Family carers' experiences of coping with the deaths of adults in home settings: A narrative analysis of carers' relevant background worries.

BACKGROUND: Internationally, evidence on the support needs of family carers who look after a terminally ill adult in home settings is incomplete. AIM: To illustrate the relevance of 'relevant background worries' in family carers' accounts of caring at home for a dying adult. DESIGN: A qualitative cross-sectional observational study was conducted in England, United Kingdom, in 2011-2013 on the experiences of adult family carers ( n = 59) of older dying adults (aged 50+ years) with malignant and/or non-malignant conditions. Interviews occurred post-bereavement. This article reports on a subset of participants' interview transcripts ( n = 30) where narrative analysis was undertaken. SETTING/PARTICIPANTS: Carers were interviewed in their home setting, having been purposively recruited via general practitioner practices in two study sites in England. The subset of participants ( n = 30) was purposively selected from the parent sample with reference to carers' age, relationship to the patient, family circumstances and study sites. RESULTS: Evidence is provided on the importance of what we conceptualise as carers' 'relevant background worries'; these varied in nature, significance and impact. Four case studies are presented where these worries constituted psychosocial factors that impacted on caregivers' actions and emotional well-being. Two themes are discussed: (1) whether relevant background worries are important enough to be identified and responded to and (2) how such worries could be picked up and managed by professionals. CONCLUSION: It is argued that the quality of clinical practice could be improved if specialist palliative care teams in community contexts both identified and responded to significant support needs associated with family carers' relevant background worries.

Caring for a dying spouse at the end of life: 'It's one of the things you volunteer for when you get married': a qualitative study of the oldest carers' experiences.

BACKGROUND: older people aged 80 and over are increasingly providing end-of-life care to spouses at home and often do so for long periods of time, while also trying to manage their own illnesses and disabilities. Little of the research on older spousal carers has focussed on the oldest carers; hence, the needs of this particular population are not fully known. OBJECTIVE: to explore the experiences of the 'oldest carers' in caring for a dying spouse at home. METHODS: secondary analysis was undertaken on a subset of data from a larger qualitative interview study; this dataset comprised 17 interviews from participants aged 80 or over. Framework analysis methods were used, with items derived from the thematic analysis of the main study. RESULTS: the oldest carers in this subset demonstrated high levels of resilience and the ability to adapt to their caring role. Caring until death was accepted as an integral part of the commitment made to their partner as part of the 'wedding contract'. Carers felt they benefitted from the support provided by family, friends and care services; however, their own care needs were not always recognised by health and social care services. CONCLUSIONS: these findings underscore the complexity of the oldest carers' experiences and challenges in times of illness and end of life. Healthcare professionals should be alerted to the myriad ways caregiving is enacted in serious illness and seek opportunities for developing supportive interventions specifically for older carers.

Equipping the healthcare workforce to meet the complex health needs of older people in the community: a skills-led approach.

The shift towards delivering more clinical care in the community not only supports the healthcare system by avoiding unnecessary hospital admissions, but can also improve outcomes, particularly for older people with complex healthcare needs. Therefore, healthcare organisations need to consider how to ensure their workforce has the capabilities required to provide care in accordance with this new model. This article details a project that involved the design and development of a replicable Ageing Well programme of learning to increase knowledge, skills and confidence among registered and unregistered practitioners, underpinned by a 'skills not roles' strategy. Although evaluation of the programme is ongoing, the authors encourage its wider adoption by outlining its benefits, how the challenges encountered during this project were overcome and the learning points gained from the experience.

A multi-center prospective study of plant-based nutritional support in adult community-based patients at risk of disease-related malnutrition.

Introduction: There is an emerging need for plant-based, vegan options for patients requiring nutritional support. Methods: Twenty-four adults at risk of malnutrition (age: 59 years (SD 18); Sex: 18 female, 6 male; BMI: 19.0 kg/m2 (SD 3.3); multiple diagnoses) requiring plant-based nutritional support participated in a multi-center, prospective study of a (vegan suitable) multi-nutrient, ready-to-drink, oral nutritional supplement (ONS) [1.5 kcal/mL; 300 kcal, 12 g protein/200 mL bottle, mean prescription 275 mL/day (SD 115)] alongside dietary advice for 28 days. Compliance, anthropometry, malnutrition risk, dietary intake, appetite, acceptability, gastrointestinal (GI) tolerance, nutritional goal(s), and safety were assessed. Results: Patients required a plant-based ONS due to personal preference/variety (33%), religious/cultural reasons (28%), veganism/reduce animal-derived consumption (17%), environmental/sustainability reasons (17%), and health reasons (5%). Compliance was 94% (SD 16). High risk of malnutrition ('MUST' score ≥ 2) reduced from 20 to 16 patients (p = 0.046). Body weight (+0.6 kg (SD 1.2), p = 0.02), BMI (+0.2 kg/m2 (SD 0.5), p = 0.03), total mean energy (+387 kcal/day (SD 416), p < 0.0001) and protein intake (+14 g/day (SD 39), p = 0.03), and the number of micronutrients meeting the UK reference nutrient intake (RNI) (7 vs. 14, p = 0.008) significantly increased. Appetite (Simplified Nutritional Appetite Questionnaire (SNAQ) score; p = 0.13) was maintained. Most GI symptoms were stable throughout the study (p > 0.06) with no serious adverse events related. Discussion: This study highlights that plant-based nutrition support using a vegan-suitable plant-based ONS is highly complied with, improving the nutritional outcomes of patients at risk of malnutrition.

The perspectives of bereaved family carers on dying at home: the study protocol of 'unpacking the home: family carers' reflections on dying at home.

BACKGROUND: Recent end of life care policy prioritises patient choice over place of care and in particular promotes dying at home. This policy is predicated on the assumption that there are family carers able and willing to provide care for the dying person. Through the accounts of bereaved family members, the 'Unpacking the home' study aims to gain an in-depth understanding of 'home' and the issues faced by family members caring for a dying older person at home; it also aims to examine the way the home is transformed in the process of providing end of life care, and offer a critical analysis of policies that aim to increase home deaths. This paper presents the protocol for this study. METHODS/DESIGN: A cross-sectional qualitative study has been designed to achieve the study aims. In-depth interviews will be conducted in the north and south of England with 50 bereaved family carers to elicit their accounts of witnessing the dying in the home of an older person (50+ years). All interviews will be subjected to thematic analysis, and narrative analysis will be undertaken on a subset of 30 interview transcripts. A final phase of integration and policy analysis will be conducted towards the end of the study. User involvement is integral to this study, with service users actively engaged at every stage. DISCUSSION: This study will seek to take a qualitative approach by explicitly recognising that family carers are central to the experience of dying at home for older people, and they have needs that may be amenable to support and anticipatory planning. The strengths of this study, which include its interdisciplinary and participatory approach, and in-depth data collection and analysis methods, will be explored. The limitations and challenges of this research will also be considered. This study seeks to make recommendations that will ensure that family carers receive appropriate and adequate support in caring for their loved ones at the end of life.

Is hospitalisation for COPD an opportunity for advance care planning? A qualitative study.

BACKGROUND: It is recognised that patients with chronic obstructive pulmonary disease (COPD) should have the chance to discuss end-of-life care and advance care planning (ACP). Admission to hospital with an exacerbation may be a possible opportunity. AIMS: To examine whether an admission to hospital for an exacerbation of COPD is an opportunity for ACP and to understand, from the patient perspective, the optimum circumstances for ACP. METHODS: Patients who had a recent admission for an exacerbation of COPD were identified. Sixteen patients and their carers were interviewed. The interviews were analysed using qualitative methodology. RESULTS: No patients recalled discussions about resuscitation or planning for the future. Hospital admission and discharge was seen as chaotic and lacking in continuity. Some patients welcomed the opportunity to discuss ACP and felt that their general practitioner (GP) would be the best person for this. Others wished to avoid end-of-life care discussions but there was evidence that, with empathetic and knowledgeable support, these discussions could be initiated. CONCLUSIONS: The period of hospitalisation may not be an appropriate time to initiate ACP but may be a milestone that can lead to discussions. GPs should be alert to that opportunity after discharge from hospital.

Relationships between self-reported smoking, household environmental tobacco smoke exposure and depressive symptoms in a pregnant minority population.

UNLABELLED: This study sought to examine relationships between depressive symptoms and prenatal smoking and/or household environmental tobacco smoke exposure (HH-ETSE) among urban minority women. We analyzed private, audio computer-assisted self interview data from a clinic-based sample of 929 minority pregnant women in Washington, DC. Depressive symptoms were assessed via the Beck Depression Inventory Fast Screen. HH-ETSE, current smoking, and former smoking were assessed via self-report. Depression levels and demographic characteristics were compared: (1) among nonsmokers, for those reporting HH-ETSE versus no HH-ETSE; and (2) among smokers, for those reporting current smoking (in last 7 days) versus former smokers. Measures associated with HH-ETSE/current smoking in bivariate analysis at P < 0.20 were included in adjusted logistic regression models. HH-ETSE, as a possible indicator of a social smoking network, was assessed as a mediator for the relationship between depression and current smoking. RESULTS: Non-smokers reporting moderate-to-severe depressive symptoms showed significantly higher adjusted odds of prenatal HH-ETSE (AOR 2.5, 95% CI [1.2, 5.2]). Smokers reporting moderate-to-severe or mild depressive symptoms showed significantly higher adjusted odds of current smoking (AOR 1.9, 95% CI [1.1, 3.5] and AOR 1.8, 95% CI [1.1, 3.1], respectively). Among smokers, HH-ETSE was a significant mediator for the association between moderate-to-severe symptoms and current smoking. In conclusion, health care providers should be aware that depressed urban minority women are at risk of continued smoking/HH-ETSE during pregnancy. Interventions designed to encourage behavior change should include screening for depression, and build skills so that women are better able to address the social environment.

Efficacy of a randomized cell phone-based counseling intervention in postponing subsequent pregnancy among teen mothers.

Adolescent mothers in Washington, DC have a high rate of subsequent teen pregnancies, often within 24 months. Children of teen mothers are at risk for adverse psychosocial outcomes. When adolescents are strongly attached to parents, schools, and positive peers, they may be less likely to repeat a pregnancy. This study tested the efficacy of a counseling intervention delivered by cell phone and focused on postponing subsequent teen pregnancies by strengthening healthy relationships, reproductive practices, and positive youth assets. The objective of this study was to compare time to a repeat pregnancy between the intervention and usual care groups, and, secondarily, to determine whether treatment intensity influenced time to subsequent conception. Primiparous pregnant teens ages 15-19, were recruited in Washington, DC. Of 849 teens screened, 29.3% (n = 249) met inclusion criteria, consented to participate, and completed baseline measures. They were then randomized to the intervention (N = 124) or to usual care (N = 125). Intervention group teens received cell phones for 18 months of counseling sessions, and quarterly group sessions. Follow-up measures assessed subsequent pregnancy through 24 months post-delivery. A survival analysis compared time to subsequent conception in the two treatment groups. Additional models examined the effect of treatment intensity. By 24 months, 31% of the intervention and 36% of usual care group teens had a subsequent pregnancy. Group differences were not statistically significant in intent-to-treat analysis. Because there was variability in the degree of exposure of teens to the curriculum, a survival analysis accounting for treatment intensity was performed and a significant interaction with age was detected. Participants who were aged 15-17 years at delivery showed a significant reduction in subsequent pregnancy with increased levels of intervention exposure (P < 0.01), but not those ≥ 18 years. Adolescents ≥ 18 years faced considerable challenges to treatment success. Individual, social, and contextual factors are all important to consider in the prevention of repeat teen pregnancy. Cell phone-based approaches to counseling may not be the most ideal for addressing complex, socially-mediated behaviors such as this, except for selective subgroups. A lack of resources within the community for older teens may interfere with program success.

The early intervention safeguarding nurse pilot: an integrated model of working.

Some of the most vulnerable children will need co-ordinated help from health, children's services and other agencies. Co-ordinated and joint working hinges on effective communication at all levels. Evidence shows that direct verbal communication is a more effective way to share concerns and that this should be followed up by written information. Yet barriers persist that prevent this from happening. Integrated health and social care teams are purported to break down professional and communication barriers. This paper reports on the evaluation of a pilot integrated model of health and social care in the North West of England. Such models can work and produce positive outcomes for children and families, but require full commitment from all parties. There are principles that need to be in place for this integrated model to achieve its aims and objectives, such as a robust governance framework that specifies the roles and responsibilities of each agency, managers and practitioners. Despite the model achieving its aim, the project was not as efficient as it could have been due to the lack of an integrated information technology system.

Reducing psychosocial and behavioral pregnancy risk factors: results of a randomized clinical trial among high-risk pregnant african american women.

OBJECTIVES: We evaluated the efficacy of a primary care intervention targeting pregnant African American women and focusing on psychosocial and behavioral risk factors for poor reproductive outcomes (cigarette smoking, secondhand smoke exposure, depression, and intimate partner violence). METHODS: Pregnant African American women (N = 1044) were randomized to an intervention or usual care group. Clinic-based, individually tailored counseling sessions were adapted from evidence-based interventions. Follow-up data were obtained for 850 women. Multiple imputation methodology was used to estimate missing data. Outcome measures were number of risks at baseline, first follow-up, and second follow-up and within-person changes in risk from baseline to the second follow-up. RESULTS: Number of risks did not differ between the intervention and usual care groups at baseline, the second trimester, or the third trimester. Women in the intervention group more frequently resolved some or all of their risks than did women in the usual care group (odds ratio = 1.61; 95% confidence interval = 1.08, 2.39; P = .021). CONCLUSIONS: In comparison with usual care, a clinic-based behavioral intervention significantly reduced psychosocial and behavioral pregnancy risk factors among high-risk African American women receiving prenatal care.