Negotiating the Boundary Between Paid and Unpaid Hospice Workers

Field-Richards, Sarah Elizabeth; Arthur, Antony

doi:10.1177/1049909111435695

Cited by 11 publications

(15 citation statements)

References 23 publications

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“…In three studies respondents had experience of care based in a dedicated hospice building [29,31,36], in six respondents had experience of home-care [31,33-35,37], and in three respondents had experienced a mix of care settings [1,30,32]. In seven studies respondents were volunteers [1,29-33,36] (168 participants with ages ranging from 18 to 74), in two they were patients and/or family members of patients who had received volunteer care [5,37] (38 participants, age range 23-87), and in three respondents came from a mixed population from different care settings or were volunteer coordinators [3,34,35] (130 participants, age range 28-65+).…”

Section: Resultsmentioning

confidence: 99%

“…All but three studies [1,32,33] were published since 2004. Seven studies were from North America [1,29,30,32-34,37], four from Europe [5,31,35,36] and one Africa [3]. See Additional file 2 for further details.…”

Section: Resultsmentioning

confidence: 99%

“…The first of these included acting as a ‘go-between’ between patients/family and paid staff [31,35], or acting as an advocate for the patient and family [33,35]. One volunteer reported how volunteers "…might notice something that hasn’t been picked up by the nurses or something, indeed they might not have said to the nurses, something that they perhaps feel unable to talk about.…”

Section: Resultsmentioning

confidence: 99%

“…One volunteer reported how volunteers "…might notice something that hasn’t been picked up by the nurses or something, indeed they might not have said to the nurses, something that they perhaps feel unable to talk about. So you know, we are able to pass stuff on if necessary" [31], p.629.…”

Section: Resultsmentioning

confidence: 99%

“…When volunteer roles were talked of in terms of surrogacy, volunteers were seen as becoming, albeit temporarily, an additional or substitute family member or friend [31,33,34,37]. One study reported that participants talked of how " … volunteers will step in …to forge a bond of real friendship so that when the client dies they are ‘like family’" [34], p.166.…”

Section: Resultsmentioning

confidence: 99%

See 4 more Smart Citations

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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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 3 more Smart Citations

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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‘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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Understanding the Outcomes of Supplementary Support Services in Palliative Care for Older People. A Scoping Review and Mapping Exercise

Dodd

Payne

Preston

et al. 2020

Journal of Pain and Symptom Management

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Context. Supplementary support services in palliative care for older people are increasingly common, but with neither recommended tools to measure outcomes nor reviews synthesizing anticipated outcomes. Common clinically focused tools may be less appropriate. Objectives. To identify stakeholder perceptions of key outcomes from supplementary palliative care support services, then map these onto outcome measurement tools to assess relevance and item redundancy. Methods. A scoping review using the design by Arksey and O'Malley. EMBASE, CINAHL, MEDLINE, and PSYCHinfo searched using terms relating to palliative care, qualitative research, and supplementary support interventions. Articles were imported into EndnoteÔ, and CovidenceÔ was used by two reviewers to assess against inclusion criteria. Included articles were imported into NVivoÔ and thematically coded to identify key concepts underpinning outcomes. Each item within contender outcome measurement tools was assessed against each concept. Results. Sixty included articles focused on advance care planning, guided conversations, and volunteer befriending services. Four concepts were identified: enriching relationships; greater autonomy and perceived control; knowing more; and improved mental health. Mapping concepts to contender tool items revealed issues of relevance and redundancy. Some tools had no redundant items but mapped only to two of four outcome themes; others mapped to all concepts, but with many redundant questions. Tools such as ICECAP-Supportive Care Measure and McGill Quality of Life had high relevance and low redundancy. Conclusion. Pertinent outcome concepts for these services and population are not well represented in commonly used outcome measurement tools, and this may have implications in appropriately measuring outcomes. This review and mapping method may have utility in fields where selecting appropriate outcome tools can be challenging. J Pain Symptom Manage 2020;60:449e459.

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Negotiating the Boundary Between Paid and Unpaid Hospice Workers

Cited by 11 publications

References 23 publications

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

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

‘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 Outcomes of Supplementary Support Services in Palliative Care for Older People. A Scoping Review and Mapping Exercise

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