A conceptual model and key variables for guiding supportive interventions for family caregivers of people receiving palliative care

According to the World Health Organization, the patient and family should be viewed as the "unit of care" when palliative care is required. Therefore family caregivers should receive optimal supportive care from health professionals. However, the impact of supporting a dying relative is frequently described as having negative physical and psychosocial sequalae. Furthermore, family caregivers consistently report unmet needs and there has been a dearth of rigorous supportive interventions published. In addition, comprehensive conceptual frameworks to navigate the family caregiver experience and guide intervention development are lacking. This article draws on Lazarus and Folkman's seminal work on the transactional stress and coping framework to present a conceptual model specific to family caregivers of patients receiving palliative care. A comprehensive account of key variables to aid understanding of the family caregiver experience and intervention design is provided.

When care is left to roam: Carers' experiences of grassroots nonprofit services in Ireland

Increasingly countries are turning to nonprofit organisations to provide health and social care, particularly for people with disabilities. Alongside this change, debates continue about how states should manage the relationship with such organisations. Should features of the old-style "welfare" model be retained? Should aspects of the "new public management" model be chosen to measure the impact of the work? Yet others argue that grassroots organisations should form the basis of a service provision system. In the context of these debates, Ireland serves as an interesting case study of the system of care that can emerge when the state operates a "relaxed control" approach. This paper takes the perspectives of users themselves: family carers who are accessing services for a disabled adult child, to examine the effects of this approach on the ground. We show how geography played a central role in shaping these experiences, and discuss how we can learn from the Irish context. Rather than arguing for narrowly defined contractual measures, we conclude by proposing a renewed focus on relationship building with the aim of effective system operation, in the future of care services. © 2010 Elsevier Ltd.

Intermediate Care: The Role of Medicines Management

Healthcare systems worldwide are facing an unprecedented demographic change as globally, the number of older people will triple to 2 billion by the year 2050. The resulting pressures on acute services have been instrumental in the development of intermediate care (IC) as a new healthcare model, which has its origins in the National Health Service in the UK. IC is an umbrella term for patient services that do not require the resources of a general hospital but are beyond the scope of a traditional primary care team. IC aims to promote timely discharge from hospital, prevent unnecessary hospital admissions and reduce the need for long-term residential care by optimizing functional independence. Various healthcare providers around the world have adopted similar models of care to manage changing healthcare needs. Polypharmacy, along with age-related changes, places older people at an increased risk of adverse drug events, including inappropriate prescribing, which has been shown to be prevalent in this population in other healthcare settings. Medicines management (the practice of maximizing health through optimal use of medicines) of older people has been discussed in the literature in a variety of settings; however, its place within IC is largely unknown. Despite IC being a multidisciplinary healthcare model, there is a lack of evidence to suggest that enhanced pharmaceutical involvement is core to the service provided within IC. This review article highlights the gap in the literature surrounding medicines management within IC and identifies potential solutions aimed at improving patient outcomes in this setting.

Pain in care home residents with dementia: an exploration of frequency, prescribing and relatives' perspectives

Objectives: This study aims to determine pain frequency amongst care home residents with dementia, to investigate variables associated with pain, to explore analgesic use among residents and to seek residents' relatives' views on provision of care and management of pain by the care home. Methods: Structured face-to-face interviews were conducted with residents, nursing staff and relatives from nine dementia care homes in Northern Ireland, between May 2010 and March 2012. Demographic information was collected from participants, neuropsychiatric tests were used to assess residents' cognitive functioning, medication use was determined from care home records and residents' pain was assessed using a verbal descriptor scale. Relatives' views were sought on care provision and management of pain. Results: Forty-two residents, 16 nurses/care assistants and 35 relatives participated; the participation rate of residents was low (27.6%). Most residents were suffering moderate-severe dementia, and some residents (26.2%) were unable to provide a self-report of pain. A significantly higher proportion of relatives (57.1%) deemed residents to be experiencing pain at the time of the interview, compared with residents (23.8%, p = 0.005) and nurses/care assistants (42.9%, p = 0.035). Most residents (88.1%) were prescribed with analgesia; non-opioid analgesics were most commonly prescribed. High proportions of residents were prescribed with psychoactive medications. Antipsychotic drug use was associated with presence of pain (p = 0.046). Conclusions: This study has reinforced the challenge of assessing and managing pain in this resident population and highlighted issues to be addressed by long-term care providers and clinicians. Participation of people with dementia, and their families, in healthcare research needs to be improved.

Women (Re)Negotiating Care across Family Generations: Intersections of Gender and Socioeconomic Status

Changing Generations, a study of intergenerational relations in Ireland undertaken between 2011 and 2013 by the Social Policy and Ageing Research Centre (SPARC), Trinity College, Dublin, and the Irish Centre for Social Gerontology (ICSG), NUI Galway, used the Constructivist Grounded Theory method to interrogate support and care provision between generations. This article draws on interviews with 52 women ages 18 to 102, allowing for simultaneous analysis of older and younger women’s perspectives. The intersectionality of gender and class emerged as central to the analysis. Socioeconomic positions shape contrasting forms of interdependency among family generations, ranging from “enmeshed” lives among lower socioeconomic groups to “freed” lives among higher socioeconomic groups. Women are initiating changes in how care and support flow across generations. Older women in higher socioeconomic groups are attuned to how emotional capital women expend across family generations can constrain (young) women’s lives. In an expression of solidarity, older women are renegotiating the place of care labor in their own lives and in the lives of younger women. A new reciprocity emerges that amounts to women “undoing gender.” This process is, however, deeply classed as it is women in higher socioeconomic groups whose resources best place them to renegotiate care.

Measuring horizontal integration among health care providers in the community: An examination of a collaborative process within a palliative care network

In many countries formal or informal palliative care networks (PCNs) have evolved to better integrate community-based services for individuals with a life-limiting illness. We conducted a cross-sectional survey using a customized tool to determine the perceptions of the processes of palliative care delivery reflective of horizontal integration from the perspective of nurses, physicians and allied health professionals working in a PCN, as well as to assess the utility of this tool. The process elements examined were part of a conceptual framework for evaluating integration of a system of care and centred on interprofessional collaboration. We used the Index of Interdisciplinary Collaboration (IIC) as a basis of measurement. The 86 respondents (85% response rate) placed high value on working collaboratively and most reported being part of an interprofessional team. The survey tool showed utility in identifying strengths and gaps in integration across the network and in detecting variability in some factors according to respondent agency affiliation and profession. Specifically, support for interprofessional communication and evaluative activities were viewed as insufficient. Impediments to these aspects of horizontal integration may be reflective of workload constraints, differences in agency operations or an absence of key structural features.

Urban and rural differences in risk of admission to a care home: a census-based follow-up study

Research on admissions to care homes for older people has paid more attention to individual and social characteristics than to geographical factors. This paper considers rural-urban differences in household composition and admission rates. Cohort: 51,619 people aged 65 years or older at the time of the 2001 Census and not living in a care home, drawn from a data linkage study based on c.28% of the Northern Ireland population.Living alone was less common in rural areas; 25% of older people in rural areas lived with children compared to 18% in urban areas. Care home admission was more common in urban (4.7%) and intermediate (4.3%) areas than in rural areas (3.2%). Even after adjusting for age, sex, health and living arrangements, the rate of care home admission in rural areas was still only 75% of that in urban areas.People in rural areas experience better family support by living as part of two or three generation households. Even after accounting for this difference, older rural dwellers are less likely to enter care homes; suggesting that neighbours and relatives in rural areas provide more informal care; or that there may be differential deployment of formal home care services.

Evaluation of a partnership between primary and secondary care providing an accessible Level 1 sexual health service in the community

Comprehensive testing for asymptomatic sexually transmitted infections in Northern Ireland has traditionally been provided by genitourinary medicine clinics. As patient demand for services has increased while budgets have remained limited, there has been increasing difficulty in accommodating this demand. In May 2013, the newly commissioned specialist Sexual Health service in the South Eastern Trust sought to pilot a new model of care working alongside a GP partnership of 12 practices. A training programme to enable GPs and practice nurses to deliver Level 1 sexual health care to heterosexual patients aged >16 years, in accordance with the standards of BASHH, was developed. A comprehensive care pathway and dedicated community health advisor supported this new model with close liaison between primary and secondary care. Testing for Chlamydia, gonorrhoea, HIV and syphilis was offered. The aims of the pilot were achieved, namely to provide accessible, cost-effective sexual health care within a framework of robust clinical governance. Furthermore, it uncovered a high positivity rate for Chlamydia, especially in young men attending their general practice, and demonstrated a high level of patient satisfaction. Moreover the capacity of secondary care to deliver Levels 2 and 3 services was increased.

'Every pregnant woman needs a midwife'--the experiences of HIV affected women in maternity care

TITLE: 'Every pregnant woman needs a midwife'-the experiences of HIV affected women in Northern Ireland.

OBJECTIVE: to explore HIV positive women's experiences of pregnancy and maternity care, with a focus on their interactions with midwives.

DESIGN: a prospective qualitative study.

SETTING: regional HIV unit in Northern Ireland.

PARTICIPANTS: 22 interviews were conducted with 10 women at different stages of their reproductive trajectories.

FINDINGS: the pervasive presence of HIV related stigma threatened the women's experience of pregnancy and care. The key staff attributes that facilitated a positive experience were knowledge and experience, empathy and understanding of their unique needs and continuity of care.

KEY CONCLUSIONS: pregnancy in the context of HIV, whilst offering a much needed sense of normality, also increases woman's sense of anxiety and vulnerability and therefore the need for supportive interventions that affirm normality is intensified. A maternity team approach, with a focus on providing 'balanced care' could meet all of the woman and child's medical needs, whilst also emphasising the normalcy of pregnancy.

Metastatic non-small cell lung cancer: a benchmark for quality end-of-life cancer care?

Objectives: To investigate the quality of end-of-life care for patients with metastatic non-small cell lung cancer (NSCLC). Design and participants: Retrospective cohort study of patients from first hospitalisation for metastatic disease until death, using hospital, emergency department and death registration data from Victoria, Australia, between 1 July 2003 and 30 June 2010. Main outcome measures: Emergency department and hospital use; aggressiveness of care including intensive care and chemotherapy in last 30 days; palliative and supportive care provision; and place of death. Results: Metastatic NSCLC patients underwent limited aggressive treatment such as intensive care (5%) and chemotherapy (< 1%) at the end of life; however, high numbers died in acute hospitals (42%) and 61% had a length of stay of greater than 14 days in the last month of life. Although 62% were referred to palliative care services, this occurred late in the illness. In a logistic regression model adjusted for year of metastasis, age, sex, metastatic site and survival, the odds ratio (OR) of dying in an acute hospital bed compared with death at home or in a hospice unit decreased with receipt of palliative care (OR, 0.25; 95% CI, 0.21–0.30) and multimodality supportive care (OR, 0.65; 95% CI, 0.56–0.75). Conclusion: Because early palliative care for patients with metastatic NSCLC is recommended, we propose that this group be considered a benchmark of quality end-of-life care. Future work is required to determine appropriate quality-of-care targets in this and other cancer patient cohorts, with particular focus on the timeliness of palliative care engagement.

A Qualitative Exploration of Perceived Key Knowledge and Skills in End-of-Life Care in Dementia Patients among Medical, Nursing, and Pharmacy Students

Background: The steady increase in the number of people living and dying with dementia, coupled with the recent focus on quality of care, has highlighted the importance of dementia training for health care professionals. This exploratory study aimed to discover which skills health care students felt were important in providing quality end-of-life care to dementia patients.

Methods: Ninety-four medicine, nursing, and pharmacy students participated in a larger study using open-ended and closed questions to explore attitudes related to caring for dementia patients at the end of life. This study looks at the student responses to an open-ended question regarding the skills and knowledge they believe are needed to provide end-of-life care to dementia patients. Individual responses were reviewed by the researchers, coded into key issues, and tabulated for frequency of occurrences and group differences.

Results: Several common issues emerged: knowledge, patience, empathy, understanding, family involvement, compassion, medication knowledge, respect/patient autonomy, communication, quality of life, and patient education. Significant differences were observed among the participant groups on the following issues: Patience and understanding (pharmacy students mentioned these issues less frequently than medical and nursing students), compassion (medical students mentioned this issue more frequently than pharmacy students), and medication knowledge (pharmacy students mentioned this issue more frequently than medical and nursing students).

Conclusions: Different health care disciplines (in-training) value different skill sets for the provision of dementia care at the end-of-life. As health care education for dementia patients at the end of life is expanded, it will be important to understand which skills both patients and health care students value.

A qualitative study of community pharmacists’ awareness of and involvement with intermediate care facilities

Rationale, aims and objectives: Intermediate care (IC) describes a range of services targeted at older people, aimed at preventing unnecessary hospitalisation, promoting faster recovery and maximising independence. The introduction of IC has created a new interface between primary and secondary care. Older people are known to be at an increased risk of medication-related problems when transferring between healthcare settings and pharmacists are often not included as part of IC multidisciplinary teams. This study aimed to explore community pharmacists’ (CPs) awareness of IC services and to investigate their views of and attitudes towards the medicines management aspects of such services, including the transfer of medication information.

Method: Semi-structured interviews were conducted, recorded, transcribed verbatim and analysed using a constant comparative approach with CPs practising in the vicinity of IC facilities in Northern Ireland, UK.

Results: Interviews were conducted with 16 CPs. Three themes were identified and named ‘left out of the loop’, ‘chasing things up’ and ‘closing the loop’. CPs felt that they were often ‘left out of the loop’ with regards to both their involvement with local IC services and communication across the healthcare interfaces. As a result, CPs resorted to ‘chasing things up’ as they had to proactively try to obtain information relating to patients’ medications. CPs viewed themselves as ideally placed to facilitate medicines management across the healthcare interfaces (i.e., ‘closing the loop’), but several barriers to potential services were identified.

Conclusion: CPs have limited involvement with IC services. There is a need for improvement of effective communication of patients’ medication information between secondary care, IC and community pharmacy. Increasing CP involvement may contribute to improving continuity of care across such healthcare interfaces, thereby increasing the person-centeredness of service provision.

PAlliative Care in chronic Kidney diSease: the PACKS study—quality of life, decision making, costs and impact on carers in people managed without dialysis

BACKGROUND: The number of patients with advanced chronic kidney disease opting for conservative management rather than dialysis is unknown but likely to be growing as increasingly frail patients with advanced renal disease present to renal services. Conservative kidney management includes ongoing medical input and support from a multidisciplinary team. There is limited evidence concerning patient and carer experience of this choice. This study will explore quality of life, symptoms, cognition, frailty, performance decision making, costs and impact on carers in people with advanced chronic kidney disease managed without dialysis and is funded by the National Institute of Health Research in the UK.

METHODS: In this prospective, multicentre, longitudinal study, patients will be recruited in the UK, by renal research nurses, once they have made the decision not to embark on dialysis. Carers will be asked to 'opt-in' with consent from patients. The approach includes longitudinal quantitative surveys of quality of life, symptoms, decision making and costs for patients and quality of life and costs for carers, with questionnaires administered quarterly over 12 months. Additionally, the decision making process will be explored via qualitative interviews with renal physicians/clinical nurse specialists.

DISCUSSION: The study is designed to capture patient and carer profiles when conservative kidney management is implemented, and understand trajectories of care-receiving and care-giving with the aim of optimising palliative care for this population. It will explore the interactions that lead to clinical care decisions and the impact of these decisions on informal carers with the intention of improving clinical outcomes for patients and the experiences of care givers.

Understanding informal kinship care: a critical narrative review of theory and research

Many children are cared for on a full-time basis by relatives or adult friends, rather than their biological parents, and often in response to family crises. These kinship care arrangements have received increasing attention from the social science academy and social care professions. However, more information is needed on informal kinship care that is undertaken without official ratification by welfare agencies and often unsupported by the state. This article presents a comprehensive, narrative review of international, research literature on informal, kinship care to address this gap. Using systematic search and review protocols, it synthesises findings regarding: (i) the way that informal kinship care is defined and conceptualised; (ii) the needs of the carers and children; and (iii) ways of supporting this type of care. A number of prominent themes are highlighted including the lack of definitional clarity; the various adversities experienced by the families; and the requirement to understand the interface between formal and informal supports. Key messages are finally identified to inform the development of family friendly policies, interventions, and future research.

A “Child’s Rights Perspective”: The “Right” of Children and Young People to Participate in Health Care Research

As all human beings are consumers of health care provision across the life span and in receipt of care delivered by accountable health care professionals, all should have the right to be involved in shaping the future of their own health care. Rights-based participation, when applied successfully, has the potential to inform and influence the delivery of child health care, the child’s experience of health care, plus children’s nursing education (Coyne & Gallagher, 2011). The “right” of every child and young person to participate in research that relates to their own health care is also sustained by the author’s lead position as a Senior Lecturer in Higher Education for pre-registration children’s nursing in Northern Ireland and the appreciation of their voice when practicing as a registered children’s nurse and ward sister. The report provides an insight into seminal work on human and child rights; the historical context of children in Western society, and the evolution of children’s nursing amid the child’s right to participate in shaping their own health care.