TY - JOUR
T1 - Patients’ and relatives’ experiences in symptom management in generalist palliative care: a qualitative study
AU - Kochems, K
AU - de Graaf, Everlien
AU - Hesselmann, GM
AU - Teunissen, Saskia C.C.M.
PY - 2020/9/21
Y1 - 2020/9/21
N2 - Context: Structural and multi-dimensional symptom management is essential to optimal palliative care. In the KWASA study, an integrated working method will be developed and implemented to improve multi-professional collaboration in symptom management and to create palliative care that meets the wishes and priorities of patients and relatives. Gaining insight into the experience of patients and relatives is necessary.
Methods: A generic explorative qualitative design is carried out in a purposive sample of patients with an estimated life expectancy of <1 year, receiving care at home or in a nursing home (n=7), and their first contact person (n=5). Data is collected through semi-structured interviews and analyzed using thematic analysis.
Results: Accessibility and availability of health care providers (HCPs), as well as continuity in HCPs, are needed by all participants. Bottlenecks arise if HCPs are not adequately trained or often change. Further, clarity in expectations and guidance through the process is required. Even more, insecurities are created if no conversation about different scenarios is held. Shared decision making is seen as a dialogue where participants need the expertise of HCPs to form their decision. While the needs and symptoms of patients are mapped, being seen as a person is essential. Further, care is considered as physical by participants, and HCPs do not anticipate other needs, which may lead to interventions that do not fit. The relationship with HCPs, as well as individual and social aspects, influence the symptom management process.
Conclusion: Experienced needs and bottlenecks of patients and relatives underline the necessity of an integrated working method supporting multi-professional symptom management. The implementation strategy has to be guided by these findings to prevent bottlenecks.
The study is funded by the Netherlands Organization for Health Research and Development.
AB - Context: Structural and multi-dimensional symptom management is essential to optimal palliative care. In the KWASA study, an integrated working method will be developed and implemented to improve multi-professional collaboration in symptom management and to create palliative care that meets the wishes and priorities of patients and relatives. Gaining insight into the experience of patients and relatives is necessary.
Methods: A generic explorative qualitative design is carried out in a purposive sample of patients with an estimated life expectancy of <1 year, receiving care at home or in a nursing home (n=7), and their first contact person (n=5). Data is collected through semi-structured interviews and analyzed using thematic analysis.
Results: Accessibility and availability of health care providers (HCPs), as well as continuity in HCPs, are needed by all participants. Bottlenecks arise if HCPs are not adequately trained or often change. Further, clarity in expectations and guidance through the process is required. Even more, insecurities are created if no conversation about different scenarios is held. Shared decision making is seen as a dialogue where participants need the expertise of HCPs to form their decision. While the needs and symptoms of patients are mapped, being seen as a person is essential. Further, care is considered as physical by participants, and HCPs do not anticipate other needs, which may lead to interventions that do not fit. The relationship with HCPs, as well as individual and social aspects, influence the symptom management process.
Conclusion: Experienced needs and bottlenecks of patients and relatives underline the necessity of an integrated working method supporting multi-professional symptom management. The implementation strategy has to be guided by these findings to prevent bottlenecks.
The study is funded by the Netherlands Organization for Health Research and Development.
M3 - Meeting Abstract
SN - 0269-2163
VL - 34
JO - Palliative Medicine
JF - Palliative Medicine
IS - Suppl_1
M1 - P01-265
ER -