Training and supportive programs for palliative care volunteers in community settings.

BACKGROUND: Palliative care is specialised health care to support people living with a terminal illness and their families. The involvement of volunteers can extend the range of activities offered by palliative care services, particularly for those living in the community. Activities undertaken by palliative care volunteers vary considerably but can be practical, social or emotional in nature. The types of training and support provided to these volunteers are likely to affect the volunteers' effectiveness in their role and influence the quality of care provided to palliative care clients and their families. Training and support can also have considerable resource implications for palliative care organisations, which makes it important to know how to provide this training and support as effectively as possible. OBJECTIVES: To assess the effects of training and support strategies for palliative care volunteers on palliative care clients and their families, volunteers and service quality. SEARCH METHODS: We searched the Cochrane Central Register of Controlled Trials (CENTRAL, The Cochrane Library, 28 April 2014); MEDLINE (1946 to 28 April 2014); EMBASE (1988 to 28 April 2014); PsycINFO (1806 to 28 April 2014); CINAHL (EbscoHOST) (1981 to 28 April 2014); ProQuest Dissertations and Theses (1861 to 28 April 2014). We also searched the Database of Abstracts of Reviews of Effects (DARE, The Cochrane Library); reference lists of relevant studies; and conducted an extensive search for evaluations published in government reports and other grey literature including the CareSearch database (www.caresearch.com.au (September 2004 to February 2012) and websites of relevant organisations, for unpublished and ongoing studies. SELECTION CRITERIA: Randomised controlled trials (RCTs), quasi-randomised controlled trials, controlled before-and-after (CBA) studies and interrupted time series (ITS) studies of all formal training and support programs for palliative care volunteers. Programs or strategies in included studies were classified according to any stated or implied purpose: that is, whether they intended to build skills for the volunteer's role, to enhance their coping, or to maintain service standards. DATA COLLECTION AND ANALYSIS: Two review authors screened 2614 citations identified through the electronic searches after duplicates were removed. The search of grey literature through websites yielded no additional titles. We identified 28 potentially relevant titles but found no studies eligible for inclusion. MAIN RESULTS: We did not find any studies that assessed the effects of training and support strategies for palliative care volunteers that meet our inclusion criteria. The excluded studies suggest that trials in this area are possible. AUTHORS' CONCLUSIONS: The use of palliative care volunteers is likely to continue, but there is an absence of evidence to show how best to train or support them whilst maintaining standards of care for palliative care patients and their families.

Reflections on using biographical approaches in end-of-life care: dignity therapy as example.

The therapeutic potential of nonpharmacologic interventions using biographical approaches at the end of life (EoL) is being increasingly recognized, but less attention is paid to processes impeding realization of this potential. In this article, Swedish and Australian researchers reflect on and problematize experiences using one biographical approach, dignity therapy (DT), in EoL care in Sweden. We use this as an example, focusing on critical examination of the process of applying DT in practice, examining frictions experienced in recruiting participants, collecting the data, and creating a biography. We discuss issues regarding agency, which became evident in the recruitment process and choices made about participation, and the power differentials manifested in the interactive process of eliciting stories and crafting them into a final product. We also raise salient questions about how research and practice with biographical approaches in EoL care might better build on and further existing knowledge to better reflect the complexities of everyday life.

Dying with motor neurone disease, what can we learn from family caregivers?

BACKGROUND: Increasingly, people with neurodegenerative illness are cared for at home until close to death. Yet, discussing the reality of dying remains a social taboo. OBJECTIVE: To examine the ways, family caregivers of people living with motor neurone disease (MND) experienced the dying of their relative and to identify how health practitioners can better prepare families for end-of-life care. DESIGN: Secondary analysis was undertaken on data sets generated from two longitudinal qualitative studies employing similar data collection and analysis methods. Combining data sets increased participant numbers in a low incidence disease group. SETTING AND PARTICIPANTS: Primary studies were undertaken with family caregivers in England and Australia. Interview and observational data were collected mostly in home. Participants who discussed dying and death formed the sample for secondary analysis. RESULTS: Combined data revealed four major themes: planning for end of life, unexpected dying, dignity in the dying body and positive end to MND. Despite short survival predictions, discussions among family members about dying were often sporadic and linked to loss of hope. Effective planning for death assisted caregivers to manage the final degenerative processes of dying. When plans were not effectively communicated or enacted, capacity to preserve personhood was reduced. DISCUSSION AND CONCLUSION: Returning death and dying to social discourse will raise the level of community awareness and normalize conversations about end-of-life care. Strategies for on-going, effective communication that facilitates advance care planning among patients, their families and practitioners are essential to improve dying and death for people with MND and their family caregivers.

Facilitating advance care planning in community palliative care: conversation starters across the client journey.

This paper describes the development of a tool for palliative care nurses to initiate and facilitate advance care planning (ACP) conversations in community palliative care practice. Seven community palliative care services located across Australia participated in a multi-site action research project. Data included participant observation, individual and focus group interviews with palliative care health professionals, and medical record audit. A directed content analysis used a pre-established palliative care practice framework of referral, admission, ongoing management, and terminal/discharge care. From this framework a Conversation Starter Tool for ACP was developed. The Tool was then used in orientation and continuing nurse education programmes. It provided palliative care nurses the opportunity to introduce and progress ACP conversations.

Cognitive Existential Couple Therapy for newly diagnosed prostate cancer patients and their partners: a descriptive pilot study.

OBJECTIVE: This paper aims to describe 'Cognitive Existential Couple Therapy' (CECT), a novel couples-based intervention for men with early stage prostate cancer (PCa) and their partners, and to report preliminary findings from a pilot study that investigated the acceptability and feasibility of the intervention and the measures to be used in a subsequent randomised controlled trial. METHODS: A manualised CECT programme was delivered to 12 couples facing a diagnosis of PCa within the previous 12 months by psychiatrists and clinical psychologists. Participants completed measures of psychological distress, marital function and coping pattern before and after CECT. Semi-structured interviews were conducted with nine couples shortly after the completion of CECT. RESULTS: The application of CECT was both feasible and acceptable as indicated by favourable participant compliance (10 of the 12 couples attended all six designated sessions), completion of measures before and after CECT and participation in semi-structured interviews by nine couples. Preliminary results included reduced levels of avoidance and hyperarousal after the programme, with this effect stronger in partners than in patients. Interviews demonstrated that couples valued the therapist's contribution to their overall care. CONCLUSIONS: Previous research suggests that a couple-focused psychological intervention is desirable in the context of early stage PCa. This pilot study has established that CECT is acceptable, feasible and valued by couples facing a recent PCa diagnosis and demonstrates a potential for reduced psychological distress following CECT. A randomised controlled trial is currently being undertaken to validate the efficacy of this novel approach.

Acceptability and feasibility of end-of-life care pathways in Australian residential aged care facilities.

OBJECTIVES: To investigate the acceptability and feasibility of using end-of-life (EOL) care pathways in residential aged care facilities (RACFs). DESIGN, SETTING AND PARTICIPANTS: Multistage action research approach involving interviews, surveys and prospective audits of deaths and EOL care pathway use among residents and staff of RACFs and associated general practitioners from 14 RACFs in Victoria and South Australia between April 2009 and July 2010. INTERVENTION: Introduction of EOL care pathways. MAIN OUTCOME MEASURES: Evidence of acceptability was determined by the rate of pathway use in RACFs and through feedback from RACF managers, staff and GPs. Evidence of feasibility was determined by reductions in transfers to hospital for symptom management before death, length of time on pathways, and whether care was consistent with best practice at EOL. RESULTS: The use of EOL care pathways across the RACFs fell into low-, moderate- and high-uptake groups (for 10%, 34% and 68% of all deaths at the facility, respectively). Feedback from RACF staff and GPs indicated that acceptability was critical to successful implementation. The use of EOL care pathways demonstrated improvements in care, sometimes over extended periods. There were fewer unnecessary admissions to hospital before death, although not all RACF staff and GPs were aware of the project. CONCLUSION: EOL care pathways are feasible strategies for delivering EOL care consistent with best practice. However, their introduction into Australian RACFs needs to include strategies to facilitate acceptability by RACF staff and GPs.

Dignity and deferral narratives as strategies in facilitated technology-based support groups for people with advanced cancer.

This paper examines the value of facilitated telephone and online support groups for palliative care. Telephone interviews were conducted with twenty people living with advanced cancer who had participated in either a telephone or online support group facilitated by the Cancer Council Victoria, Melbourne, Australia. Two dominant participant narratives emerged: a focus on dying with dignity or an interest in deferring discussion of death and dying to focus on the present. Despite the different approaches, participants found the technology-based support groups to be accessible and safe environments in which to discuss difficult topics in privacy. Technology-based strategies provide opportunities for health professionals to provide social and emotional care to more people by moving beyond individualised care and facilitate peer-to-peer support at the end of life, especially to those with specific needs. Such options are feasible for palliative care services to set up and acceptable to a group of clients, especially for younger clients or those socially or geographically isolated.

The dynamics of socio-connective trust within support networks accessed by informal caregivers.

This article introduces the concept of socio-connective trust, the synapse between the social structures and processes that underpin relationships in supportive care networks. Data from an ethnographic case study of 18 informal caregivers providing in-home care for people with life-limiting illness were analysed drawing on theoretical concepts from the work of Giddens and writings on social capital, as well as the construction of trust in the caregiving literature. While conceptions of trust were found to contribute to understanding supportive care relationships, they did not account for the dynamic nature of the availability and use of support networks. Instead, informal caregivers undertook ongoing reflexive negotiation of relationship boundaries in response to their own conception of the current situation and their perception of trust in their relationships with the various members of the support network. The concept of socio-connective trust describes the movement and flow of the flexible bonds that influence relationships among care networks and determine the type and range of support accessed by informal caregivers. Understanding the complexities of socio-connective trust in caregiving relationships will assist health and social care workers to mobilize relevant resources to support informal caregivers.

The State of the Science: Informing choices across the cancer journey with public health mechanisms and decision processes.

Health decisions involve sharing information and making choices-even if the choice is to leave the decision to others. The way that information is delivered and understood by consumers across their cancer journey in turn influences the health decisions they take. A public health approach to the cancer journey considers the information needs of individuals and the structures and systems that facilitate the provision of credible and timely information. This paper examines emerging research that takes a public health approach to promote information-sharing and health decisions, identifies information-sharing mechanisms used by providers to facilitate shared decisions and evaluates decision support processes designed to improve information-sharing and self-care events. Evidence is presented to guide future research directions.

Ten lessons for developing a health information website.

This paper outlines ten lessons derived from the development of a palliative care website, www.pallcarevic.asn.au. The following program elements contributed to the success of the project: (1) peer and stakeholder participation; (2) response to a significant need; (3) networking skills; (4) administrative skills; (5) mediation of conflicts; (6) project management skills; (7) sourcing of good evidence; (8) iterative evaluation involving users and stakeholders; (9) iterative expert evaluation; and (10) a well thought through sustainability strategy.

Developing a web-based information resource for palliative care: an action-research inspired approach.

BACKGROUND: General Practitioners and community nurses rely on easily accessible, evidence-based online information to guide practice. To date, the methods that underpin the scoping of user-identified online information needs in palliative care have remained under-explored. This paper describes the benefits and challenges of a collaborative approach involving users and experts that informed the first stage of the development of a palliative care website 1. METHOD: The action research-inspired methodology included a panel assessment of an existing palliative care website based in Victoria, Australia; a pre-development survey (n = 197) scoping potential audiences and palliative care information needs; working parties conducting a needs analysis about necessary information content for a redeveloped website targeting health professionals and caregivers/patients; an iterative evaluation process involving users and experts; as well as a final evaluation survey (n = 166). RESULTS: Involving users in the identification of content and links for a palliative care website is time-consuming and requires initial resources, strong networking skills and commitment. However, user participation provided crucial information that led to the widened the scope of the website audience and guided the development and testing of the website. The needs analysis underpinning the project suggests that palliative care peak bodies need to address three distinct audiences (clinicians, allied health professionals as well as patients and their caregivers). CONCLUSION: Web developers should pay close attention to the content, language, and accessibility needs of these groups. Given the substantial cost associated with the maintenance of authoritative health information sites, the paper proposes a more collaborative development in which users can be engaged in the definition of content to ensure relevance and responsiveness, and to eliminate unnecessary detail. Access to volunteer networks forms an integral part of such an approach.

Non-finite loss and emotional labour: family caregivers' experiences of living with motor neurone disease.

AIM AND OBJECTIVES: This paper aims to add to nurses' knowledge concerning the losses and emotional labour family caregivers face caring for people living with neurodegenerative, life-limiting illnesses such as motor neurone disease. BACKGROUND: Motor neurone disease is a relentless, progressive illness resulting in progressive loss of voluntary muscle mass and function. Previous caregiver research presents the salient losses such as social, financial and relationship loss. However, the non-finite, unpredictable losses faced every day by caregivers and the emotional labour experienced are not effectively represented and have not been explored for caregivers of adult patients with life-limiting, degenerative, illness. DESIGN/METHODS: Semi-structured interviews, ecomaps of social support networks and field notes were used to collect data for this ethnographic case study. Data were attained at three time points over a 10-month period from 18 primary caregivers and once from six peripheral caregivers. RESULTS: Data revealed new information about the psychosocial and emotional losses experienced daily, when living with motor neurone disease. The impact of the constancy of voluntary muscle degeneration and the uncertainty of the illness progression in terms of available time and functional loss, threatened people's understanding and expectations of life, their relationships, their personal identity and their future. Managing their relationship with the patient and their reactions to the devastation of motor neurone disease is consistent with the concept of emotional labour. CONCLUSIONS: Family caregivers living with relentless, life-limiting illness experience non-finite losses and emotional labour on a daily basis. While each individual's experience of loss is unique, nurses need to include caregivers as well as patients, in their spectrum of supportive care. RELEVANCE TO CLINICAL PRACTICE: Nurses can be independent confidants who share the emotional labour and work with caregivers to develop interventions to assist them to manage their losses and their changing needs for psychological and emotional support.

Communicating about patient sexuality and intimacy after cancer: mismatched expectations and unmet needs.

OBJECTIVE: To explore the ways that patients and health professionals communicate about intimate and sexual changes in cancer and palliative care settings. DESIGN: A qualitative study using a three-stage reflexive-inquiry approach, with semi-structured, participant interviews (n = 82); textual analysis of national and international cancer and palliative care clinical practice guidelines (n = 33); and participant feedback at 15 educational forums for cancer patients or health professionals. SETTING: A large Australian public teaching hospital between 2002 and 2005. PARTICIPANTS: 50 patients diagnosed with cancer, and 32 health professionals who had worked in cancer and/or palliative care for a minimum of 12 months. MAIN OUTCOME MEASURES: Communication about intimacy and sexuality: patients' needs and experiences and health professionals' attitudes and experiences. RESULTS: There were mismatched expectations between patients and health professionals and unmet patient needs in communication about sexuality and intimacy. Most patients sought information, support and practical strategies about how to live with intimate and sexual changes after treatment for cancer, even if their cancer type did not affect fertility or sexual performance. In contrast, many health professionals assumed that patients shared their professional focus on combating the disease, irrespective of the emotional and physical costs to the patient. Health professionals overwhelmingly limited their understanding of patient sexuality to fertility, contraception, menopausal or erectile status. Many stereotypical assumptions were made about patient sexuality, based on age, sex, diagnosis, culture, and partnership status. There was a relationship between providing patient-centred communication about intimacy and sexuality and health professionals' understanding of their own attitudes and beliefs. CONCLUSION: Resources are needed to help health professionals engage in an exploration of their own definitions of intimacy and sexuality and understand how these affect interactions with patients with cancer.

Constructions of sexuality and intimacy after cancer: patient and health professional perspectives.

With an increasing emphasis on the provision of psychosocial support for patients in cancer and palliative care, an emerging body of literature has highlighted the importance of providing the opportunity for patients to discuss issues of intimacy and sexuality with their health professionals. Very little is known about why health professionals struggle with this level of communication in clinical practice. The aim of this paper is to discuss constructions of intimacy and sexuality in cancer and palliative care from patient and health professional perspectives. A three stage reflexive inquiry was used to systematically and critically analyse data from semi-structured interviews (n=82), a textual analysis of 33 national and international clinical practice guidelines and participant feedback at 15 forums where preliminary research findings were presented to patients and health professionals in cancer and palliative care. The study was conducted across one public teaching hospital in Australia from 2002 to 2005. Data were further analysed drawing upon the work of Giddens on reflexivity, intimacy and sexuality, to reveal that the majority of health professionals embraced a less reflexive, more medicalised approach about patient issues of intimacy and sexuality after cancer. This was in stark contrast to the expectations of patients. Cancer had interrupted their sense of self, including how they experienced changes to intimate and sexual aspects of their lives, irrespective of their age, gender, culture, type of cancer or partnership status. Key findings from this project reveal incongruence between the way patients and health professionals constructed sexuality and intimacy. Structures which govern cancer and palliative care settings perpetrated the disparity and made it difficult for health professionals to regard patients as people with sexual and intimate needs or to express their own vulnerability when communicating about these issues in the clinical practice setting. A degree of reflexivity about personal and professional constructions of sexuality and intimacy was required for health professionals to confidently challenge these dominant forces and engage in the type of communication patients were seeking.

Let's talk about sex: risky business for cancer and palliative care clinicians.

Few health professionals feel confident and comfortable when communicating with patients about the sexual and intimate changes that might occur after a diagnosis of cancer. Little research has focused on why health professionals find this type of patient communication so challenging. Drawing on data from a larger study examining issues of intimacy and sexuality from the perspectives of patients and health professionals in cancer and palliative care, this paper will present the health professional perspective. In the larger study a reflexive inquiry methodology enabled data to be collected through semi-structured participant interviews (n=82), a textual analysis of national and international clinical practice guidelines (n=33) and documented feedback from patients and health professionals attending educational forums where preliminary findings of the study were presented (n=15). In the part of the study reported here, a total of 32 health professionals recognised as members of a multidisciplinary team and working in cancer and or palliative care for a minimum of 12 months were interviewed. Results revealed that patient sexuality and intimacy was largely medicalised so that health professional discussions remained at the level of patient fertility, contraception, erectile or menopausal status. Many unchecked assumptions about patient sexuality were made by health professionals, based on the patient's age, diagnosis, culture, partnership and disease status. It was personally confronting and a 'risky' business to communicate about issues of patient intimacy and sexuality after cancer, particularly when the clinical setting emphasised medicalised, health professional driven and problem-based communication. Implications for practice will be discussed.

Karmic quest: Thai family caregivers promoting a peaceful death for people with AIDS.

This paper reports the constructions of karma by four Thai family caregivers living with a dying person with AIDS in Southern Thailand. These four families form a subset of a larger ethnographic case study exploring the experiences of families living with a relative with AIDS. Serial interviews, observations, and field journal were used as data collection methods with the four families. The findings indicated that the karmic quest is a dominant theme in the narratives of these families caring for their loved ones dying with AIDS. The 'calm and peaceful' death that is described in the palliative care literature equated with their desire for the Buddhist philosophy of a harmonious death. The families used the law of karma and reincarnation as their main frame of reference and mobilised their religious resources to create meaning and purpose. Karmic healing activities were aimed at ending suffering, promoting a peaceful and calm death and ensuring a better life in the next one. The findings are important for the development of palliative nursing practice in Thailand by acknowledging religious and cultural values to promote peaceful death.

Managing shame and stigma: case studies of female carers of people with AIDS in southern Thailand.

The authors of this article discuss the effects of shame and stigma on female caregivers of people living with AIDS in southern Thailand. They conducted a longitudinal ethnographic case study over 8 months and collected data using interviews, observations, field notes, and journaling. The authors performed qualitative content analysis and narrative analysis. Public judgment was created in a moral climate, framed by Buddhist precepts of correct and honorable behavior, with different levels of tolerance and stigmatization between men and women. Women caregivers engaged in concealing practices, deception, and withdrawal from social relationships to manage the effects of shame and stigma.

Caregiver bodywork: family members' experiences of caring for a person with motor neurone disease.

AIM: This paper reports a study of how family members caring for people living with motor neurone disease managed the deteriorating body, their own bodywork and the associated emotional labour. BACKGROUND: People living with the neurodegenerative condition of motor neurone disease face the prospect of dying in 3-5 years from progressive loss of voluntary muscle mass and function, culminating in respiratory failure. Theories concerning the body in illness have been used to illustrate patient perspectives; however, family caregivers' experiences of the body have been neglected. METHOD: An ethnographic case study was undertaken with 18 primary family caregivers and six peripheral caregivers. Primary caregivers participated over 10 months in three face-to-face, semi-structured interviews which included mapping their support networks using ecomaps. Observational data were also recorded as field notes. Peripheral caregivers were interviewed once during the same time period. The data were generated between 2003 and 2004. FINDINGS: Informal caregiving requires engagement in various aspects of bodywork. Three body concepts were identified: the visible body--how the disease affected the patient and caregivers; the dependent body--the resulting care requirements; and the social body--how living with motor neurone disease affected their social support networks. The visible body is a continual reminder of the ravages of the disease, while the dependent body demands physical and emotional care. Social interactions decline over time, depriving family caregivers of the much needed support for sustaining their commitment to the bodywork required in caregiving. CONCLUSION: The demands of bodywork for family caregivers are increased by the continual presence of emotional labour as they seek to implement the best way to support their relative with motor neurone disease. Nurses and allied healthcare workers need to assess each family situation, asking appropriate questions to establish the most appropriate interventions to facilitate supportive care.

Who's there and who cares: age as an indicator of social support networks for caregivers among people living with motor neurone disease.

This paper explores the social support networks available to the informal carers of people living with motor neurone disease (MND). An ethnographic case study was undertaken using eco mapping, observation and conversational interviews to collect data from 18 primary carers of people living with MND. Interviews took place in participants' homes in metropolitan, regional and rural locations. Participants discussed the content of their support network and drew lines between individuals to indicate the type and strength of relationship. Changes to the network were depicted on eco maps during subsequent interviews. While health policy-makers assume that healthy social capital exists in Australian communities and that social cohesion will ensure active and available support networks in times of illness or disability, data from this exploratory study indicated that this was not consistently the case. Support networks varied in size and composition; however, age was identified as a discriminator of the availability and consistency of support. People in older age groups identified more diverse but consistent support systems while people in younger age groups reported more fluctuations in the strength of relationships and declines in support as caregiving became more demanding. Individual assessment of support networks at regular intervals in the caregiving trajectory is vital for all carers. However carers in younger age groups may need specific support to manage the psychological crises that occur and more access to paid care. Older carers may need consistent support to handle more of the instrumental aspects of care and assistance to mobilise their support networks. Community workers should be alert to the possible need for crisis intervention when tensions in relationships threaten carers' ability to provide effective care.