Early intervention services (EIS) comprise low-stigma, youth-friendly mental health teams for young people undergoing first-episode psychosis (FEP). Engaging with the family of the young person is central to EIS policy and practice. Aims By analysing carers' accounts of their daily lives and affective challenges during a relative's FEP against the background of wider research into EIS, this paper explores relationships between carers' experiences and EIS. Method Semi-structured longitudinal interviews with 80 carers of young people with FEP treated through English EIS. Results Our data suggest that EIS successfully aid carers to support their relatives, particularly through the provision of knowledge about psychosis and medications. However, paradoxical ramifications of these user-focused engagements also emerge; they risk leaving carers' emotions unacknowledged and compounding an existing lack of help-seeking. Conclusions By focusing on EIS's engagements with carers, this paper draws attention to an urgent broader question: as a continuing emphasis on care outside the clinic space places family members at the heart of the care of those with severe mental illness, we ask: who can, and should, support carers, and in what ways?

A systematic review on the factors associated with positive experiences in carers of someone with cancer.

The aim of this review was to identify the factors associated with positive experiences in non-professional carers of someone with a cancer diagnosis. A systematic search of the following electronic databases was undertaken: Cochrane Library, CINAHL, PsycINFO, SocINDEX and Medline. Literature was searched using terms relating to cancer, caring and positive experiences. Additional records were identified through a manual search of relevant reference lists. The search included studies published in English from 1990- June 2015. Two raters were involved in data extraction, quality appraisal, coding, synthesis, and analysis. Evolutionary concept analysis was used as a guiding framework in order to focus on attributes associated with positive experiences. Fifty two articles were included in this review. Analysis identified four overarching attributes: ‘gender’, ‘personal resources’, ‘finding meaning’ and ‘social context’. Despite the challenges associated with caring this combination of internal and external factors enabled some carers to report positive experiences related to caring. This knowledge may be clinically helpful when designing supportive interventions. Strengths and limitations of these claims are discussed.

Can foster carers help children resolve their emotional and behavioural difficulties?

Although foster care is generally seen as providing a positive experience for the children and young people for whom it caters, it is rarely conceived of as a place where the children are helped to address their emotional difficulties and modify their often difficult behaviour. Yet research evidence suggests that some foster carers are consistently less likely to have placements which break down, and that foster carers who show particular skills in parenting can make a difference to successful outcomes. The paper draws on a large longitudinal study of foster care to argue that it is possible to learn from what these foster carers do in order to develop these skills in others. A model of successful foster care. developed from the main statistical part of the study is first described. Two cases from the qualitative, case studies component of the research are then analysed to demonstrate a quality of responsive parenting. The model is further developed within the framework of the dynamic of attachment and interest sharing proposed by Heard and Lake, to show how this can be used as a basis for future approaches to working with foster placements.

Protocol for the Hall Technique study: A trial to measure clinical effectiveness and cost-effectiveness of stainless steel crowns for dental caries restoration in primary molars in young children

BACKGROUND: The Hall Technique (HT) is a carious primary molar treatment that does not require local analgesia, carious tissue removal or tooth preparation. The carious lesions in carefully selected teeth are sealed with a stainless steel crown (preformed metal crown). The study aims are to determine the clinical effectiveness, acceptability and cost-effectiveness of the HT for management of carious lesions in young dental patients. METHODS/DESIGN: Children, aged 3-7years, with a primary molar tooth with a carious lesion extending no further than the middle third of dentine, with no signs or symptoms of pulp inflammation or infection, and attending one of three community agencies are recruited. Target sample size is 220. A control tooth with an intra-coronal restoration is sourced from the same mouth. The primary outcome is the period of time free from further treatment. The assessments are scheduled at 6, 12 and 24months. In addition to the clinical assessment, acceptability of the HT will be assessed via questionnaires among patients and their primary carers at baseline, 6, 12 and 24months. Cost-outcome description and cost-effectiveness analysis from healthcare provider and societal perspective will be conducted. DISCUSSION: The clinical effectiveness, acceptability and cost-effectiveness of the HT in the community dental setting will be evaluated. The results of this study will determine the implementation of HT in the management of dental caries in young children.

A telephone survey to determine the experiences of children and their parents/carers, following the initiation of a new medicine

Objective: To determine what issues are experienced during the first few weeks of therapy by patients, and their parents/carers, when a child/young person has been prescribed a new medicine. Method: One hundred patients aged ≤18 years of age prescribed a new medicine for ≥6 weeks were recruited from a single UK National Health Service specialist paediatric hospital outpatient pharmacy. Six weeks after the first dispensing of their new medicine the patient or their parent/carer received telephone follow-up by a researcher and verbally completed a questionnaire containing both open and closed questions. Patient or parent/carer experiences were identified and analysed using thematic analysis and descriptive statistics. Results: Eighty-six participants were available for telephone follow-up. Six (7%) had not started their medicine. Paediatric patients and their parents/carers experienced a range of issues during the first few weeks after starting a new medicine. These included additional concerns/questions (24/80, 30%), administration issues (21/80, 26.3%), adverse effects (29/80, 36.3%) and obtaining repeat supplies (12/80, 15%). The Morisky Medication Adherence Scale indicated that 34/78 (43.6%) participants had a high adherence rating, 35/78 (44.9%) medium and 9/78 (11.5%) a low rating. Conclusions: Paediatric patients and their parents/carers experience a range of issues during the first few weeks after starting a new medicine. Further research is required to determine the type of interventions that may further support medicines use in this group of patients.

Too young to drink but old enough to drive under the influence : a study of underage offenders as seen in substance abuse treatment in Texas

Driving under the influence (DUI) is a major road safety problem. Historically, alcohol has been assumed to play a larger role in crashes and DUI education programs have reflected this assumption, although recent evidence suggests that younger drivers are becoming more likely to drive drugged than to drive drunk. This is a study of 7096 Texas clients under age 21 who were admitted to state-funded treatment programs between 1997 and 2007 with a past-year DUI arrest, DUI probation, or DUI referral. Data were obtained from the State’s administrative dataset. Multivariate logistic regressions models were used to understand the differences between those minors entering treatment as a DUI as compared to a non-DUI as well as the risks for completing treatment and for being abstinent in the month prior to follow-up. A major finding was that over time, the primary problem for underage DUI drivers changed from alcohol to marijuana. Being abstinent in the month prior to discharge, having a primary problem with alcohol rather than another drug, and having more family involved were the strongest predictors of treatment completion. Living in a household where the client was exposed to alcohol abuse or drug use, having been in residential treatment, and having more drug and alcohol and family problems were the strongest predictors of not being abstinent at follow-up. As a result, there is a need to direct more attention towards meeting the needs of the young DUI population through programs that address drug as well as alcohol consumption problems.

Young children as rule makers

Young children engage in a constant process of negotiating and constructing rules, utilizing these rules as cultural resources to manage their social interactions. This paper examines how young children make sense of, and also construct, rules within one early childhood classroom. This paper draws on a recent study conducted in Australia, in which video-recorded episodes of young children’s talk-in-interaction were examined. Analysis revealed four interactional practices that the children used, including manipulating materials and places to claim ownership of resources within the play space; developing or using pre-existing rules and social orders to control the interactions of their peers; strategically using language to regulate the actions of those around them; and creating and using membership categories such as ‘car owner’ or ‘team member’ to include or exclude others and also to control and participate in the unfolding interaction. While the classroom setting was framed within adult conceptions and regulations, analysis of the children’s interaction demonstrated their co-constructions of social order and imposition of their own forms of rules. Young children negotiated both adult constructed social order and also their own peer constructed social order, drawing upon various rules within both social orders as cultural resources by which they managed their interaction.