Abstract
Background/aims: Hospice patients are at risk of losing dignity due to illness
progression. Palliative care services and guidelines state the importance of
dignity. A practical description of dignity conserving care is lacking.
Aim: To explore the caregiver perspective on dignity preserving care in
the last year of life.
Methods: Hospice caregivers were invited for online focusgroup interviews (Jul 2020-Sep 2021). Maximum variation was sought in experience, (in)formal profession/background. Participants per group were
limited to 5 to optimize online interaction. The initial question: “What is
dignity for you?” a mutual understanding of dignity between participants was build. Practices of dignity conserving care was explored using
a negative example to open the conversation. A 6-step inductive thematic analysis was performed.
Results: 19 caregivers aged 36-79, 14 women, participated in 4 focus groups:
2 patient representatives, 6 informal caregivers, 1 nursing aid, 8 nurses, 1 GP,
and 1 chaplain, all trained in hospice care, 7 had specialized education.
Three themes describing dignity and how to conserve dignity.
1 Respect for personal values and priorities. Exploring what the
personal values and priorities are and supporting to preserve
these even if it means accepting that personal values differ
from caregiver perspectives. To provide care in accordance.
2 Autonomy and actorship. Supporting the patients’ ability to
decide for himself, providing information needed and not
deciding to withhold questions but accepting ‘no’ as an
answer.
3 Participation, belonging and being of value. The sense of
belonging and being of value can be supported in the ability to
participate in what matters for this specific patient.
Competences supporting dignity conserving care are reflection and
communication.
Conclusions: Dignity conserving care is difficult due to the tendency to
be implicit. The use of tools could support caregivers to actively attune
to patients.
progression. Palliative care services and guidelines state the importance of
dignity. A practical description of dignity conserving care is lacking.
Aim: To explore the caregiver perspective on dignity preserving care in
the last year of life.
Methods: Hospice caregivers were invited for online focusgroup interviews (Jul 2020-Sep 2021). Maximum variation was sought in experience, (in)formal profession/background. Participants per group were
limited to 5 to optimize online interaction. The initial question: “What is
dignity for you?” a mutual understanding of dignity between participants was build. Practices of dignity conserving care was explored using
a negative example to open the conversation. A 6-step inductive thematic analysis was performed.
Results: 19 caregivers aged 36-79, 14 women, participated in 4 focus groups:
2 patient representatives, 6 informal caregivers, 1 nursing aid, 8 nurses, 1 GP,
and 1 chaplain, all trained in hospice care, 7 had specialized education.
Three themes describing dignity and how to conserve dignity.
1 Respect for personal values and priorities. Exploring what the
personal values and priorities are and supporting to preserve
these even if it means accepting that personal values differ
from caregiver perspectives. To provide care in accordance.
2 Autonomy and actorship. Supporting the patients’ ability to
decide for himself, providing information needed and not
deciding to withhold questions but accepting ‘no’ as an
answer.
3 Participation, belonging and being of value. The sense of
belonging and being of value can be supported in the ability to
participate in what matters for this specific patient.
Competences supporting dignity conserving care are reflection and
communication.
Conclusions: Dignity conserving care is difficult due to the tendency to
be implicit. The use of tools could support caregivers to actively attune
to patients.
| Original language | English |
|---|---|
| Pages (from-to) | 171 |
| Number of pages | 1 |
| Journal | Palliative Medicine |
| Volume | 37 |
| Issue number | S1 |
| DOIs | |
| Publication status | Published - 7 Jun 2023 |
| Event | European Association of Palliative Care World Congress: Equity and diversity - De Doelen, Rotterdam, Netherlands Duration: 15 Jun 2023 → 17 Jun 2023 https://eapccongress.eu/2023/ |