How does involvement of a hospice nurse specialist impact on the experience on informal caring in palliative care? Perspectives of middle-aged partners bereaved through cancer

The aim of this study was to retrospectively explore partners' understandings and experiences in relation to caring for a loved one with a terminal illness, with a particular focus on the role of the hospice nurse specialist (HNS). Participants were purposively sampled and recruited through HNS gatekeepers. Seven middle-aged, bereaved partners participated in semi-structured, qualitative interviews. The interviews were audio recorded and transcribed verbatim and data were analysed using thematic content analysis. Five main themes emerged regarding the impact of the HNS on informal caring: ‘the ambivalence of caring’, ‘the HNS as a “confidante” in caring’, ‘the HNS as a “champion” in support’, ‘the work of the HNS – an unseen benefit’ and ‘being prepared for death and bereavement’. Findings from this study offer new insights into how involvement of a HNS impacts on the ability of carers to perform their role as an informal caregiver. Results highlight a crucial need for carers to have a clear understanding of all aspects of the HNS role so that full benefit is derived from their input. Recruitment of experienced and knowledgeable nurses is paramount, but equally important for carers is the supportive aspect of the role for which nurses need to demonstrate excellent communication skills and an intuitive, caring approach.

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.

Life situations and the care burden for stroke pa­tients and their informal caregivers in a prospective cohort study

Background. The purpose of this study was to analyse whether the parallel life situation between stroke patients and their informal caregivers (dyads) shown in cross-sectional studies prevails also in a longitudinal perspective. Methods. A total of 377 Swedish stroke patients, aged ‡65 years, and their 268 informal caregivers were followed from hospital admission and one year on. Analyses were based on patient interviews, functional ability (MMSE) score, Nottingham Health Profile (NHP) score, Hospital Anxiety and Depression (HAD) score, self-rated health score, and the Gothenburg Quality of Life (GQL) activity score. Similar information was obtained by postal questionnaires from informal caregivers, also including information on the nature and amount of assistance provided and on Caregiver Burden (CB) score. Results. Before index admission informal caregivers provided care on average 5 h per week and after discharge 11 h per week (P < 0.0001). Support volume was associated with patient sex (more for men), low patient’s functional ability, low received municipal social service support, closeness of patient–caregiver relation, and short distance to patient’s home. Significant positive associations within the dyads were found for HAD anxiety score (P < 0.0001), total NHP score (P < 0.0001), and GQL activity score (P < 0.0001) after adjustment for patient’s age, sex, functional ability, and patient–caregiver relationship. CB score increased with amount of informal caregiver support, patient’s age, and with low functional ability and low amount of municipal social service support. All these associations were constant across time. Conclusions. There was an association within the dyads regarding anxiety score, NHP score, and activity score. CB score was generally high.

Generalized resistance resources of informal caregivers: A study of demands for care, competing demands, perception of burden and cognitive stress

This study examines the relationship among psychological resources (generalized resistance resources), care demands (demands for care, competing demands, perception of burden) and cognitive stress in a selected population of primary family caregivers. The study utilizes Antonovsky's Salutogenic Model of Health, specifically the concept of generalized resistance resources (GRRs), to analyze the relative effect of these resources on mediating cognitive stress, controlling for other care demands. The study is based on a sample of 784 eligible caregivers who (1) were relatives, (2) had the main responsibility for care, defined as a primary caregiver, and (3) provided a scaled stress score for the amount of overall care given to the care recipient (family member). The sample was drawn from the 1982 National Long-Term Care Survey (NLTCS) of individuals who assisted a given NLTCS sample person with ADL limitations.^ The study tests the following hypotheses: (a) There will be a negative relationship between generalized resistance resources (GRRs) and cognitive stress controlling for care demands (demands for care, competing demands, and perceptions of burden); (b) of the specific GRRs (material, cognitive, social, cultural-environmental) the social domain will represent the most significant factor predicting a decrease in cognitive stress; and (c) the social domain will be more significant for the female than the male primary family caregiver in decreasing cognitive stress.^ The study found that GRRs had a statistically significant mediating effect on cognitive stress, but the GRRs were a less significant predictor of stress than perception of burden and demands for care. Thus, although the analysis supported the underlying hypothesis, the specific hypothesis regarding GRRs' greater significance in buffering cognitive stress was not supported. Second, the results did not demonstrate the statistical significance or differences among the GRR domains. The hypothesis that the social GRR domain was most significant in mediating stress of family caregivers was not supported. Finally, the results confirmed that there are differences in the importance of social support help in mediating stress based on gender. It was found that gender and social support help were related to cognitive stress and gender had a statistically significant interaction effect with social support help. Implications for clinical practice, public health policy, and research are discussed. ^

iCarer Project: Intelligent Care Guidance and Learning Services Platform for Informal Carers of the Elderly

The increasing ageing population is demanding new care approaches to maintain the quality of life of elderly people. Informal carers are becoming crucial agents in the care and support of elderly people, which can lead to those carers suffering from additional stress due to competing priorities with employment or due to lack of knowledge about elderly people?s care needs. Thus, support and stress relief in carers should be a key issue in the home-care process of these older adults. Considering this context, this work presents the iCarer project aimed at developing a personalized and adaptive platform to offer informal carers support by means of monitoring their activities of daily care and psychological state, as well as providing an orientation to help them improve the care provided. Additionally, iCarer will provide e-Learning services and an informal carers learning network. As a result, carers will be able to expand their knowledge, supported by the experience provided by expert counsellors and fellow carers. Additionally, the coordination between formal and informal carers will be improved, offering the informal carers flexibility to organize and combine their assistance and social activities.

Information and behavioural instruction along the health-care pathway:the perspective of people undergoing hernia repair surgery and the role of formal and informal information sources

Provision of information and behavioural instruction has been demonstrated to improve recovery after surgery. However, patients draw on a range of information sources and it is important to establish which sources patients use and how this influences perceptions and behaviour as they progress along the surgical pathway. In this qualitative, exploratory and longitudinal study, the use of information and instruction were explored from the perspective of people undergoing inguinal hernia repair surgery. Seven participants undergoing inguinal hernia repair surgery were interviewed using semi-structured interviews 2 weeks before surgery and 2 weeks and 4 months post-surgery. Nineteen interviews were conducted in total. Topic guides included sources of knowledge, reasons for help-seeking and opting for surgery and factors influencing return to activity. Data were analysed thematically according to Interpretative Phenomenological Analysis. Participants sought information from a range of sources, focusing on informal information sources before surgery and using information and instruction from health-care professionals post-surgery. This information influenced behaviours including deciding to undergo surgery, use of pain medication and returning to usual activity. Anxiety and help-seeking resulted when unexpected post-surgical events occurred such as extensive bruising. Findings were consistent with psychological and sociological theories. Overall, participants were positive about the information and instruction they received but expressed a desire for more timely information on post-operative adverse events.

Informal caring networks for people at end of life: Building social capital in Australian communities

The care of a person living at home near the end of their life is predominantly provided by family carers with the support of health services such as palliative care. In addition, informal caring networks also contribute at times to the support to the dying person and their carer. In this way, these networks can promote social capital in the communities from which they are drawn. This social approach to end of life care enhances community capacity to provide support to those dying at home and their carers. This article examines relevant published literature to explore the conceptual foundations of informal caring networks, examining the place of social capital and community development in the provision of end of life care at home, particularly in the Australian context.

Turnover intentions of employees with informal eldercare responsibilities: The role of core self-evaluations and supervisor support

As longevity increases, so does the need for care of older relatives by working family members. This research examined the interactive effect of core self-evaluations and supervisor support on turnover intentions in two samples of employees with informal caregiving responsibilities. Data were obtained from 57 employees from Australia (Study 1) and 66 employees from the United States and India (Study 2). Results of Study 1 revealed a resource compensation effect, that is, an inverse relationship between core self-evaluations and turnover intentions when supervisor care support was low. Results of Study 2 extended these findings by demonstrating resource boosting effects. Specifically, there was an inverse relationship between core self-evaluations and subsequent turnover intentions for those with high supervisor work and care support. In addition, employees' satisfaction and emotional exhaustion from their work mediated the inverse relationship between core self-evaluations and subsequent turnover intentions when supervisor work support and care support were high. Overall, these findings highlight the importance of employee- and supervisor-focused intervention strategies in organizations to support informal caregivers.

Confidentiality issues in information systems in social care

Cooper, J. & Urquhart, C. (2004). Confidentiality issues in information systems in social care. In K. Grant, D.A. Edgar & M. Jordan (Eds.), Reflections on the past, making sense of today and predicting the future of information systems, 9th annual UKAIS (UK Academy of Information Systems) conference proceedings, Annual conference, 5-7 May 2004, Glasgow Caledonian University (CD-ROM). Glasgow: Glasgow Caledonian University for UKAIS Sponsorship: AHRC

User perspective on palliative care services: experiences of middle-aged partners bereaved through cancer known to social work services in Northern Ireland

This qualitative research study explores experiences of partners bereaved through cancer, who were resident in an urban area of Northern Ireland and who had been service users of the social work services. Data were collected in 2004 from 10 individuals who participated in semi-structured interviews. Emergent themes were identified using thematic content analysis and findings analysed under four categories: cancer journey; impact of bereavement; process of adjustment and change; and experience of support services. Opportunities to facilitate communication were not always maximised, often resulting in poor bereavement outcomes. Although hospices undertook bereavement risk assessment, participants were unaware of its use and queried its accuracy without service user involvement. The most cited informal support was family and friends, although such help was time-limited. Service user feedback regarding social workers was generally positive; however, there was a lack of knowledge about their role in palliative care. Post-bereavement adjustment was influenced by the quality of social networks, the responsibilities of lone parenthood, and challenges to life values and core beliefs. A framework for palliative care social work has been recommended based on research findings.