Advance Care Planning as Key to Person-Centered Care: A co-design study involving adults with chronic kidney disease, family members and healthcare professionals

Introduction Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care . Advance care planning is recommended for adults with chronic kidney disease and is an approach to facilitating person-centered care. The approach is useful at all stages of the disease and not solely related to end of life or serious disease events but also concerns management of physical, emotional, and psychological challenges throughout the illness trajectory. Living with chronic kidney disease is burdensome, and there is a need for family members to be involved in the process to support their loved ones. Therefore, this study aims to describe a co-design, pilot test and evaluation of an ACP intervention for adults with CKD supported by their family members. Furthermore, the paper explores and critically discusses how this approach aligns with principles around person-centered care. Methods The project was inspired by the framework of complex interventions and divided into three phases which consisted of four sub-studies; a cross-sectional survey, an interview study, workshops for intervention development and, a qualitative evaluation of the intervention. Qualitative studies was conducted with a phenomenological-hermeneutic approach inspired by Ricoeur´s interpretation theory. Quantitative data were analyzed using both descriptive and inferential statistics managed in STATA. For intervention development, co-design was applied and data were analyzed using the action research spiral. Results Living with chronic kidney disease impacted family and everyday life, and led to changes in family identity and roles, for both adults with chronic kidney disease and family members. There was a desire for family members be involved in the advance care planning process to be able to support their loved ones. Healthcare professionals experienced barriers to engaging in care planning, and they had a desire for a systematic and disease-specific approach. This knowledge was used to design an advance care planning intervention in close collaboration with the consumers with a focus on person-centered care and family. The advance care planning intervention supported an open dialogue about thoughts and concerns and created a shared understanding and unique knowledge. Conclusion The study provided valuable insights into the importance of supporting adults with chronic kidney disease in understanding and sharing their preferences and wishes for care and daily life and for involving family members in the ACP process to support their loved ones. Thus, an ACP intervention with a person-centered and family-focused approach was developed to improve care on an individual and family level throughout the illness trajectory. The ACP discussions were significant for adults with CKD, family members and healthcare professionals and informed approaches to care and treatment.