Actions helping expressed or anticipated needs: Patients with advanced cancer and their family caregivers’ experiences of specialist palliative home care teams
Corresponding Author
Anna Klarare
Department of Health Care Sciences, Palliative Research Centre, Ersta Sköndal Bräcke University College, Stockholm, Sweden
Correspondence
Anna Klarare, Department of Health Care Sciences, Palliative Research Centre, Ersta Sköndal Bräcke University College, Stockholm, Sweden.
Email: [email protected]
Search for more papers by this authorBirgit H. Rasmussen
The Institute for Palliative Care, Region Skane, Lund University, Lund, Sweden
Department of Health Care Sciences, Lund University, Lund, Sweden
Search for more papers by this authorBjöörn Fossum
Department of Nursing Science, Sophiahemmet University, Stockholm, Sweden
Department of Clinical Science and Education, Karolinska Institutet, Södersjukhuset, Stockholm, Sweden
Search for more papers by this authorJohan Hansson
Department of Public Health Analysis and Data Management, Public Health Agency of Sweden, Solna, Sweden
Search for more papers by this authorCarl Johan Fürst
Department of Clinical Sciences and Oncology, Faculty of Medicine, The Institute for Palliative Care, Lund University, Lund, Sweden
Search for more papers by this authorCarina Lundh Hagelin
Department of Health Care Sciences, Palliative Research Centre, Ersta Sköndal Bräcke University College, Stockholm, Sweden
Department of Neurobiology, Care Science and Society, KarolinskaInstitutet, Stockholm, Sweden
Search for more papers by this authorCorresponding Author
Anna Klarare
Department of Health Care Sciences, Palliative Research Centre, Ersta Sköndal Bräcke University College, Stockholm, Sweden
Correspondence
Anna Klarare, Department of Health Care Sciences, Palliative Research Centre, Ersta Sköndal Bräcke University College, Stockholm, Sweden.
Email: [email protected]
Search for more papers by this authorBirgit H. Rasmussen
The Institute for Palliative Care, Region Skane, Lund University, Lund, Sweden
Department of Health Care Sciences, Lund University, Lund, Sweden
Search for more papers by this authorBjöörn Fossum
Department of Nursing Science, Sophiahemmet University, Stockholm, Sweden
Department of Clinical Science and Education, Karolinska Institutet, Södersjukhuset, Stockholm, Sweden
Search for more papers by this authorJohan Hansson
Department of Public Health Analysis and Data Management, Public Health Agency of Sweden, Solna, Sweden
Search for more papers by this authorCarl Johan Fürst
Department of Clinical Sciences and Oncology, Faculty of Medicine, The Institute for Palliative Care, Lund University, Lund, Sweden
Search for more papers by this authorCarina Lundh Hagelin
Department of Health Care Sciences, Palliative Research Centre, Ersta Sköndal Bräcke University College, Stockholm, Sweden
Department of Neurobiology, Care Science and Society, KarolinskaInstitutet, Stockholm, Sweden
Search for more papers by this authorAbstract
Patients with advanced cancer and family caregivers in palliative care face physical, psychological, social and existential challenges, much of the time home alone. Specialist palliative home care team services can be instrumental for sense of security in an uncertain situation. The aim of this study was to describe patients’ and family caregivers’ experiences of specialist palliative home care team actions that are identified by the participants as helping or hindering interventions. Six patients and seven family caregivers were interviewed using the enhanced critical incident technique. Ninety-five critical incidents and wish list items were identified. Providing adequate resources, keeping promises and being reliable, and creating partnerships are actions by specialist palliative care teams that patients and family caregivers experienced as helping in meeting expressed or anticipated needs in patients and family caregivers. Being reliable and including patients and family caregivers in partnerships help to continue with daily life, even though death may be close. Unmet needs resulted in experiences of disrespect or violation of personal space/integrity.
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