Background: A great number of palliative patients are care at home for a long time. Palliative patients and informal caregivers are essential to ensure the continuity of this care and to enhance the sustainability of health and social services. Aim: To identify the motivations that lead informal caregivers and palliative patients to provide care at home; To understand the nature of their experiences, the reasons that lead them to maintain care at home and their expectations. Methodology: A Grounded Theory study about informal caregiving process at home. A purposive sample of 9 palliative patients and 9 informal caregivers was recruited in the central region of Portugal. Data were collected between June and October 2022, at participants’ homes, using semi-structured interviews (12) and non-participant observation. Constant comparative analysis and coding—open, axial and selective—was used to analyze data. Results: participants described multiple reasons, interrelated to each other. Five themes emerged as main motivations—Guarantee of safety, comfort and autonomy; Self-preservation; Affective bonding; Caring as a moral duty and Caring as a social duty. Conclusions: Motivations to care play a determining role in the way participants construct care, in the dynamics they establish between each other and in the effort they make to maintain care at home. These motivations are not static, evolve over time according to circumstances and lived experiences. Understanding motivations to care allows healthcare teams to prevent conflict between their care plans and families’ expectations.

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Motivations of Informal Caregivers and Palliative Patients to Care at Home: Grounded Theory

  • Sandra Batista,
  • Paula Sapeta,
  • Célia Oliveira,
  • Isabel Ferraz Pereira

摘要

Background: A great number of palliative patients are care at home for a long time. Palliative patients and informal caregivers are essential to ensure the continuity of this care and to enhance the sustainability of health and social services. Aim: To identify the motivations that lead informal caregivers and palliative patients to provide care at home; To understand the nature of their experiences, the reasons that lead them to maintain care at home and their expectations. Methodology: A Grounded Theory study about informal caregiving process at home. A purposive sample of 9 palliative patients and 9 informal caregivers was recruited in the central region of Portugal. Data were collected between June and October 2022, at participants’ homes, using semi-structured interviews (12) and non-participant observation. Constant comparative analysis and coding—open, axial and selective—was used to analyze data. Results: participants described multiple reasons, interrelated to each other. Five themes emerged as main motivations—Guarantee of safety, comfort and autonomy; Self-preservation; Affective bonding; Caring as a moral duty and Caring as a social duty. Conclusions: Motivations to care play a determining role in the way participants construct care, in the dynamics they establish between each other and in the effort they make to maintain care at home. These motivations are not static, evolve over time according to circumstances and lived experiences. Understanding motivations to care allows healthcare teams to prevent conflict between their care plans and families’ expectations.