Psychological and social profile of family caregivers upon commencement of palliative care provision

Context
Palliative care services are required to support patients who have advanced, life-threatening, noncurable disease, and their family caregivers. Comprehensive psychological and social support for bereaved family members also is expected. However, recent systematic reviews have demonstrated significant gaps in evidence-based approaches for such support. Furthermore, a comprehensive understanding of the psychological and social response to the family caregiver role is required for support to be optimized.

Objectives
We sought to examine the psychological and social profile of family caregivers on commencement of receiving palliative care services.

Methods
A self-report questionnaire was administered to primary family caregivers of patients within two weeks of admission to three palliative care services in Melbourne, Australia. The questionnaire incorporated six instruments that measured 11 family caregiver-related psychosocial factors; four instruments that measured caregiver psychological distress factors; 14 mental health lifetime risk factors; and a sociodemographic questionnaire.

Results
Three hundred and two family caregivers participated. Nearly half (44%) of the caregivers had a probable anxiety and/or depressive disorder, with 40% scoring more than the cutoff score for probable anxiety and 20% scoring more than the cutoff score for probable depression. Additionally, approximately 15% of caregivers met the criteria for pre-loss grief, and around 10% reported moderate to severe levels of demoralization. Caregivers who had a probable anxiety and/or depressive disorder also reported higher levels of pre-loss grief.

Conclusion
This study provides further evidence of the prevalence of poor psychosocial well-being in this population. The results reinforce the need to develop suitable strategies for psychological and social support for family caregivers.

Health-related quality of life and children’s happiness with their childcare

Background Almost without exception, research into the range and quality of childcare provision, and its correlates with children’s development, comes from the perspective of adults. Parents, childcare workers, teachers and the general public have all been asked for their views on childcare. In contrast, there is a dearth of information on attitudes to childcare provision and its correlates from the perspective of the children themselves.

Methods A total of 3657 Primary 7 children, who are 10 or 11 years of age, completed the KIDSCREEN-27 health-related quality of life (HRQoL) measure along with questions on their childcare provision as part of an online survey carried out in schools.

Results Most children receiving childcare from people other than their parents were completely happy with their care. Childcare was related to poorer HRQoL for girls on four of the ?ve KIDSCREEN domains, although the effect sizes were small. For both boys and girls, there were statistically signi?cant, although modest, correlations between happiness with childcare and scores on all ?ve domains of the KIDSCREEN-27.

Conclusions Overall, the ?ndings suggest that most children are happy with their care and that any differences between the HRQoL of those who are cared for by their parents and those who are not are small to moderate.

Living through the death of a child: A qualitative study of bereaved parents’ experiences

Design: Cross-sectional qualitative study.

Data sources: Interviews with purposeful sample of 25 recently bereaved parents.

Methods: Semi-structured in-depth interviews.

Results: Four analytically distinct processes were identified in the responses of parents to the death of a child. These are referred to as ‘piloting’, ‘providing’, ‘protecting’ and ‘preserving’. Regardless of individual circumstances, these processes were integral to all parents’ coping, enabling an active ‘doing’ for their child and family throughout the trajectory of their child's illness and into bereavement.

Conclusions: Facilitating the capacity of parents to ‘do’ is central to coping with the stress and uncertainty of living through the death of a child. The provision of informational, instrumental and emotional support by health care professionals in the context of ‘doing’ is core to quality palliative care.

Keywords: Bereaved parents; Cancer; Dying child; End-of-life; Palliative care; Non-malignant

An evaluation of an adapted United States model of pharmaceutical care to improve psychoactive prescribing for nursing home residents in Northern Ireland (Fleetwood NI Study).

OBJECTIVES: To test the effect of an adapted U.S. model of pharmaceutical care on prescribing of inappropriate psychoactive (anxiolytic, hypnotic, and antipsychotic) medications and falls in nursing homes for older people in Northern Ireland (NI).

DESIGN: Cluster randomized controlled trial.

SETTING: Nursing homes randomized to intervention (receipt of the adapted model of care; n=11) or control (usual care continued; n=11).

PARTICIPANTS: Residents aged 65 and older who provided informed consent (N=334; 173 intervention, 161 control).

INTERVENTION: Specially trained pharmacists visited intervention homes monthly for 12 months and reviewed residents' clinical and prescribing information, applied an algorithm that guided them in assessing the appropriateness of psychoactive medication, and worked with prescribers (general practitioners) to improve the prescribing of these drugs. The control homes received usual care.

MEASUREMENTS: The primary end point was the proportion of residents prescribed one or more inappropriate psychoactive medicine according to standardized protocols; falls were evaluated using routinely collected falls data mandated by the regulatory body for nursing homes in NI.

RESULTS: The proportion of residents taking inappropriate psychoactive medications at 12 months in the intervention homes (25/128, 19.5%) was much lower than in the control homes (62/124, 50.0%) (odds ratio=0.26, 95% confidence interval=0.14–0.49) after adjustment for clustering within homes. No differences were observed at 12 months in the falls rate between the intervention and control groups.

CONCLUSION: Marked reductions in inappropriate psychoactive medication prescribing in residents resulted from pharmacist review of targeted medications, but there was no effect on falls.

Quality of life in men receiving radiotherapy and neo-adjuvant androgen deprivation for prostate cancer:Results from a prospective longitudinal study

Aim. To report a study measuring the quality of life and side effects in men receiving radiotherapy and hormone ablation for prostate cancer up to 1year after treatment. Background. Prostate cancer incidence is increasing with the result that more men are living longer with the disease and the side effects of treatment. It is important to know the effects this has on their quality of life. Design. Survey. Method. Between September 2006-September 2007, all men who were about to undergo radical conformal radiotherapy ± neo-adjuvant androgen deprivation for localized prostate cancer were invited to participate in the study; 149 men were recruited. They completed the European Organization on Research and Treatment of Cancer quality of life questionnaire C-30 and Prostate Cancer module PR25 at four time-points. Results. At 4-6weeks after radiotherapy, participants experienced the biggest relative decline in global quality of life, social, physical, and role functioning and an increase in treatment side effects. At 6months postradiotherapy the majority of men experienced an improvement in their side effects. However, a minority of men were experiencing severe side effects of radiotherapy at 1year post-treatment. Single men and men who had a low quality of life prior to radiotherapy, reported a lower quality of life at 1year after treatment in comparison to married men. Conclusion. Men with prostate cancer suffer limitations due to the symptoms they experience and disruption to their quality of life. It is essential that nurses develop and deliver follow-up care which is flexible and appropriate to the individual needs of these men. © 2012 Blackwell Publishing Ltd.

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.

I can't get a breath: experiences of living with advanced chronic obstructive pulmonary disease

This study aims to explore the potential for palliative care among people living with advanced chronic obstructive pulmonary disease (COPD). Individual semi-structured interviews (n=13) were conducted with people who had a diagnosis of advanced COPD and were on optimal tolerated drug therapy, with their breathing volume (forced expiratory volume at less than 30%) or were on long-term oxygen therapy or non-invasion ventilation. Participants raised concerns about the uncertain trajectory of the illness and reported unmet palliative care needs with poor access to palliative care services. For most people, palliative care was associated with end of life; therefore, they were unwilling to discuss the issue. There was a wide acceptance that, medically, nothing more could be done. Findings also suggest that patients had unmet palliative care needs, requiring information and support. The research suggests the need for palliative care to be extended to all (regardless of diagnosis), with packages of care developed to target specific needs.

Exploring public awareness and perceptions of palliative care: a qualitative study

Background: Research suggests that the public appear to be confused about the meaning of palliative care. Given the ageing population and associated increase in the number of patients requiring palliative care, it is vital to explore the public's understanding of this concept. Health-promoting palliative care seeks to translate hospice and palliative care ideals into broader public health practice.

Aim: To explore public perceptions of palliative care and identify strategies to raise awareness.

Design: An exploratory qualitative approach. Participants: Semi-structured telephone interviews were undertaken (N = 50) with members of the public who volunteered to participate in the study. The interviews focused on knowledge and perceptions of palliative care, expectations of palliative care services and the identification of strategies to raise public awareness of palliative care. The interviews were audio recorded and content analysed.

Results: Most participants had a general knowledge of palliative care, largely influenced by their own personal experience. They identified that palliative care was about caring for people who were dying and maintaining comfort in the last days of life. Participants expectations of services included the following: holistic support, symptom management, good communication and practical support to enable choice and carer support. Key aspects identified for promoting palliative care were the development of understanding and use of the term itself and targeted educational strategies.

Conclusion: Experience of palliative care generates understanding in the general public who also have ideas for increasing knowledge and awareness. The findings can inform policymakers about strategies to raise public awareness of palliative care.

Lung stereotactic body radiation therapy (SBRT) delivered over 4 or 11days: A comparison of acute toxicity and quality of life.

Abstract
PURPOSE:
The optimal duration over which lung SBRT should be delivered is unknown. We conducted a randomized pilot study in patients treated with four fractions of lung SBRT delivered over 4 or over 11days.
METHODS:
Patients with a peripheral solitary lung tumor (NSCLC or pulmonary metastasis) ?5cm were eligible. For NSCLC lung tumors ?3cm, a dose of 48Gy in 4 fractions was used, otherwise 52Gy in 4 fractions was delivered. Patients were randomized to receive treatment over 4 consecutive days or over 11days. The primary end-point was acute grade ?2 toxicity. Secondary end-points included quality of life (QOL) assessed using the EORTC QLQ-C30 and QLQ-LC13 questionnaires.
RESULTS:
Fifty four patients were enrolled. More patients in the 11day group had respiratory symptoms at baseline. 55.6% patients treated over 4days and 33.3% of patients treated over 11days experienced acute grade ?2 toxicity (p=0.085). Dyspnea, fatigue and coughing domains were worse in the 11day group at baseline. At 1 and 4months, more patients in the 4day group experienced a clinically meaningful worsening in the dyspnea QOL domain compared to the 11day group (44.5% vs 15.4%, p=0.02; 38.5% vs 12.0%, p=0.03, respectively). However, raw QOL scores were not different at these time-points between treatment groups.
CONCLUSIONS:
Grade 2 or higher acute toxicity was more common in the 4day group, approaching statistical significance. More patients treated on 4 consecutive days reported a clinically meaningful increase in dyspnea, although interpretation of these results is challenging due to baseline imbalance between treatment groups. Larger studies are required to validate these results.

Family-based associations in measures of psychological distress and quality of life in a cardiac screening clinic for inheritable cardiac diseases: a cross-sectional study

BACKGROUND: Family-based cardiac screening programmes for persons at risk for genetic cardiac diseases are now recommended. However, the psychological wellbeing and health related quality of life (QoL) of such screened patients is poorly understood, especially in younger patients. We sought to examine wellbeing and QoL in a representative group of adults aged 16 and over in a dedicated family cardiac screening clinic.

METHODS: Prospective survey of consecutive consenting patients attending a cardiac screening clinic, over a 12 month period. Data were collected using two health measurement tools: the Short Form 12 (version 2) and the Hospital Anxiety and Depression Scale (HADS), along with baseline demographic and screening visit-related data. The HADS and SF-12v.2 outcomes were compared by age group. Associations with a higher HADS score were examined using logistic regression, with multi-level modelling used to account for the family-based structure of the data.

RESULTS: There was a study response rate of 86.6%, with n=334 patients providing valid HADS data (valid response rate 79.5%), and data on n=316 retained for analysis. One-fifth of patients were aged under 25 (n=61). Younger patients were less likely than older to describe significant depression on their HADS scale (p<0.0001), although there were overall no difference between the prevalence of a significant HADS score between the younger and older age groups (18.0% vs 20.0%, p=0.73). Significant positive associates of a higher HADS score were having lower educational attainment, being single or separated, and being closely related to the family proband. Between-family variance in anxiety and depression scores was greater than within-family variance.

CONCLUSIONS: High levels of anxiety were seen amongst patients attending a family-based cardiac screening clinic.Younger patients also had high rates of clinically significant anxiety. Higher levels of anxiety and depression tends to run in families, and this has implications for family screening and intervention programmes.

Self-reported psychosocial needs and health-related quality of life of colorectal cancer survivors

Purpose of the research
To investigate the prevalence and nature of unmet needs among colorectal cancer (CRC) survivors and the relationship between needs and quality of life (QoL).

Methods and sample
Using the Northern Ireland Cancer Registry (NICR) as a sampling frame and working in collaboration with primary care physicians or GPs, the Cancer Survivors Unmet Needs (CaSUN) questionnaire and the Quality of Life in Adult Cancer Survivors Scale (QLACS) were posted to a randomly selected sample of 600 CRC survivors.

Key results
Approximately 69% (413/600) met eligibility criteria for participating in the study; and 30% (124/413) responded to the survey. A comparative analysis of NICR data between respondents and non-respondents did not indicate any systematic bias except that respondents appeared to be younger (65 years vs. 67 years). Approximately 60% of respondents reported having no unmet needs, with 40% reporting one or more unmet health and social care needs such as fear of recurrence, information needs, difficulty obtaining travel insurance and car parking problems. QoL was significantly lower for CRC survivors who reported an unmet need. Highest scores (poorer QoL) were reported for fatigue, welfare benefits and distress recurrence.

Conclusions
Overall, the majority of CRC survivors who had care needs appeared to have needs that were mainly psychosocial in nature and these unmet needs were related to poorer QoL.

General practitioners perceptions on advance care planning for patients living with dementia

BACKGROUND: Advance care planning (ACP) facilitates communication and understanding of preferences, nevertheless the use of ACPs in primary care is low. The uncertain course of dementia and the inability to communicate with the patient living with dementia are significant challenges for GPs to initiate discussions on goals of care.

METHODS: A cross-sectional survey, using a purposive, cluster sample of GPs across Northern Ireland with registered dementia patients was used. GPs at selected practices received the survey instrument and up to four mail contacts was implemented.

RESULTS: One hundred and thirty-three GPs (40.6%) participated in the survey, representing 60.9% of surveyed practices. While most respondents regarded dementia as a terminal disease (96.2%) only 37.6% felt that palliative care applied equally from the time of diagnosis to severe dementia. While most respondents thought that early discussions would facilitate decision-making during advanced dementia (61%), respondents were divided on whether ACP should be initiated at the time of diagnoses. While most respondents felt that GPs should take the initiative to introduce and encourage ACP, most survey participants acknowledged the need for improved knowledge to involve families in caring for patients with dementia at the end of life and that a standard format for ACP documentation was needed.

CONCLUSION: Optimal timing of ACP discussions should be determined by the readiness of the patient and family carer to face to face end of life. ACP discussions can be enhanced by educational strategies directed towards the patient and family carer that enable shared decision-making with their GP when considering options in future care.

Developing and evaluating the integration of Life and Social Sciences teaching to first-year Nursing and Midwifery students

Title: Evaluating the integrating of life and social sciences teaching to first-year nursing and midwifery students

Objectives: To evaluate an integrated teaching and learning approach to first-year nursing students, combining the life, social sciences and public health with a more integrated and clinical focused approach to teaching delivery

Background: Historically within the School of Nursing and Midwifery the life sciences and social sciences had been taught as separate modules with separate teaching teams. This had reflected in a somewhat dis-integrated approach to student learning and understanding without clear clinical focus on application. With focus upon student learning the teaching teams engaged with a stepped, incremental and progressive movement towards developing and delivering a more integrated structure of learning, combining the life sciences, social sciences and public health teaching and learning within the one extended first-year module. The focus was particularly on integrated understanding and clinical relevance. This paper discusses both the approach to developing the integrated model of teaching and the evaluation of that teaching.

Results: The module, combining life, social science and Public health teaching was positively evaluated by the students. Evaluations are compared and contrasted from to nursing student intakes.

Reviewing the Literature on the Breakdown of Foster Care Placements for Young People: Complexity and the Social Work Task

Young people in long-term foster care are at risk of experiencing poor social, emotional, behavioural and educational outcomes. Moreover, these placements have a significantly greater chance of breaking down compared to those involving children. This article critically evaluates the factors associated with this particular outcome. It was carried out through a literature review conducted by a social work practitioner in one Health and Social Care Trust in Northern Ireland. The findings evidenced that, apart from overriding safety concerns, placement breakdown was not a one-off event but rather a complex process involving the interplay between a range of dynamic risk and protective factors over time, operating in the wider context of the young person’s history and life experiences. The significance of these findings for social work practitioners is finally considered by identifying key theories to inform understanding and intervention.