Inter-Professional Caring for Children Who Are Relatives of Cancer Patients in Palliative Care: Perspectives of Doctors and Social Workers

Karidar, Hakima; Glasdam, Stinne

doi:10.1093/bjsw/bcy080

Cited by 13 publications

(26 citation statements)

References 21 publications

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“…Norway and Sweden have taken a progressive approach by enacting legislation placing a duty on healthcare professionals to actively involve children when a parent is dying. 74 – 76 Children of ill parents are referred to as ‘next-of-kin’ or ‘relatives’ by professionals in these countries, reflecting how they are perceived. 77 – 79 This is a recognition of children’s agency and their fundamental right to be involved in decisions affecting them, as enshrined within the UN Convention on the Rights of the Child.…”

Section: Implications For Practicementioning

confidence: 99%

The perspectives of children and young people affected by parental life-limiting illness: An integrative review and thematic synthesis

et al. 2020

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Background: Although the death of a parent during childhood is relatively commonplace, the voices of children affected by parental life-limiting illness are under-represented in research evidence. Guidance for healthcare professionals is largely based upon professional opinion rather than the experience of children themselves. Aim: To synthesise and appraise the literature from primary research with children about their experience of having a parent with a life-limiting illness. Design: Integrative review and thematic synthesis. Registered on PROSPERO (CRD42019094581). Data sources: PsychINFO, Medline, Embase, Scopus and Web of Science were searched, supplemented by searches of grey literature and systematic reviews. There were no restrictions on publication date, and study quality was appraised using the Hawker checklist. Studies reporting the findings of primary research with participants under 18, whose parent has a life-limiting illness, were eligible for inclusion. Results: Twenty-one papers met the inclusion criteria ( n = 13 qualitative; n = 8 quantitative), reporting on n = 18 studies from high-income countries. Findings reveal that throughout parental life-limiting illness, children strive for agency, but are often shielded and excluded by adults. The experience of living with a dying parent is emotionally demanding for children and involves significant caregiving responsibilities. However these children are not passive, developing strategies to cope with the situation and wanting to be involved. Conclusions: The review has enabled the voices of children affected by parental life-limiting illness to be heard and will inform the development of guidance for parents and professionals.

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Section: Implications For Practicementioning

confidence: 99%

The perspectives of children and young people affected by parental life-limiting illness: An integrative review and thematic synthesis

et al. 2020

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“…A latent content analysis, inspired by Bourdieu's theoretical framework, was made and inspired by other healthcare studies using Bourdieu as a theoretical lens (Engström 2012;Glasdam and Øye 2014;Glasdam and Oute 2018;Karidar and Glasdam 2018;Angus et al 2018). First, all interviews were transcribed verbatim by each interviewer.…”

Section: Analytic Strategymentioning

confidence: 99%

“…Furthermore, studies show that doctors, social workers and nurses in palliative homecare spend most of their working day conducting patient administration. During their working day, they have minimal contact with patients and their relatives (Karidar et al 2016;Karidar and Glasdam 2018). Different meetings and medical rounds, driven by a medical logic where diagnoses and treatments are in focus as the agenda for the inter-professional team, structure the professionals' working days.…”

Section: Introductionmentioning

confidence: 99%

“…Other studies show that hierarchies in the medical field are constructed on doctor-oriented and institution-oriented rather than patient-oriented practices, which means that psychological and social issues in patients and their relatives have low priorities in the teams' work and collaboration (Glasdam 2007;Klitzman 2007). In specialised palliative care, professionals work in interprofessional teams (Klarare et al 2013;Karidar et al 2016;Karidar and Glasdam 2018), based on professional knowledge and skills, professional roles and identities, and power and status among the professionals (Baxter and Brumfitt 2008). The collaboration conforms to the hierarchical structure in the team, and the system of hierarchy makes it difficult for teams to achieve a high level of coordination and cohesiveness on issues unrelated to the doctors' diagnosis and treatment (Baker et al 2006).…”

Section: Introductionmentioning

confidence: 99%

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A gap between the philosophy and the practice of palliative healthcare: sociological perspectives on the practice of nurses in specialised palliative homecare

Glasdam

Ekstrand²,

Rosberg³

et al. 2019

Med Health Care and Philos

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Palliative care philosophy is based on a holistic approach to patients, but research shows that possibilities for living up to this philosophy seem limited by historical and administrative structures. From the nurse perspective, this article aims to explore nursing practice in specialised palliative homecare, and how it is influenced by organisational and cultural structures. Qualitative, semi-structured interviews with nine nurses were conducted, inspired by Bourdieu. The findings showed that nurses consolidate the doxa of medicine, including medical-professional values that configure a control-oriented, positivistic approach, supported by the organising policy for clinical practice. Hierarchically, nurses were positioned under doctors: medical rounds functioned as a structuring structure for their working day. They acted as medical assistants, and the prevailing medical logic seemed to make it difficult for nurses to meet their own humanistic ideals. Only short time slots allowed nurses to prioritise psychosocial needs of patients and relatives. Point-of-actions had high priority, added financial resources and ensured that budgets were allocated. Weekly visits made it possible for nurses to measure, control and govern patients' drugs and symptoms which was a necessity for their function as medical assistants. The findings challenge nurses to take on an ethical point of view, partly to ensure that patients and their families receive good palliative care focusing on more than medical issues and logic, and partly to strengthen the nurses' profession in the palliative field and help them implement palliative care philosophy in practice.

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“…Yet, there is often an apparent gap between how political documents about health advocate that professionals take certain actions directed toward relatives in healthcare settings, and how medical rationality and healthcare professionals’ humanistic values condition how they actually perceive and interact with relatives in daily practice. Thus, professionals’ wishes and intentions to involve and care for relatives seem to be limited by tight conditions in the clinical practice setting (Coyne and Diepernik, 2017; Glasdam et al , 2013b; Karidar et al , 2016; Karidar and Glasdam, 2018).…”

Section: Introductionmentioning

confidence: 99%

Professionals’ involvement of relatives – only good intentions?

Glasdam

Oute

2019

JOE

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Purpose The purpose of this paper is to explore how, and under what conditions, professionals involve relatives in clinical practice. Design/methodology/approach Two cases were constructed from two studies in Denmark, theoretically inspired by Bourdieu’s concepts of doxa and position and analyzed with focus on the involvement of relatives from the perspective of professionals. Findings Support to relatives in practice is rarely included in the way that treatment and care are organized in healthcare. Professionals’ views of the involvement of relatives were characterized by the values of neoliberal ideology and medical-professional rationality, in which relatives are not regarded as a subject of care and support in clinical practice. The involvement of relatives aimed to ensure patients’ participation in randomized clinical trial and to help professionals to care for patients when the professionals were not absolutely needed. Professionals were relatively higher positioned in the clinic than relatives were, which allowed professionals to in – and exclude relatives. Neoliberal ideology and medical-professional rationality go hand in hand when it comes to patient treatment, care and the involvement of relatives; it is all about efficiency, treatment optimization and increased social control of the diagnosed patient. These neoliberal, organizational values consolidate doxa of the medical field and the positions that govern the meeting with patients’ relatives – if it takes place at all. Originality/value The results put into perspective how the combination of neoliberalism and medical logic work as an organizing principle in contemporary healthcare systems, and challenge a normative, humanistic view on involving patients’ relatives in the medical clinic.

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Inter-Professional Caring for Children Who Are Relatives of Cancer Patients in Palliative Care: Perspectives of Doctors and Social Workers

Cited by 13 publications

References 21 publications

The perspectives of children and young people affected by parental life-limiting illness: An integrative review and thematic synthesis

The perspectives of children and young people affected by parental life-limiting illness: An integrative review and thematic synthesis

A gap between the philosophy and the practice of palliative healthcare: sociological perspectives on the practice of nurses in specialised palliative homecare

Professionals’ involvement of relatives – only good intentions?

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