A Comparison of Support Needs Between Rural and Urban Family Caregivers Providing Palliative Care

The present study examined the support needs for urban and rural family caregivers of a palliative family member using a cross-sectional telephone survey in northeastern Ontario, Canada (n = 140; 70 urban, 70 rural). Support needs identified as most important by both the groups were informational. Rural caregivers reported greater unmet needs in tangible support (P =.01). No differences were observed between the groups for emotional or informational support needs (P =.25 and P =.35, respectively). Rural and urban caregivers perceived care for care recipients as accessible (mean accessibility score 1.9, standard deviation [SD] = 0.09 and 1.7, SD = 0.7, respectively, P =.20); the majority indicated that when needed, services were easily and quickly obtained. Although there are similarities in the formal care experiences, rural caregivers experience greater unmet needs in receiving support for instrumental activities. © The Author(s) 2013.

Boost your word power: Katherine Rogers and Maggie Bennett describe a tool that can help students prepare their life science assignments

Anatomy and physiology refers to the structure and function of the human body. Students studying this module, known as life science or bioscience, develop knowledge of the structure (anatomy) and function (physiology) of the body that can be applied in clinical practice and support other study courses.

“A quiet still voice that just touches”: music’s relevance for adults living with life-threatening cancer diagnoses.

Purpose
Music has historically aided health and loss-adaptation, however, cancer patients’ experience of music for self-care is not well understood. This study examines adult cancer patients’ views about music’s role before and after diagnosis.
Methods
Constructivist approach, with grounded theory informed design using convenience, snowball and theoretical sampling. Patients from Australian metropolitan cancer and hospice settings completed demographic questionnaires and participated in semi-structured interviews. Qualitative inter-rater reliability was applied.
Results
Fifty-two patients reported comparable time spent experiencing music pre-post diagnosis. Music may remain incidental; however, many patients adapt music usage to ameliorate cancer’s aversive effects. Patients often draw from their musical lives and explore unfamiliar music to: remain connected with pre-illness identities; strengthen capacity for enduring treatment, ongoing survival (even when knowing “you’re going to die”), or facing death; reframe upended worlds; and live enriched lives. Patients can ascribe human or physical properties to music when describing its transformative effects. Familiar lyrics maybe reinterpreted, and patients’ intensified emotional reactions to music can reflect their threatened mortality. Sometimes music becomes inaccessible, elusive, and/or intensifies distress and is avoided. Families’, friends’ and professionals’ recognition of patients’ altered musical lives and music-based suggestions can extend patients’ use of music for self-care.
Conclusion
Health professionals can support patients by inquiring about their music behaviours and recognising that altered music usage may signify vulnerability. Although commonly recommended, hospital concerts and music broadcasts need sensitive delivery. Patients’ preferred music should be available in diagnostic, treatment and palliative settings because it can promote endurance and life enrichment.

Psychosocial interventions to improve quality of life and emotional wellbeing in newly diagnosed cancer patients

Title
Psychosocial interventions to improve quality of life and emotional wellbeing for recently diagnosed cancer patients.

Background
Despite clear guidelines recommending the provision of emotional support for cancer patients, we do not know how best to address psychological distress in this group.

Aim
To assess the effects of psychosocial interventions to improve quality of life (QoL) and general psychological distress newly diagnosed cancer patients.

Methods
We searched electronic sources for RCTs of psychosocial interventions or ‘talking therapies’ with individual newly diagnosed cancer patients. Only trials measuring QoL and general psychological distress were included. Meta-analyses examined subgroups by outcome measurement, mode of delivery and discipline of trained helper.

Results
Thirty trials met the criteria. No significant effects were observed for QoL at 6-months (SMD 0.11; 95% CI -0.00 to 0.22) except when using cancer-specific measures (SMD 0.16; 95% CI 0.02 to 0.30). Sub-group analyses revealed that psycho-educational, nurse-delivered interventions improved QoL (SMD 0.23; 95% CI 0.04 to 0.43). General psychological distress as assessed by ‘mood measures’ improved (SMD - 0.81; 95% CI -1.44 to -0.18), but heterogeneity was a factor.

Discussion and conclusion
Psychosocial interventions vary in format and content, raising concerns about heterogeneity, despite appearing to have a beneficial impact on cancer-specific QoL and mood. Future research should concentrate on screening for emotional support needs and identifying common elements within interventions that are of value. Authors should carefully select outcome measures that are appropriately sensitive to change.

Psychosocial interventions to improve quality of life and emotional wellbeing in newly diagnosed cancer patients

Title
Psychosocial interventions to improve quality of life and emotional wellbeing for recently diagnosed cancer patients.

Background
Despite clear guidelines recommending the provision of emotional support for cancer patients, we do not know how best to address psychological distress in this group.

Aim
To assess the effects of psychosocial interventions to improve quality of life (QoL) and general psychological distress newly diagnosed cancer patients.

Methods
We searched electronic sources for RCTs of psychosocial interventions or ‘talking therapies’ with individual newly diagnosed cancer patients. Only trials measuring QoL and general psychological distress were included. Meta-analyses examined subgroups by outcome measurement, mode of delivery and discipline of trained helper.

Results
Thirty trials met the criteria. No significant effects were observed for QoL at 6-months (SMD 0.11; 95% CI -0.00 to 0.22) except when using cancer-specific measures (SMD 0.16; 95% CI 0.02 to 0.30). Sub-group analyses revealed that psycho-educational, nurse-delivered interventions improved QoL (SMD 0.23; 95% CI 0.04 to 0.43). General psychological distress as assessed by ‘mood measures’ improved (SMD - 0.81; 95% CI -1.44 to -0.18), but heterogeneity was a factor.

Discussion and conclusion
Psychosocial interventions vary in format and content, raising concerns about heterogeneity, despite appearing to have a beneficial impact on cancer-specific QoL and mood. Future research should concentrate on screening for emotional support needs and identifying common elements within interventions that are of value. Authors should carefully select outcome measures that are appropriately sensitive to change.

Families and Poverty: Everyday life on a low income

The recent radical cutbacks of the welfare state in the UK have meant that poverty and income management continue to be of great importance for intellectual, public and policy discourse. Written by leading authors in the field, the central interest of this innovative book is the role and significance of family in a context of poverty and low-income. Based on a micro-level study carried out in 2011 and 2012 with 51 families in Northern Ireland, it offers new empirical evidence and a theorisation of the relationship between family life and poverty. Different chapters explore parenting, the management of money, family support and local engagement. By revealing the ordinary and extraordinary practices involved in constructing and managing family and relationships in circumstances of low incomes, the book will appeal to a wide readership, including policy makers.

Combining and integrating life /social sciences and citizen trainers in Nurse Education - a N. Ireland initiative

Before commencement of the academic year 2012/2013 the social sciences, public health and the biomedical sciences were taught to separate modules. This reinforced the idea off separate disciplines certainly for some of the younger students and a failure to appreciate the interconnectedness (whole person) perspective on health; separately modules taught and assessed in separate silos. There was limited understanding by the lecturers of the other areas that they were not teaching to -reflecting perhaps a dis-coordinated approach to health sciences (Mason and Whitehead 2003). As a result of significant discussion and interdisciplinary negotiation the life, social sciences public health/ health education were drawn together in the one module for the academic year 2012/13. The module provides the undergraduate students with an introduction to an understanding of Life Sciences, psychology, sociology and public health and their contribution within the context of nursing and midwifery. Each week’s teaching seeks to reflect against the other module delivered in first year - addressing clinical skills. The teaching is developing innovative e-learning approaches, including the use of a virtual community. The intention is to provide the student with a more integrated understanding and teaching to the individual’s health and to health within a social context (Lin 2001; Iles- Shih 2011). The focus is on health promotion rather than disease management. The module runs in three phases across the student’s first-year and teachers to the field of adult mental health, learning disability, children’s nursing and the midwifery students -progressively building on the student’s clinical experience. The predominant focus of the module remains on health and reflecting aspects of life and social life within N. Ireland. One of the particular areas of interest and an area of particular sensitivity is engaging the students to the context of the Northern Ireland civil unrest (the Troubles); this involves a co-educational initiative with service users, only previously attempted with social work students (Duffy 2012). The service users are represented by WAVE an organisation offering care and support to bereaved, traumatised or injured as a result of the violent civil conflict `the Troubles’. The `Troubles’ had ranged over an extended period and apart from the more evident and visual impact of death and injury, the community is marked by a disproportionate level of civil unrest, the extremes of bereavement, imprisonment, displacement antisocial behaviour and family dysfunction (Coulter et al. 2012). As co-educators with the School of Nursing and Midwifery, WAVE deliver a core lecture (augmented by online material), then followed by tutorials. The tutorials are substantially led by those who had been involved with and experienced loss and trauma as a result of the conflict (Health Service users) as `citizen trainers’ and provide an opportunity for them to share their experience and their recollection of personal interaction with nursing and midwifery students; in improving their understanding of the impact of `The Troubles’ on patients and clients affected by the events (Coulter et al. 2012) and to help better provide a quality of care cognisant of the particular needs of those affected by `the Troubles’ in N.Ireland. This approach is relatively unique to nursing in N. Ireland in that it involves many of those directly involved with and injured by the `Troubles’ as `citizen trainers’ and clearly reflects the School’s policy of progressively engaging with users and carers of nursing and midwifery services as co-educators to students (Repper & Breeze 2006). Only now could perhaps such a sensitive level of training to student nurses and midwives be delivered across communities with potential educative lessons for other communities experiencing significant civil unrest and sectarian conflict.

“If I Were Nick”: Men’s Responses to an Interactive Video Drama Series to Support Smoking Cessation

Background: Men continue to smoke in greater numbers than women; however, few interventions have been developed and tested to support men’s cessation. Men also tend to rely on quitting strategies associated with stereotypical manliness, such as willpower, stoicism and independence, but may lack the self‐efficacy skills required to sustain a quit. In this article we describe the development of and reception to an interactive video drama (IVD) series, composed of 7 brief scenarios, to support and strengthen men’s smoking cessation efforts. The value of IVD in health promotion is predicated on the evidence that viewers engage with the material when they are presented characters with whom they can personally identify. The video dramatizes the challenges unfolding in the life of the main character, Nick, on the first day of his quit and models the skills necessary to embark upon a sustainable quit. 
Objective: The objective was to describe men’s responses to the If I were Nick IVD series as part of a pilot study of QuitNow MenTM, an innovative smoking cessation website designed for men. Specific objectives were to explore the resonance of the main character of the IVD series with end‐users, and men’s perceptions of the effectiveness of the IVD series for supporting their quit self‐management. 
Methods: Seven brief IVD scenarios were developed, filmed with a professional actor and uploaded to a new online smoking cessation website, QuitNow MenTM.  A sample of 117 men who smoked were recruited into the study and provided baseline data prior to access to the QuitNow MenTM website for a 6 month period. During this time, 47 men chose to view the IVDs. Their responses to questions about the IVDs were collected in 3‐month and 6‐month online follow‐up surveys and analyzed using descriptive statistics. 
Findings: The majority of participants indicated they related to the main character, Nick. Participants who “strongly agreed” they could relate to Nick perceived significantly higher levels of support from the IVDs than the “neutral” and “disagree” groups (P <.001, d =2.0, P <.001 d =3.1). The “agree” and “neutral” groups were significantly higher on rated support from the videos than the “disagree” (P <.001 d =2.2, P =.01 d = 1.5). Participants’ perception of the main character was independent of participant age, education attainment or previous quit attempts. 
Conclusions: The findings suggest that IVD interventions may be an important addition to men’s smoking cessation programs. Given that the use of IVD scenarios in health promotion is in its infancy, the positive outcomes from this pilot study signal the potential for IVD and warrant ongoing evaluation in smoking cessation and, more generally, men’s health promotion.  

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.

Homeless young people, families and change.:Family support as a facilitator to exiting homelessness.

The families of homeless young people are most often portrayed as a precipitating factor in their homelessness. However, recent studies, particularly those taking a longitudinal approach, have drawn attention to the enabling role of family members and their positive influence on the housing trajectories of homeless youth. Drawing on selected findings from an ongoing longitudinal qualitative study of homeless young people in Dublin, Ireland, this paper aims to build on this relatively fertile area of research. We demonstrate the supportive role of the families of young people who experience homelessness (often as a consequence of difficult family environments) and specifically examine how family re-engagement is negotiated and achieved. The findings highlight a number of dimensions of transition and change. Prominent among these is the importance of renewed trust and communication. Young people and their parents also had to accept responsibility for areas of life that previously served to undermine their relationships and were implicated in the circumstances surrounding a young person's premature home-leaving. Tensions and resistances on the part of young people are highlighted, demonstrating the adaptive mechanisms at work as they attempt to re-engage with family members. The implications of the findings for social work intervention with homeless youth are discussed.

People with intellectual disabilities: promoting quality end of life care

Background: Internationally concerns have been highlighted about the quality of palliative care that people with intellectual disability receive. It has also been evidenced that people with intellectual disabilities are seldom referred to hospice and palliative care services. 

Aims: This study aimed to explore the experience of health and social care professionals in providing palliative care to people with intellectual disabilities. 

Methods An exploratory, qualitative design was used. A purposive sample of thirty health and social care professionals, working in intellectual disability and palliative care services, who had provided end-of-life care to adults with intellectual disabilities, were recruited to the study following informed consent. They were asked to reflect on a case scenario of a person with intellectual disability to whom they had provided end of life care. A semi-structured interview technique, with open questions and prompts, was used to explore their experiences and insights. The narrative from the case scenarios were content analysed using a recognised framework. 

Results: Three themes emerged from the data within the case scenarios: Identifying end of life care needs, meeting support needs and empowerment in partnership. Examples of good practice and issues in practice were apparent. 

Conclusion/ Discussion: This study contributes to the developing international evidence base to enhance end of life care for people with intellectual disabilities and provides further insights into this area of practice. Funder: HSC Research and Development Doctoral Fellowship Scheme

Music therapy for end-of-life care: an updated systematic review

Background: Music therapy during palliative and end-of-life care is well established and positive benefits for patients have been reported.
Aim: Assess the effectiveness of music therapy versus standard care alone or standard care in combination with other therapies for improving psychological, physiological and social outcomes among adult patients in any palliative care setting.
Data sources: In order to update an existing Cochrane systematic review, we searched MEDLINE, CINAHL, EMBASE, PsycINFO, CENTRAL, ClinicalTrials.gov register, and Current Controlled Trials register to identify randomised or quasi-randomised controlled trails published between 2009 and April 2015. Nine electronic music therapy journals were searched from 2009 until April 2015, along with reference lists and contact was made with key experts in music therapy. Only studies published in English were eligible for inclusion. Two reviewers independently screened titles, abstracts, assessed relevant studies for eligibility, extracted data and judged risk of bias for included studies. Disagreements were resolved through discussion with a third reviewer. Data were synthesised in Revman using the random effects model. Heterogeneity was assessed using l2.
Results: Three studies were included in the review. Findings suggest music therapy may be effective for helping to reduce pain in palliative care patients (standard mean deviation (SMD) = -0.42, 95% CI -0.68 to -0.17, P = 0.001).
Conclusions: Available evidence did not support the use of music therapy to improve overall quality-of-life in palliative care. While this review suggests music therapy may be effective for reducing pain, this is based on studies with a high risk of bias. Further high quality research is required.

Healthcare Staff Experience of Providing End-of-Life Care to Children: A Mixed Method Review

Background: Staff who provide end-of-life care to children not only have to deal with their own sense of loss, but also that of bereaved families. There is a dearth of knowledge on how they cope with these challenges.
Aim: The aim of this review is to explore the experiences of health care professionals who provide end-of-life care to children in order to inform the development of interventions to support them, thereby improving the quality of paediatric care for both children and their families.
Data sources: Searches included CINAHL, MEDLINE, Web of Science, EMBASE, PsychINFO, and The Cochrane Library in June 2015, with no date restrictions. Additional literature was uncovered from searching reference lists of relevant studies, along with contacting experts in the field of paediatric palliative care.
Design: This was a systematic mixed studies review. Study selection, appraisal and data extraction were conducted by two independent researchers. Integrative thematic analysis was used to synthesise the data.
Results: The 16 qualitative, six quantitative, and eight mixed-method studies identified included healthcare professionals in a range of settings. Key themes identified rewards and challenges of providing end-of-life care to children, the impact on staff’s personal and professional lives, coping strategies, and key approaches to help support staff in their role.
Conclusions: Education focusing on the unique challenges of providing end-of-life care to children and the importance of self-care, along with timely multidisciplinary debriefing are key strategies for improving healthcare staffs’ experiences, and as such the quality of care they provide.

A monster that lives in our lives - experiences of caregivers of people with motor neuron disease and identifying avenues for support.

Background A developing body of evidence has provided valuable insight into the experiences of caregivers of people with motor neuron disease; however, understandings of how best to support caregivers remain limited.

Aim This study sought to understand concepts related to the motor neuron disease caregiver experience which could inform the development of supportive interventions.

Design A qualitative thematic analysis of a one-off semistructured interview with caregivers was undertaken.

Setting/participants Caregivers of people with motor neuron disease were recruited from a progressive neurological diseases clinic in Melbourne, Australia.

Results 15 caregivers participated. Three key themes were identified: (1) The Thief: the experience of loss and grief across varied facets of life; (2) The Labyrinth: finding ways to address ever changing challenges as the disease progressed; (3) Defying fate: being resilient and hopeful as caregivers tried to make the most of the time remaining.

Conclusions Caregivers are in need of more guidance and support to cope with experiences of loss and to adapt to changeable care giving duties associated with disease progression. Therapeutic interventions which target these experiences of loss and change are worth investigation.

Palliative Medicine:Scoping the level and extent of service provision to people with intellectual disability at end of life Poster Presentation

Background: Concerns exist about the end of life care
that people with intellectual disabilities receive. This population
are seldom referred to palliative care services and
inadequate data sets exist about their place of death.
Aim: To scope the extent of service provision to people
with intellectual disabilities at the end of life by specialist
palliative care and intellectual disability services in one
region of the United Kingdom.
Methods: As part of a larger doctoral study a regional survey
took place of a total sample (n=66) of specialist palliative
care and intellectual disability services using a postal
questionnaire containing forty items. The questionnaire
was informed by the literature and consultation with an
expert reference group. Data were analysed using SPSS to
obtain descriptive statistics.
Results: A total response rate from services of 71.2%
(n=47) was generated. Findings showed a range of experience
among services in providing end of life care to people
with intellectual disabilities in the previous five years, but
general hospitals were reported the most common place of
death. A lack of accessible information on end of life care
for people with learning disabilities was apparent. A few
services (n=14) had a policy to support this population to
make decisions about their care or had used adapted Breaking
Bad News guidelines (n=5) to meet their additional
needs. Both services recognised the value of partnership
working in assessing and meeting the holistic needs of
people with intellectual disabilities at end of life.
Conclusions: A range of experience in caring for people
with intellectual disabilities was present across services,
but more emphasis is required on adapting communication
for this population to facilitate them to participate in their
care. These findings could have international significance
given that studies in other countries have highlighted a
need to widen access to palliative care for this group of
people.