Improving the Care Provided to Informal Caregivers of Palliative Care Patients: A Mixed Method Approach

Objective: Informal caregivers of palliative care patients face many challenges and are in need of support by healthcare providers. We aim to assess the care provided to informal caregivers, the effects of healthcare providers’ background characteristics and actions undertaken to improve the care provided in healthcare organizations. Method: A cross-sectional mixed-method approach was applied. Questionnaires were used for statistical analysis. First, the care provided to informal caregivers (i.e. basic emotional care and specific care tasks) was examined using descriptive statistics. Second, the effects of healthcare providers’ background characteristics (i.e. healthcare setting, profession, age and work experience) on the care provided were examined using bivariable analyses and general linear model (GLM). Third, actions to improve the care provided in healthcare organizations were examined using qualitative conventional content analysis. Journey mapping workshops provided input...Show moreObjective: Informal caregivers of palliative care patients face many challenges and are in need of support by healthcare providers. We aim to assess the care provided to informal caregivers, the effects of healthcare providers’ background characteristics and actions undertaken to improve the care provided in healthcare organizations. Method: A cross-sectional mixed-method approach was applied. Questionnaires were used for statistical analysis. First, the care provided to informal caregivers (i.e. basic emotional care and specific care tasks) was examined using descriptive statistics. Second, the effects of healthcare providers’ background characteristics (i.e. healthcare setting, profession, age and work experience) on the care provided were examined using bivariable analyses and general linear model (GLM). Third, actions to improve the care provided in healthcare organizations were examined using qualitative conventional content analysis. Journey mapping workshops provided input for the 19 analyzed action plan reports. Results: 586 healthcare providers and volunteers of 19 Dutch healthcare organizations completed the questionnaire (response rate: 49%). First, participants had an average basic emotional care of 6.70 (SD = 3.33, 0-10 range) and an average of specific care tasks of 8.51 (SD = 2.89, 0-13 range). Second, volunteers and paramedics scored lower than other healthcare providers on basic emotional care (p = .003, p = .012) and volunteers scored lower on specific care tasks (p = .012). The age of healthcare providers and volunteers seemed to have a quadratic effect on the basic emotional care (p = .017) with an increase until 45-55 years. The same effect was found on specific care tasks (p = 0.042) after excluding the volunteers. Third, improvement categories were derived from the action plan reports. For individual healthcare providers: care and support for informal caregivers during the illness-trajectory, bereavement care for informal caregivers, cooperation with informal caregivers, interprofessional cooperation. For healthcare organizations: organizational support. Discussion: The care provided to informal caregivers is still in need of improvement. The age and profession of healthcare providers were found to affect the care provided. The actions found to improve the care provided to informal caregivers are promising and can be a source of inspiration for healthcare organizations.Show less

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Improving the Care Provided to Informal Caregivers of Palliative Care Patients: A Mixed Method Approach