Disorder and disconnection: parent experiences of liminality when caring for a dying child

Parents caring for a child with a life threatening or life limiting illness experience a protracted and largely unknown journey, as they and their child oscillate somewhere between life and death. Using an interpretive qualitative approach, interviews were conducted with parents (n = 25) of children who had died. Findings reveal parents’ experiences to be characterised by personal disorder and transformation as well as social marginalisation and disconnection. As such they confirm the validity of understanding these experiences as, fundamentally, one of liminality, in terms of both individual and collective response. In dissecting two inter-related dimensions of liminality, an underlying tension between how transition is subjectively experienced and how it is socially regulated is exposed. In particular, a structural failure to recognise the chronic nature of felt liminality can impede parents’ effective transition.

No second chance: junior neonatal nurses' experiences of caring for babies at the end-of-life and their families

Death of an infant is acutely stressful for parents and professionals. Little is known about junior nurses' experiences providing end-of-life care in Neonatal units (NNU). This study aimed to better understand junior nurses' experiences providing end-of-life care in NNU. Neonatal nurses (n = 12) with less than 3 years experience participated in a focus group. Nominal Group Technique (NGT) was used to build consensus around the challenges faced, alongside suggested developments in improving future care provision. Primary analysis involved successive rounds of ranking and decision-making whilst secondary analysis involved thematic analysis. All issues, whether environmental, professional or social appeared driven by an awareness on the part of nurses, that there was no ‘second chance’ which created a huge pressure to ‘get if right’ for the infants and families. Regarding future care 2 areas of improvement identified were ‘Education and Training’ and Support. This paper unpacks these findings making recommendations for practice.

Caring for the bereaved father in the NICU

This refelctive paper explores the issues surrounding the support of a bereaved father (his wife died during childbirth) whose baby was in the NICU

The contested notion of a pluralist School Ethos

Debates around the importance of school ethos have gathered pace in recent years. Whilst it is not clear why this concept has become increasingly important in the educational vernacular the marketisation of education seems to have had some effect. As schools are forced to compete they have become concerned to identify and promote their 'Unique Selling Points' as a means of attracting and maintaining a long term 'customer' base. Defining a school in terms of its particular 'ethos' therefore offers a useful means of identifying and encapsulating the particular strengths of the school. It is thus not uncommon for heads to market their schools on the basis of their endorsing a 'liberal ethos' a 'caring ethos' or a 'sporting ethos' (Gardner, 2003).

The purpose of this chapter is to use empirical evidence to explore the meaning of a 'pluralist ethos' or 'integrated ethos', within the integrated school context in Northern Ireland.

Oesophageal cancer: caregiver mental health and strain

Objective: To investigate strain and mental health among family caregivers of oesophageal cancer patients and possible factors associated with caregiver mental health and strain.

Methods: Patients with oesophageal adenocarcinoma in Ireland were recruited into the FINBAR study (the main aim of which was to investigate factors influencing the Barrett's adenocarcinoma relationship). Carers completed the 13-item Caregiver Strain Index and the General Health Questionnaire-30 (GHQ) in the context of a brief interview with trained research staff that was undertaken separately from the interview with each cancer patient.

Results: Two hundred and twenty-seven patients participated in the FINBAR study. A total of 39 patients did not have a family carer or the carer could not be identified. Fifty percent (94/188) of carers completed the questionnaires. Mean (SD) scores for strain (6.65, SD=3.63) and mental health status (10.21, SD=7.30) were high and 71% of carers scored >5 on the GHQ indicating psychological distress. There was a statistically significant positive relationship between level of strain experienced by caregivers and the severity of their mental health status and whether or not carers scored >5 on the GHQ. Relatives were 1.70 (95% CI 1.34-2.15) times more likely to be defined as high scorers with each unit increase in the CSI score.

Conclusions: A significant proportion of caregivers experienced high levels of strain and psychological distress. There is a need to provide appropriate support and services targeted specifically at reducing the considerable strain of caring for patients with oesophageal cancer, particularly for carers of patients from lower socioeconomic groups.

40 years is an awful long time

ABSTRACT: Older people who are caring for their adult sons and daughters with disabilities are under tremendous stress because they may suffer health problems themselves; have financial problems due a lifetime of caring; may have to care on their own due to the death of their spouse; worry about the future care of their child; and may feel uncomfortable approaching professionals for help. Professionals working with these families need to take contextual pressures into consideration when planning intervention. Twenty-nine parents of 27 adults with intellectual and/or developmental disabilities (including autism) were asked about present care and service arrangements, health issues, family support, and “futures planning.” The research reported here identifies complex networks of relationships. Virtual absence of structured futures planning was one of the key issues. Recommendations are made for professionals working in this field.

Managing time: integration of care and paid work amongst low income families and the role of the United Kingdom’s tax credit system

Under the New Labour Governments in the UK, successive reforms of the tax and benefit system sought to improve the financial benefits of paid work. Drawing on two waves of qualitative interviews with low-income working families this article examines the role of the UK tax credit system in shaping decisions about employment and unpaid care work. The article suggests that the financial support provided for lone parent participants by the tax credit system enhanced their temporal autonomy, permitting participation in paid work to align more closely with temporally situated notions of parental responsibility for caring. For couple families however, parental perceptions of responsibility for pre-school children, along with childcare constraints and the structure of the tax credit system served to constrain the autonomy of the main carer and implicitly encourage a gendered specialisation in caring or employment.

A comparative study of nursing attitudes towards young male survivors of brain injury: A questionnaire survey.

Background The attitudes members of the nursing profession hold towards survivors of brain injury may impact on the level of help, and degree of involvement they are willing to have. Given that the manner in which an individual receives their brain injury has been shown to impact on public prejudices, the importance of exploring nursing attitudes to this vulnerable group, and the subsequent impact this may have on the caring role, requires investigation. Objective To investigate the attitudes held by members of the nursing profession towards young male survivors of brain injury whose behaviour either contributed, or did not contribute, to their injury. Design Independent groups design. Setting and participants Ninety trainee and sixty-nine qualified nurses respectively drawn from a university in the south west of England and the emergency, orthopaedic and paediatric Departments of the Royal Devon and Exeter Hospital, UK. Methods Participants were randomly assigned to one of four fictional brain injury scenarios. A young male character was portrayed as sustaining a brain injury as a result of either an aneurysm, or through drug taking, with their behaviour being either a contributory or non-contributory factor. On reading these, participants were asked to complete the prejudicial evaluation scale, the social interaction scale and the helping behaviour scale. Results Analysis of variance showed that qualified nurses held more prejudicial attitudes than student nurses towards survivors of brain injury. Mean scores indicated that individuals seen as contributing towards their injury were likely to experience more prejudice (blame total = 42.35 vs. no blame total = 38.34), less social interaction (blame total = 37.54 vs. no blame total = 41.10), and less helping behaviour (blame total = 21.49 vs. no blame total = 22.34) by both groups. Conclusions Qualified nurses should be mindful of the impact their attitudes and judgements of survivors of brain injury may have on the subsequent care they provide. Greater emphasis on the effects of negative attitudes on patient interactions during training may provide nurses with the understanding to recognise and avoid challenges to their caring role in the future.

The good, the bad and the 'not so bad': reflecting on moral appraisal in practice

The aim of this paper is to facilitate reflection on the moral merit of practitioners in various contexts. Insight is gained from Aristotelian and Kantian accounts of moral character and an original framework for reflection is presented as an adjunct to ethical theory and principles considered when appraising others. In relation to states of character there is an irreconcilable difference between Kantian (deontic) and Aristotelian (aretaic) conceptions of the nature of full virtue (excellence of character), but at the same time it can be argued that in relation to practice their approaches complement each other. It is also argued that in relation to caring for the vulnerable, Aristotle’s conception of full virtue is more compelling than Kant’s. On the other hand, Kant’s notion of self - serving action is important in nursing and it therefore needs to be considered when reflecting on professional conduct. The conclusion reached is that Aristotelian and Kantian accounts of character appraisal should be used in a combined approach to moral appraisal. This approach draws on the accounts of both philosophers and offers valuable insight into moral character, professional conduct and, in a more formal setting, fitness to practise.

Current brood size and residual reproductive value predict offspring desertion in the burying beetle Nicrophorus vespilloides

Life-history theory suggests that offspring desertion can be an adaptive reproductive strategy, in which parents forgo the costly care of an unprofitable current brood to save resources for future reproduction. In the burying beetle, Nicrophorus vespilloides, parents commonly abandon their offspring to the care of others, resulting in female-only care, male-only care, brood parasitism, and the care of offspring sired by satellite males. Furthermore, when there is biparental care, males routinely desert the brood before larval development is complete, leaving females behind to tend their young. We attempted to understand these patterns of offspring desertion by using laboratory experiments to compare the fitness costs associated with parental care for each sex and the residual reproductive value of the 2 sexes. We also tested whether current brood size and residual reproductive value together predicted the incidence of brood desertion. We found that males and females each sustained fecundity costs as a consequence of caring for larvae and that these costs were of comparable magnitude. Nevertheless, males had greater residual reproductive value than females and were more likely than females to desert experimental broods. Our results can explain why males desert the brood earlier than females in nature and why female-only care is more common than male-only care. They also suggest that the tipping point from brood parasitism or satellite male behavior to communal breeding (and vice versa) depends on the value of the current brood relative to residual reproductive value.

'Wee women no more': female partners of republican political prisoners in Belfast

Studies of the female partners of politically motivated prisoners have generally studied women via a caring paradigm. Less well observed are those women who privately transgressed and challenged masculine-centred renditions or political imprisonment. This lacuna in the research dedicated to such women has been constructed around stereotypical depictions of them as a barely visible support network. We argue that the relatively indiscernible appearance of women who challenged such typecasting is attached to a persistent process of gender blindness within which women remain peripheral to wider narratives of collectivity and ideological presentation. We chart how some women actively involved themselves in creating their own identity as active agents, especially when the effects of conflict entered the private sphere.

Experiences of carers supporting dying renal patients managed without dialysis

Aim: To explore the impact of being a family carer to patients with stage 5 chronic kidney disease managed without dialysis.
Background: Increasing numbers of patients with renal disease worldwide are making the decision not to embark on dialysis. This group has significant physical and psychological symptom burdens similar to or greater than those in advanced cancer patients. Little is known about the impact on family carers.
Design: Exploratory, qualitative design.
Methods: The study was undertaken with 19 carers caring for patients managed in a Renal Supportive Care Service in the UK between 2006–2008. Sixty-one semi-structured interviews and detailed field notes inform the analysis.
Findings: ‘Caring from diagnosis to death’ was the overarching theme illustrated by three sub-themes: (i) Caregiver's plight – making sense of the disease and potential deterioration; (ii) Having to care indefinitely; and (iii) Avoiding talk of death. ‘Caring from diagnosis to death’ coincides with an original concept analysis of renal supportive care, which is considered an adjunct to the management of patients with renal disease at all stages of their illness.
Conclusion: There is a clear need for further research internationally and theory-based nursing interventions to support carers of patients managed without dialysis. The development of a holistic, integrated care pathway based on carer perspectives, which includes identification of information needs related to original diagnosis, associated comorbidities, treatment options, prognosis, and assistance in developing strategies to manage communication with patients as the end of life approaches, is required.

The Evaluation of an Interdisciplinary Pain Protocol in Long Term Care

Objectives: To evaluate the effectiveness of (1) dissemination strategies to improve clinical practice behaviors (eg, frequency and documentation of pain assessments, use of pain medication) among health care team members, and (2) the implementation of the pain protocol in reducing pain in long term care (LTC) residents. Design: A controlled before-after design was used to evaluate the effectiveness of the pain protocol, whereas qualitative interviews and focus groups were used to obtain additional context-driven data. Setting: Four LTC facilities in southern Ontario, Canada; 2 for the intervention group and 2 for the control group. Participants: Data were collected from 200 LTC residents; 99 for the intervention and 101 for the control group. Intervention: Implementation of a pain protocol using a multifaceted approach, including a site working group or Pain Team, pain education and skills training, and other quality improvement activities. Measurements: Resident pain was measured using 3 assessment tools: the Pain Assessment Checklist for Seniors with Limited Ability to Communicate, the Pain Assessment in the Communicatively Impaired Elderly, and the Present Pain Intensity Scale. Clinical practice behaviors were measured using a number of process indicators; for example, use of pain assessment tools, documentation about pain management, and use of pain medications. A semistructured interview guide was used to collect qualitative data via focus groups and interviews. Results: Pain increased significantly more for the control group than the intervention group over the 1-year intervention period. There were significantly more positive changes over the intervention period in the intervention group compared with the control group for the following indicators: the use of a standardized pain assessment tool and completed admission/initial pain assessment. Qualitative findings highlight the importance of reminding staff to think about pain as a priority in caring for residents and to be mindful of it during daily activities. Using onsite champions, in this case advanced practice nurses and a Pain Team, were key to successfully implementing the pain protocol. Conclusions: These study findings indicate that the implementation of a pain protocol intervention improved the way pain was managed and provided pain relief for LTC residents.

Service preferences among family caregivers of the terminally ill

Objective: The ability of families to assume caregiving responsibilities is contingent on material, social, and professional support. Inadequate or inappropriate support to the terminally ill and their family caregivers can result in the misuse of resources and add burden to the family. In this report, we describe service preferences among informal caregivers of the terminally ill. Design: Three hundred seventy-three caregivers participated in telephone interviews at two points in time: when the terminally ill person was designated as palliative and 5 months subsequent to the first interview. In the case that the care recipient died during the study period, the caregiver participated in the interview three months after the death. Measures: After reviewing possible services received by the care recipients and caregivers, caregivers were asked to identify the five services they found most valuable and which services they would have liked to have had or received more of when caregiving. Results: The five services caregivers reported as most valuable included: in-home nursing care, (90.7%); family physicians, (45.6%); medical specialists, (46.4%); housekeeping, (23.6%); and, religious support, (11.3%). The five most frequently reported services that family caregivers would have liked to have received or had more available included: housekeeping, (13.1%); caregiver respite, (10.2%); in-home nursing care, (8.0%); personal support workers, (4.6%); and, self-help/support groups, (3.8%). Analyses revealed that most (64.8%) perceived service needs were of a supportive nature for caregivers. Caregiver perceptions of the value and perceived need of services were consistent over time and into bereavement. Logistic regression analyses suggested that younger caregivers who were not employed, reported higher levels of burden and cared for someone with a diagnosis of cancer had greater perceived service needs. Conclusions: The findings reported in this paper provide important insights into caregiver perceptions of valued services when caring for a terminally ill family member. These finding also highlight the stability of caregiver service perceptions over time and into bereavement.

Gender differences among Canadian spousal caregivers at the end of life

The purpose of this study was to examine gender differences in spousal caregiving at the end of life. The primary research question was to determine gender differences in caregiver strain among spousal caregivers. Secondary research questions investigated included (i) the presence of gender differences among spousal caregivers in the duration of care provided; (ii) gender differences among spousal caregivers in formal service use and unmet service needs; and (iii) whether support to care recipients in activities of daily living varied according to the gender of the spousal caregiver. The study was conducted over a 2-year period (2000-2002) in south-central Ontario, Canada. The study sample included 283 informal spousal caregivers (198 females, 85 males) each of whom were caring for a terminally ill spouse at the time they participated in a cross-sectional telephone survey. The analysis showed that females reported a significantly greater level of caregiving strain than males (t = -2.12, d.f. = 281, P = 0.035). When considering source of support in activities of daily living for the care recipient, differential assistance was noted on the basis of caregiver gender. Female caregivers had almost twice the odds of providing support in toileting-related tasks than male caregivers (odds ratio (OR) = 1.98, 95% confidence interval (CI) = 1.01-3.85, P = 0.044), while male caregivers had approximately twice the odds of providing support in mobility-related tasks (OR = 0.41, 95% CI = 0.21-0.81, P = 0.011). Care recipients who had a female caregiver had lower odds of receiving support from family and friends in tasks associated with personal care (OR = 0.17, 95% CI = 0.05-0.53, P = 0.002). To address gender differences in caregiving, a realistic home-based palliative care approach must take into account the importance of informal caregivers. © 2008 Blackwell Publishing Ltd.