Caregiving for the terminally ill:at what cost?

This literature review exposes the nature and extent of physical and psychosocial morbidity and economic disadvantage, home palliative caregivers suffer as a direct result of their caregiving role. Research has demonstrated that caregivers providing support to individuals receiving palliative care report unmet needs for information, communication, service provision and support from health and community services. Three sets of challenges are highlighted in this literature review which help explain why the needs of home palliative caregivers are largely unmet: (i) barriers to seeking help; (ii) a dearth of research-based interventions focused on reducing the negative aspects of caregiving; and (iii) a number of impediments to effective policy and service development for family caregivers. Furthermore, invited submissions from caregivers echoed and confirmed the issues reported in the literature. Recommendations for enhancing caregiver support are outlined.

Positive aspects and challenges associated with caring for a dying relative at home

Research has consistently shown that family caregivers have a variety of unmet needs, despite comprehensive professional support for caregivers being a central aim of palliative care. This sub-study of a larger randomized controlled trial sought feedback from 47 primary family caregivers of advanced cancer patients who had recently commenced home palliative care. During semi-structured interviews in their homes, family caregivers were asked to comment on the key challenges associated with their role and whether they could identify challenges. These were associated with their own ill health, family circumstances, insufficient skills to manage patient symptoms, limited time for themselves and inadequate support from health professionals. Despite these challenges, 60% of family caregivers were readily able to identify positive aspects of the role. Previous research has tended to focus on the negative impact of caregiving. The extent to which the positive aspects buffer the negative aspects of the role warrants further exploration, as does the long-term impact of the caregiver role on those who are unable to recognize positive elements.

Home-based support for palliative care families:challenges and recommendations

Providing adequate supportive services for the families of palliative care patients is a core principle of palliative care. Caring for a patient with terminal illness at home involves a considerable commitment on the part of family caregivers, and attention must be given to the caregiver's needs as well as those of the patient. Although a home death may be preferred by patients and promoted by healthcare agencies as a cost-effective option, it may be an ideal that is not often realised. Enhanced supportive care strategies can ameliorate the challenges facing families of palliative care patients cared for at home. All health professionals need to improve the standard of family-centred palliative care, and more evidence-based approaches are required.

Hyperglycemia and adverse pregnancy outcome (HAPO) study:Associations with neonatal anthropometrics

OBJECTIVE-To examine associations of neonatal adiposity with maternal glucose levels and cord serum C-peptide in a multicenter multinational study, the Hyperglycemia and Adverse Pregnancy Outcome (HAPO) Study, thereby assessing the Pederson hypothesis linking maternal glycemia and fetal hyperinsulinemia to neonatal adiposity. RESEARCH DESIGN AND METHODS-Eligible pregnant women underwent a standard 75-g oral glucose tolerance test between 24 and 32 weeks gestation (as close to 28 weeks as possible). Neonatal anthropometrics and cord serum C-peptide were measured. Associations of maternal glucose and cord serum C-peptide with neonatal adiposity (sum of skin folds >90th percentile or percent body fat >90th percentile) were assessed using multiple logistic regression analyses, with adjustment for potential confounders, including maternal age, parity, BMI, mean arterial pressure, height, gestational age at delivery, and the baby's sex. RESULTS-Among 23,316 HAPO Study participants with glucose levels blinded to caregivers, cord serum C-peptide results were available for 19,885 babies and skin fold measurements for 19,389. For measures of neonatal adiposity, there were strong statistically significant gradients across increasing levels of maternal glucose and cord serum C-peptide, which persisted after adjustment for potential confounders. In fully adjusted continuous variable models, odds ratios ranged from 1.35 to 1.44 for the two measures of adiposity for fasting, 1-h, and 2-h plasma glucose higher by 1 SD. CONCLUSIONS-These findings confirm the link between maternal glucose and neonatal adiposity and suggest that the relationship is mediated by fetal insulin production and that the Pedersen hypothesis describes a basic biological relationship influencing fetal growth. © 2009 by the American Diabetes Association.

A randomized controlled trial of a self-management psychosocial intervention for men with prostate cancer and their partners: a study protocol.

Background
Little is known about interventions to help men and their partners cope with the after effects of prostate cancer treatment. The lack of in-depth descriptions of the intervention content is hindering the identification of which intervention (or component of an intervention) works.

Aim
To describe the development and evaluation of the content of a self-management psychosocial intervention for men with prostate cancer and their partners.

Design
A feasibility randomized controlled trial including structure, process, and outcome analysis.

Methods
This 9-week intervention commences on completion of treatment and consists of three group and two telephone sessions. The intervention focuses on symptom management, sexual dysfunction, uncertainty management, positive thinking and couple communication. Forty-eight couples will be assigned to either the intervention or a control group receiving usual care. Participants will be assessed at baseline, immediately postintervention and at 1 and 6 months postintervention. Outcome measures for patients and caregivers include self-efficacy, quality of life, symptom distress, uncertainty, benefits of illness, health behaviour, and measures of couple communication and support. An additional caregiver assessment will be completed by the partner.

Discussion
The main purpose of this feasibility study is to investigate the acceptability of the CONNECT programme to men with prostate cancer and their partners and to gain feedback from the participants and facilitators to make changes to and enhance the programme. Reasons why men do not want to participate will be collated to enhance recruitment in the future. We will also test recruitment strategies, randomization procedures, and the acceptability of the questionnaires. Ethical approval granted December 2010.

Harnessing the power of personality assessment:Subjective assessment predicts behaviour in horses

Objective assessment of animal personality is typically time consuming, requiring the repeated measure of behavioural responses. By contrast, subjective assessment of personality allows information to be collected quickly by experienced caregivers. However, subjective assessment must predict behaviour to be valid. Comparisons of subjective assessments and behaviour have been made but often with methodological weaknesses and thus, limited success. Here we test the validity of a subjective assessment against a battery of behaviour tests in 146 horses (Equus caballus). Our first aim was to determine if subjective personality assessment could predict behaviour during behaviour testing. We made specific a priori predictions for how subjectively measured personality should relate to behaviour testing. We found that Extroversion predicted time to complete a handling test and refusal behaviour during this test. It also predicted minimum distance to a novel object. Neuroticism predicted how reactive an individual was to a sudden visual stimulus but not how quickly it recovered from this. Agreeableness did not predict any behaviour during testing. There were several unpredicted correlations between subjective measures and behaviour tests which we explore further. Our second aim was to combine data from the subjective assessment and behaviour tests to gain a more comprehensive understanding of personality. We found that the combination of methods provides new insights into horse behaviour. Furthermore, our data are consistent with the idea of horses showing different coping styles, a novel finding for this species. © 2013 Elsevier B.V.

The Psychological and Health Consequences of Caring for a Spouse With Dementia:A Critical Comparison of Husbands and Wives

Caring for someone with dementia can be demanding, particularly for spouses living with the care recipient. The main goal of this study was to clarify differences in the experience of caregivers who were husbands and wives with respect to burden, health, healthy behaviors, presence of difficult care recipient behaviors, social supports, and the quality of the premorbid relationship. The results of this study support research demonstrating a difference between the caregiving experiences of women and men. It is becoming increasingly apparent that female gender is a marker that places them at increased risk of high burden and less support.

Web Psychosocial Surveys in Cancer Survivorship— A Methodological Note

The number of Internet surveys is increasing, and there is a need to examine critically their value in psychosocial cancer care research. This study explored the use of an online method of recruiting and surveying people affected by cancer. An online survey was designed to measure the health status and service needs of adult cancer survivors and caregivers. The online survey received 491 page visits; only 5% of visitors (13 survivors and 14 cancer caregivers) completed the online questionnaire. The average age of survivors and caregivers was 43 and 42 years, respectively. The majority of survivor and caregiver online respondents were female (23/27, 85%) and had been affected by cancer between 1 and 3 years previously (16/27, 59%). Our online research did not appear to be an effective method for recruiting and surveying the psychosocial health of cancer survivors. This study identified potential pitfalls and obstacles of online cancer care surveys particularly in relation to the age of cancer survivors, access to the Internet and the need to ensure surveys are easily and immediately accessible. Future Internet surveys should pay particular attention to the need to advertise and improve survey access via targeted and tailored techniques.

A pilot study of a family focused, psychosocial intervention with war-exposed youth at risk of attack and abduction in north-eastern Democratic Republic of Congo

Rural communities in the Haut-Uele Province of northern Democratic Republic of Congo live in constant danger of attack and/or abduction by units of the Lord's Resistance Army operating in the region. This pilot study sought to develop and evaluate a community-participative psychosocial intervention involving life skills and relaxation training and Mobile Cinema screenings with this war-affected population living under current threat. 159 war-affected children and young people (aged 7-18) from the villages of Kiliwa and Li-May in north-eastern DR Congo took part in this study. In total, 22% of participants had been abduction previously while 73% had a family member abducted. Symptoms of post-traumatic stress reactions, internalising problems, conduct problems and pro-social behaviour were assessed by blinded interviewers at pre- and post-intervention and at 3-month follow-up. Participants were randomised (with an accompanying caregiver) to 8 sessions of a group-based, community-participative, psychosocial intervention (n=79) carried out by supervised local, lay facilitators or a wait-list control group (n=80). Average seminar attendance rates were high: 88% for participants and 84% for caregivers. Drop-out was low: 97% of participants were assessed at post-intervention and 88% at 3 month follow-up. At post-test, participants reported significantly fewer symptoms of post-traumatic stress reactions compared to controls (Cohen's d=0.40). At 3 month follow up, large improvements in internalising symptoms and moderate improvements in pro-social scores were reported, with caregivers noting a moderate to large decline in conduct problems among the young people. Trial Registration clinicalTrials.gov, Identifier: NCT01542398.

The influence of parents, older siblings, and non-parental care on infant development at nine months of age

Background: The majority of research examining the influence of social environment on early child development suggests benefits to two-parent households, but contradictory evidence for the effects of siblings. The aims of the present study were to examine the influence of the child's proximal social environment, and the effects of interactions between socioeconomic status and social environment on developmental outcomes.

Methods: Primary caregivers of a representative sample of 10,748 nine-month-old infants in Ireland completed the Ages and Stages Questionnaire and provided information on social environment. Adjustment was made for infant and maternal characteristics, household income, and area where the child was living at the time of the study. Further analyses tested for interactions between social environment and household income.

Results: Binary logistic regressions indicated no effects for number of parents in the household. However, the presence of siblings in the household was a consistent predictor of failing to reach milestones in communication, gross motor, problem-solving, and personal-social development. Furthermore, there was a gradient of increasing likelihood of failing in gross motor, problem-solving, and personal-social development with increasing numbers of siblings. Care by a grandparent decreased the likelihood of failing in communication and personal-social development.

Conclusions:These findings do not support the majority of research that finds positive benefits for two-parent households. Similarly, the findings suggest limited effects for non-parental care. However, the observed negative effects of siblings support both the confluence and resource dilution models of sibling effect. Examination of follow-up data may elucidate current findings.

Mediterranean diet interventions to prevent cognitive decline-opportunities and challenges

Cognitive decline has a profound impact on the health and quality of life of older people and their caregivers. Exploring mechanisms to delay cognitive decline has become an urgent economic priority, given the projected changes in population demographics. Systematic reviews and meta-analyses of observational studies suggest that adherence to a Mediterranean Diet (MD) is associated with reduced cognitive decline, but such an observation needs to be tested in randomised controlled trials. Intervention evidence is currently limited, and future studies need to be adequately powered, with careful attention given to choice of participants, outcomes being assessed, study duration and strategies to achieve compliance. Alongside these studies, consideration has to be given to how best promote and encourage dietary change in older people in general, and particularly in those experiencing the early stages of cognitive decline, as there may be specific factors that need to be considered when designing lifestyle behaviour change interventions in this group.

Echoes of the future: Adults with disabilities living at home with their parents

Almost 90% of all adult sons and daughters with disabilities live at home with their parents. Consequently, they have life experiences that are atypical for most of their adult peers and their aging caregivers are under stress due to failing health, financial pressures, bereavement, and worry about the future.

Adults with intellectual disabilities and aging parents took part in focus groups and interviews. results show a loving and caring home environment but evidence a lack of effective life skills development and futures planning. the paper draws attention to the inevitable crisis that occurs when aging caregivers are no longer able to care. The urgent need for skill development and timely futures planning is outlined.

Exploring the prevalence of and factors associated with pain: a cross-sectional study of community-dwelling people with dementia

Few pain studies have made community-dwelling people with dementia (PWD) their focus. The aim of this study was to determine the prevalence of pain among this patient population and to explore medication use. Moreover, we sought to investigate patient and caregiver variables associated with the presence of pain. Community-dwelling PWD and their caregivers were recruited between May 2009 and July 2012 from outpatient memory clinics in Northern Ireland to take part in a face-to-face structured interview with a researcher. Patients' cognitive status and presence of depression were established. A full medication history was taken. Both patients and caregivers were asked to rate patients' pain, at the time of the interview and on an average day, using a 7-point verbal descriptor scale. From the 206 patients who were eligible to take part, 75 patient-caregiver dyads participated in the study (participation rate = 36.4%). The majority of patients (92.0%) had dementia classed as mild or moderate. Pain was commonly reported among the sample, with 57.3% of patients and 70.7% of caregivers reporting patient pain on an average day. Significant differences were found between patients' and caregivers' reports of pain. Two-fifths of patients (40.0%) were prescribed analgesia. Antipsychotic, hypnotic and anxiolytic drug use was low, whereas antidepressant drugs were prescribed more commonly. Presence of pain was unaffected by dementia severity; however, the use of prescribed analgesic medication was a significant predictor of the presence of pain in these patients, whether reported by the patient or their caregiver 'right now' or 'on an average day' (P < 0.001). Patient and caregiver recruitment was challenging, and remains a barrier to research in this area in the future.

Appointment keeping for medical review among patients with selected chronic diseases in an urban area of Uganda

Introduction: proper management of chronic diseases is important for prevention of disease complications and yet some patients miss appointments for medical review thereby missing the opportunity for proper monitoring of their disease conditions. There is limited information on missed appointments among chronic disease patients in resource limited settings. This study aimed to determine the prevalence of missed appointments for medical review and associated factors among chronic disease patients in an urban area of Uganda.

Methods: patients or caregivers of children with chronic diseases were identified as they bought medicines from a community pharmacy. They were visited at home to access their medical documents and those whose chronic disease status was ascertained were enrolled. The data was collected using: questionnaires, review of medical documents, and in-depth interviews with chronic disease patients.

Results: the prevalence of missed appointments was 42% (95%CI=35-49%). The factors associated with missed appointments were: monthly income ?30US Dollars (OR=2.56, CI=1.25–5.26), affording less than half of prescribed drugs (OR=3.92, CI=1.64–9.40), not experiencing adverse events (OR=2.66, CI=1.26–5.61), not sure if treatment helps (OR=2.84, CI=1.047.77), not having a medicines administration schedule (OR=6.77, CI=2.11–21.68), and increasing number of drugs (OR=0.72, CI=0.53–0.98). Conclusion: patients missed appointments mainly due to: financial and health system barriers, conflicting commitments with appointments, and perceptions of the disease condition. Patients should be supported with accessible and affordable health services.

Cystic Fibrosis Foundation and European Cystic Fibrosis Society Survey of cystic fibrosis mental health care delivery

Background: Psychological morbidity in individuals with cystic fibrosis (CF) and their caregivers is common. The Cystic Fibrosis Foundation (CFF) and European Cystic Fibrosis Society (ECFS) Guidelines Committee on Mental Health sought the views of CF health care professionals concerning mental health care delivery. Methods: An online survey which focused on the current provision and barriers to mental health care was distributed to CF health care professionals. Results: Of the 1454 respondents, many did not have a colleague trained in mental health issues and 20% had no one on their team whose primary role was focused on assessing or treating these issues. Insufficient resources and a lack of competency were reported in relation to mental health referrals. Seventy-three percent of respondents had no experience with mental health screening. Of those who did, they utilized 48 different, validated scales. Conclusions: These data have informed the decision-making, dissemination and implementation strategies of the Mental Health Guidelines Committee sponsored by the CFF and ECFS.