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How Persons Living with Complex Health and Social Care Needs and Their Caregivers Perceived Integrated Patient Care


Reham Abdelhalim ,

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Kerry Kuluski,

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Agnes Grudniewicz,

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Walter Wodchis

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Persons living with complex health and social care needs (PLCN) and their caregivers frequently report poor care experiences. In previous research, PLCN and caregivers described their care as fragmented and not aligned with their needs and goals. In 2011, Singer et al proposed the concept of integrated patient care as one that has the potential of improving the experience of care for PLCN via person-centred care coordination. They proposed a framework to assess patient experience with integrated patient care. A knowledge gap exists on how integrated patient care materializes in practice from the perspective of PLCN and their caregivers.

Aims Objectives Theory or Methods

In order to understand how PLCN who were enrolled in an integrated patient care initiative in Ontario, Canada perceived integrated patient care, we conducted a qualitative study utilizing interviews. Qualitative directed content analysis was used to explore the experiences of participants. Singer et al.’s framework was the theory guiding the directed content analysis. The seven dimensions of the framework were used to code and analyze the interviews helping the team to see what worked well and what needed to improve based on the views of PLCN and their caregivers. Member checking was conducted with three participants to validate our findings.

Highlights or Results or Key Findings

We interviewed 16 participants (six PLCN and ten caregivers). The findings showed that PLCN and their caregivers perceived that the responsibility of care coordination was still largely shouldered by them despite being part of an initiative that aimed to coordinate their care in a person-centered manner. This was mainly because most of the components of the initiative such as care plans and interprofessional collaboration that were supposed to help in care coordination had gaps. Participants wanted to be regarded as co-coordinators and to be provided the needed support to carry such role.  Relational aspects of care coordination were shown to be the most valuable to persons living with complex needs and their caregivers. Having a care planning session was more valued than having a care plan. Having a relationship with the care coordinator that was based on  partnership was the most valued aspect of having a care coordinator.


Integrated patient care initiatives operate within a healthcare system that is still fragmented and siloed. As a result, the absence of interprofessional and interorganizational coordination reduced the overall impact of such initiatives and raised the importance of relational coordination as a potential solution to facilitate delivering integrated patient care.

Implications for applicability/transferability sustainability and limitations

Future interventions that aim at providing integrated patient care might benefit from investing into: a) supporting PLCN and their caregivers continue carrying on their care coordination role and b) focusing more on relational aspects of care coordination until our healthcare system is more ready to enact interprofessional and interorganizational coordination.

How to Cite: Abdelhalim R, Kuluski K, Grudniewicz A, Wodchis W. How Persons Living with Complex Health and Social Care Needs and Their Caregivers Perceived Integrated Patient Care. International Journal of Integrated Care. 2022;22(S2):194. DOI:
Published on 16 May 2022.


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