Narrative Accounts of Volunteers in Palliative Care Settings

Guirguis-Younger, Manal; Grafanaki, Soti

doi:10.1177/1049909107310137

Cited by 33 publications

(51 citation statements)

References 15 publications

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“…Studies tend to explore issues such as the volunteer experience [14–16], the nature of their role [17], their interaction with professional staff [18], the ethics of working as a volunteer [19] and the impact on their own health [20]. Satisfaction with services has tended to be explored from the perspective of volunteers or the services they work with rather than those of the people who receive care [21–23].…”

Section: Introductionmentioning

confidence: 99%

‘Being with’ or ‘doing for’? How the role of an end-of-life volunteer befriender can impact patient wellbeing: interviews from a multiple qualitative case study (ELSA)

Dodd

Hill²,

Ockenden³

et al. 2018

Support Care Cancer

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PurposeTo explore the perspectives of people anticipated to be in their last year of life, family carers, volunteers and staff on the impacts of receiving a volunteer-provided befriending service. Patient participants received up to 12 weeks of a volunteer-provided befriending intervention. Typically, this involved one visit per week from a trained volunteer. Such services complement usual care and are hoped to enhance quality of life.MethodsMultiple case study design (n = 8). Cases were end-of-life befriending services in home and community settings including UK-based hospices (n = 6), an acute hospital (n = 1) and a charity providing support to those with substance abuse issues (n = 1). Data collection incorporated qualitative thematic interviews, observation and documentary analysis. Framework analysis facilitated within and across case pattern matching.ResultsEighty-four people participated across eight sites (cases), including patients (n = 23), carers (n = 3), volunteers (n = 24) and staff (n = 34). Interview data are reported here. Two main forms of input were described—‘being there’ and ‘doing for’. ‘Being there’ encapsulated the importance of companionship and the relational dynamic between volunteer and patient. ‘Doing for’ described the process of meeting social needs such as being able to leave the house with the volunteer. These had impacts on wellbeing with people describing feeling less lonely, isolated, depressed and/or anxious.ConclusionImpacts from volunteer befriending or neighbour services may be achieved through volunteers taking a more practical/goal-based orientation to their role and/or taking a more relational and emotional orientation. Training of volunteers must equip them to be aware of these differing elements of the role and sensitive to when they may create most impact.Trial RegistrationISRCTN12929812

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Section: Introductionmentioning

confidence: 99%

‘Being with’ or ‘doing for’? How the role of an end-of-life volunteer befriender can impact patient wellbeing: interviews from a multiple qualitative case study (ELSA)

Dodd

Hill²,

Ockenden³

et al. 2018

Support Care Cancer

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“…Volunteers are integral to the hospice movement in North America [1-3], India [2], Uganda [3], and in several European countries, including the UK [4-7]. Demand for end-of-life care is increasing worldwide with more people dying annually (predicted rise from 2002 is between 14% and 42% by 2030 [8]).…”

Section: Introductionmentioning

confidence: 99%

Understanding the role of the volunteer in specialist palliative care: a systematic review and thematic synthesis of qualitative studies

et al. 2014

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BackgroundVolunteers make a major contribution to palliative patient care, and qualitative studies have been undertaken to explore their involvement. With the aim of making connections between existing studies to derive enhanced meanings, we undertook a systematic review of these qualitative studies including synthesising the findings. We sought to uncover how the role of volunteers with direct contact with patients in specialist palliative care is understood by volunteers, patients, their families, and staff.MethodsWe searched for relevant literature that explored the role of the volunteer including electronic citation databases and reference lists of included studies, and also undertook handsearches of selected journals to find studies which met inclusion criteria. We quality appraised included studies, and synthesised study findings using a novel synthesis method, thematic synthesis.ResultsWe found 12 relevant studies undertaken in both inpatient and home-care settings, with volunteers, volunteer coordinators, patients and families. Studies explored the role of general volunteers as opposed to those offering any professional skills. Three theme clusters were found: the distinctness of the volunteer role, the characteristics of the role, and the volunteer experience of the role. The first answers the question, is there a separate volunteer role? We found that to some extent the role was distinctive. The volunteer may act as a mediator between the patient and the staff. However, we also found some contradictions. Volunteers may take on temporary surrogate family-type relationship roles. They may also take on some of the characteristics of a paid professional. The second cluster helps to describe the essence of the role. Here, we found that the dominant feature was that the role is social in nature. The third helps to explain aspects of the role from the point of view of volunteers themselves. It highlighted that the role is seen by volunteers as flexible, informal and sometimes peripheral. These characteristics some volunteers find stressful.ConclusionsThis paper demonstrates how qualitative research can be sythnesised systematically, extending methodological techniques to help answer difficult research questions. It provides information that may help managers and service planners to support volunteers appropriately.

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“…People frequently used words and phrases such as "energy" (Bottorff, et al, 1998), "ongoing struggle" (Carmack, 1992), "consistent effort" (Sulik, 2007) and "keeping up" (Guirguis-Younger & Grafanaki, 2008). There was little sense that a stable state of balance could ever be reached.…”

Section: Part B)mentioning

confidence: 99%

Balance, Balancing, and Health

2011

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In this article we explore the concept of balance in the context of health. We became interested in balance during a grounded theory study of lay conceptualizations of cancer risk, in which participants were concerned with having a good life, which relied heavily on balancing processes. This led us to the qualitative literature about balance in the context of health, which was large and in need of synthesis. We identified 170 relevant studies and used Thomas and Harden's technique of "thematic synthesis" to identify key balance-related themes and to develop these into more abstract analytic categories. We found that balance and balancing were salient to people in three health-related contexts: health maintenance, disease or disability management and lay or professional caregiving. In each of these contexts, balance or imbalance could be a state or a process. In addition, those using the word had either an internally-or externally focused orientation to the world around them. Clinicians and public health practitioners might benefit from using these insights in their research and communication.Keywords communication, medical; concept analysis; health and well-being; health promotion; qualitative analysis Qualitative research sheds light on the ways in which people understand and experience health, disease and health care. Qualitative researchers elicit rich accounts of people's beliefs about specific diseases and experiences of particular illnesses and also empirically examine more abstract concepts such as risk (e.g., Hay, Shuk, Cruz, & Ostroff, 2005), health (e.g., Smith-DiJulio, Windsor, & Anderson, 2010), disability (e.g., Lutz & Bowers, 2005), community (e.g., Wong, 2 Sands, & Solomon, 2010), and quality of life (e.g., Hendry & McVittie, 2004). Such concepts are central to communication and have a powerful capacity to organize thought and shape behavior but their meanings cannot be assumed. This makes the systematic and comparative study of concepts is necessary (Quinton, 1988). Qualitative research also allows us to explore lay knowledge and its meanings. As Popay and Williams have argued in relation to public health:If research in the field of public health is to develop more robust and holistic explanations for patterns of health and illness in contemporary society, then it must utilize and build on lay knowledge-the meanings health, illness, disability and risk have for people (Popay & Williams, 1996, p. 760).In this research we explored the meanings of one abstract concept with particular salience in health: balance. We became interested in this concept while conducting a grounded theory study into lay people's conceptualizations of cancer risk. The central question in the study was: how do lay people understand the risk of getting cancer? We found that people thought of cancer risk only when cancer was personally salient. Their focus was not on disease but rather on having a good life, and this relied on balancing processes.In retrospect, this is unsurprising, given that balance is a concept th...

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Narrative Accounts of Volunteers in Palliative Care Settings

Cited by 33 publications

References 15 publications

‘Being with’ or ‘doing for’? How the role of an end-of-life volunteer befriender can impact patient wellbeing: interviews from a multiple qualitative case study (ELSA)

‘Being with’ or ‘doing for’? How the role of an end-of-life volunteer befriender can impact patient wellbeing: interviews from a multiple qualitative case study (ELSA)

Understanding the role of the volunteer in specialist palliative care: a systematic review and thematic synthesis of qualitative studies

Balance, Balancing, and Health

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