Views and experiences of palliative care clinicians in addressing genetics with individuals and families: a qualitative study

White, Stephanie; Phillips, Jane; Turbitt, Erin; Jacobs, Chris

doi:10.1007/s00520-021-06569-z

Cited by 6 publications

(13 citation statements)

References 37 publications

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“…Akin to previous literature, our participants advocated for genetics to be introduced earlier in the patient’s disease course, rather than at end-of-life [ 44 ]. However, palliative care health professionals appear to be subject to well-known barriers to integration of genetics, such as low knowledge and confidence [ 15 , 16 , 45 , 46 ]. Our participants echoed a general willingness to assist with improving palliative care health professionals’ genetics knowledge, but this was contingent upon time and resource constraints [ 47 ].…”

Section: Discussionmentioning

confidence: 99%

“…We used an interpretive descriptive qualitative study design with online focus groups and semi-structured interviews [ 18 ]. These findings are a sub-set of data from a broader qualitative study that additionally recruited palliative care nurses and doctors (reported elsewhere) [ 15 ]. The study protocol was pre-registered: https://osf.io/h4gt9/ .…”

Section: Methodsmentioning

confidence: 99%

“…However, mainstreaming into palliative care appears to have received less attention, despite patients’ interest to discuss genetic testing to address existing concerns about their family members’ future disease risk [ 13 , 14 ]. Some palliative care health professionals report having the capability to discuss genetics with their patients, others have varied opinions on the relevance of genetics to palliative care and concerns about causing harm, but most desire further education and support to improve their confidence [ 15 , 16 ]. Understanding the views of genetic health professionals about delegating responsibility and providing support to palliative care health professionals will build evidence for an intervention designed to support the integration of genetics into the palliative care setting [ 17 ].…”

Section: Introductionmentioning

confidence: 99%

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Approaching discussions about genetics with palliative patients and their families: a qualitative exploration with genetic health professionals

et al. 2022

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Genetic information can provide clinical benefits to families of palliative patients. However, integration of genetics into mainstream medicine has not focused on palliative populations. We explored the views and experiences of genetic health professionals in addressing genetics with palliative patients, and their families. We conducted an interpretive descriptive qualitative study with genetic counsellors and clinical geneticists using interviews and focus groups. Findings were generated using reflexive thematic analysis. Three themes were identified: (1) Focusing on the benefit to the family, (2) The discomfort of addressing genetics near end-of-life and (3) “It’s always on the back-burner”: Challenges to getting genetics on the palliative care agenda. Participants discussed the familial benefit of genetics in palliative care alongside the challenges when patients are near end-of-life. They perceived genetics as low priority for palliative care due to misunderstandings related to the value of genetic information. Acknowledging the challenges in the palliative care context, genetic health professionals want improved service leadership and awareness of the familial benefits of palliative genetic testing. Strong leadership to support genetic health professionals in addressing these barriers is needed for the benefits of genetic information to be realised.

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Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Approaching discussions about genetics with palliative patients and their families: a qualitative exploration with genetic health professionals

et al. 2022

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“…As we initially interact with parents of very unwell children, we see a style of receiving and responding to both certainty and uncertainty. We ourselves as clinicians have different styles of dealing with certainties and uncertainties 18 …”

Section: The Important Medical Role Of Titrating Certainty and Uncert...mentioning

confidence: 99%

“…We ourselves as clinicians have different styles of dealing with certainties and uncertainties. 18 When dealing with an emotionally overwhelming complexity complicated by threatening uncertainties and potentially more threatening certainties, clinicians utilise general problem-solving skills developed from many different fields to make the load of information, emotional impact and requested response more manageable. 19 The titration of information in giving what is needed, what can be borne, in the right way, at the right time, is one of the most important daily tasks of any clinician.…”

Section: When Certainty Is No Longer a Reliefmentioning

confidence: 99%

Hope in the uncertainties and certainty for parents of children with rare neurological disorders: Part 2 (of 3): Certainty

Nevin

Beavis

Macintosh

et al. 2022

J Paediatrics Child Health

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This is the second of a three‐part series that explores different aspects of uncertainty, certainty and hope in the context of providing clinical care for children with rare and life‐limiting neurological disorders. When caring for families impacted by an overwhelming complex disorder in a child, complicated by threatening uncertainties and potentially more threatening certainties, clinicians utilise skills drawn from differing fields to make the load of information, and the emotional impact more manageable. The first article in this series addressed how clinicians might manage the ‘accumulation of uncertainties’ and to provide compassionate care not only to their patients, and their families, but also to themselves. This second paper delves into the less helpful aspects of ‘certainty’, including the associated losses and griefs endured by parents responding to threatening fears associated with their child's condition. In the extreme, disconnection and psychological isolation borne by parents can lead to a sense of hopelessness and desperation. Facing unwelcome certainties – clinicians and parents together – forms the basis of future trust and hope. Clinicians who share the field of trust with families and show commitment to helping parents, even when cure remains elusive, build a sense of hope. This is the sort of hopefulness that clinicians need to have and to offer as they share the journey with families. In this series, we seek to harness a shared approach to face unwelcome certainties and to kindle a sense of hope that is both credible and meaningful to the parents, family and clinician.

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Challenges and Future Directions of Palliative Care Globally

Phillips,

Elvidge,

Currow

2024

Textbook of Palliative Care

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Views and experiences of palliative care clinicians in addressing genetics with individuals and families: a qualitative study

Cited by 6 publications

References 37 publications

Approaching discussions about genetics with palliative patients and their families: a qualitative exploration with genetic health professionals

Approaching discussions about genetics with palliative patients and their families: a qualitative exploration with genetic health professionals

Hope in the uncertainties and certainty for parents of children with rare neurological disorders: Part 2 (of 3): Certainty

Challenges and Future Directions of Palliative Care Globally

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