The stress process in palliative cancer care:A qualitative study on informal caregiving and its implication for the delivery of care

Objective: The primary objective of this study was to examine how the comprehensive nature of the Stress Process Model could elucidate on the stressors associated with caring for a palliative cancer patient. Method: A qualitative research strategy involving home-based face-to-face interviews with 12 bereaved family caregivers was used to examine the caregiving experience. Results: The primary stressors associated with caring for the palliative cancer care patients stemmed from care recipient symptoms and personal care needs. The absence of adequate support from the formal health care delivery system was a consistent message from all participants. There was evidence of financial stress primarily associated with the purchase of private home care to supplement formal care. In contrast, the resources that family caregivers relied on to moderate the stressful effects of caregiving included extended family, friends, and neighbors. While the stress of direct caregiving was high, the study revealed that formal care was also a significant source of stress for family caregivers. Conclusion: It was concluded that an appropriately financed, integrated system of care that followed a person-centered philosophy of care would best meet the needs of the patient and his or her family. © The Author(s) 2010.

Factors associated with home death for individuals who receive homesupportservices:A retrospective cohort study

Objectives: To determine the factors associated with a home death among older adults who received palliative care nursing home services in the home. Methods: The participants in this retrospective cohort study were 151 family caregivers of patients who had died approximately 9 months prior to the study telephone interview. The interview focused on the last year of life and covered two main areas, patient characteristics and informal caregiver characteristics. Results: Odds ratios [OR] and 95% confidence intervals [95% CI] were used to determine which of the 15 potential informal caregiver and seven patient predictor variables were associated with dying at home. Multivariate analysis revealed that the odds of dying at home were greater when the patient lived with a caregiver [OR = 7.85; 95% CI = (2.35, 26.27)], the patient stated a preference to die at home [OR= 6.51; 95% CI = (2.66,15.95)], and the family physician made home visits [OR = 4.79; 95% CI = (1.97,11.64)]. However the odds were lower for patients who had caregivers with fair to poor health status [OR = 0.22; 95% CI = (0.07, 0.65)] and for patients who used hospital palliative care beds [OR = 0.31; 95% CI = (0.12, 0.80)]. Discussion: The findings suggest that individuals who indicated a preference to die at home and resided with a healthy informal caregiver had better odds of dying at home. Home visits by a family physician were also associated with dying at home.

Living and coping with Parkinson's disease: Perceptions of informal carers

A review of the literature highlights the important role informal carers play in the provision of palliative care in the community. In order to explore the caring experience of relatives with Parkinson's Disease (PD), interviews were conducted with 26 informal family caregivers. Interviews were taped, transcribed and subjected to content analysis. All caregivers were spouses, the majority female (n=17) and all were responsible for providing physical, social and emotional care in the home. Although they viewed care giving as their role and duty, the results highlight the widespread burden of providing care on the emotional and physical health of the caregivers. The financial implications for providing care were outlined, with many reporting difficulty in accessing benefits. From the point of diagnosis, which had a huge emotional impact on relatives and carers, carers did not feel health professionals integrated them within the caring journey. Since diagnosis, carers commented on the lack of continued and coordinated care plans for relatives, resulting in symptoms being mismanaged and care opportunities for relatives and carers missed. Stereotypes of the meaning and timing of palliative care were common with many viewing it as being synonymous with cancer and not applicable to a person with PD. As the well-being of the informal carer directly influences the care of the person with PD, support interventions are required to relieve their burden, maximize outcomes and ensure targeting of services. © The Author(s) 2010.

Improving Patient Safety Through Formal and Informal Learning Networks

This paper explores a novel perspective on patient safety improvements, which draws on
contemporary social network and learning theories. A case study was conducted at a Portuguese
acute university hospital. Data collection followed a staged approach, whereby 46 interviews
were conducted involving 49 respondents from a broad array of departments and professional
backgrounds. This case study highlights the importance of two major interlinked factors in
contributing to patient safety improvements. The first of these is the crucial role of formal and
informal, internal and external social networks. The second is the importance and the possible
advantage of combining formal and informal learning. The analysis suggests that initiatives
rooted in formal learning approaches alone do not necessarily lead to the creation of long-term
grounded internal safety networks, and that patient safety improvements can crucially depend on
bottom-up initiatives of communities of practice and informal learning. Traditional research on
patient safety places a strong emphasis on top-down and managerialist approaches and is often
based on the assumption that „safety? learning is primarily formal and context-independent. This
paper suggests that bottom-up initiatives and a combination of formal and informal learning can
make a major contribute to patient safety improvements.

Digital loyalty card 'Big Data' and small business marketing: Formal versus informal or complementary?

This article proposes that a complementary relationship exists between the formalised nature of digital loyalty card data, and the informal nature of small business market orientation. A longitudinal, case-based research approach analysed this relationship in small firms given access to Tesco Clubcard data. The findings reveal a new-found structure and precision in small firm marketing planning from data exposure; this complemented rather than conflicted with an intuitive feel for markets. In addition, small firm owners were encouraged to include employees in marketing planning.

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.

The relationship between informal caregiving and mortality: an analysis using the ONS Longitudinal Study of England and Wales.

BACKGROUND:

Many studies have suggested that caregiving has a detrimental impact on health. However, these conclusions are challenged by research which finds evidence of a comparative survivorship advantage, as well as work which controls for group differences in the demand for care.

METHODS:

We use a large record linkage study of England and Wales to investigate the mortality risks of carers identified in the 2001 Census. The analysis focuses on individuals aged 35-74 living with others in private households and a distinction is made between those providing 1-19 and 20 or more hours of care per week. Logit models identify differences in carers' health at baseline and postcensal survival is analysed using Cox proportional hazards models.

RESULTS:

12.2% of study members reported providing 1-19 h of care and 5.4% reported providing 20 or more hours. While carers were significantly more likely to report poorer health at baseline, survival analyses suggested that they were at a significantly lower risk of dying. This comparative advantage also held when the analyses were restricted to individuals living with at least one person with poor health.

CONCLUSIONS:

The comparative mortality advantage revealed in this analysis challenges common characterisations of carers' health and draws attention to important differences in the way carers are defined in existing analyses. The survival results are consistent with work using similar data for Northern Ireland. However, the study also affords more uniform conclusions about carers' baseline health and this provides grounds for questioning existing hypotheses about the reasons for this advantage.

The challenge to health professionals when carers resist truth telling at the end of life: a qualitative secondary analysis

Aims and objectives: To draw out the similar complexities faced by staff around
truth-telling in a children’s and adult population and to interrogate the dilemmas faced by staff when informal carers act to block truth-telling.

Background: Policy encourages normalisation of death, but carers may act to protect or prevent the patient from being told the truth. Little is known about the impact on staff.

Design: Secondary analysis of data using a supra-analysis design to identify commonality of experiences.

Methods: Secondary ‘supra-analysis’ was used to transcend the focus of two primary studies in the UK, which examined staff perspectives in a palliative children’s and a palliative adult setting, respectively. The analysis examined new theoretical questions relating to the commonality of issues independently derived in each primary study. Both primary studies used focus groups. Existing empirical data were analysed thematically and compared across the studies.

Results: Staff reported a hiding of the truth by carers and sustained use of activities aimed at prolonging life. Carers frequently ignored the advance of end of life, and divergence between staff and carer approaches to truth-telling challenged professionals. Not being truthful with patients had a deleterious effect on staff, causing anger and feelings of incompetence.

Conclusions: Both children’s and adult specialist palliative care staff found themselves caught in a dilemma, subject to policies that promoted openness in planning for death and informal carers who often prevented them from being truthful with patients about terminal prognosis. This dilemma had adverse psychological effects upon many staff.

Relevance to clinical practice: There remains a powerful death-denying culture in
many societies, and carers of dying patients may prevent staff from being truthful with their patients. The current situation is not ideal, and open discussion of this problem is the essential first step in finding a solution.