Patient, family member and caregiver engagement in shaping policy for primary health care teams in three Canadian Provinces

Abstract

Introduction: Improving health services integration through primary health care (PHC) teams for patients with chronic conditions is essential to address their complex health needs and facilitate better health outcomes. The objective of this study was to explore if and how patients, family members, and caregivers were engaged or wanted to be engaged in developing, implementing and evaluating health policies related to PHC teams. This patient-oriented research was carried out in three provinces across Canada: British Columbia, Alberta and Ontario.Methods: A total of 29 semi-structured interviews with patients were conducted across the three provinces and data were analysed using thematic analysis.Results: Three key themes were identified: motivation for policy engagement, experiences with policy engagement and barriers to engagement in policy. The majority of participants in the study wanted to be engaged in policy processes and advocate for integrated care through PHC teams. Barriers to patient engagement in policy, such as lack of opportunities for engagement, power imbalances, tokenism, lack of accessibility of engagement opportunities and experiences of racism and discrimination were also identified. Conclusion:This study increases the understanding of patient, family member, and caregiver engagement in policy related to PHC team integration and the barriers that currently exist in this engagement process. This information can be used to guide decision-makers on how to improve the delivery of integrated health services

Keterlibatan Keluarga dalam Pelayanan Kesehatan Primer : Scoping Review

“…Pengalaman positif maupun negatif yang dialami partisipan penelitian dalam pelayanan kesehatan primer memotivasi mereka untuk terlibat aktif, berkomunikasi dengan provider, serta pembuat kebijakan untuk menyuarakan pendapat mereka dalam pelayanan kesehatan primer (Hirschkorn et al, 2022b). Beberapa hambatan yang dirasakan meliputi kemampuan komunikasi, komitmen, pengetahuan dan kesadaran dalam keterlibatan layanan asuhan.…”

“…Suasan kerja yang chaos, angka turnover yang tinggi, menjadi hambatan kurang maksimalnya tenaga kesehatan mengajak peran serta keluarga dan klien. Keluarga kerap kali merasa tidak berdaya dan tidak didengarkan (Hirschkorn et al, 2022b;Pandhi et al, 2020;Sheridan et al, 2015).…”

An end to the “muffin meeting”: Conceptualizing power and navigating tokenism in patient engagement for health leaders

“…6 The increased calls for PE as a catalyst for improvement and change has been characterized as an evolution of ideas of person-centred care, reflecting broader desires to shift from paternalistic models of healthcare 7,8 towards healthcare services that are shaped with patients as equal partners. 9 Further, it has been articulated that PE at service and organizational levels can help to design and deliver care that improves health outcomes, patient safety, and is more efficient. 1,2,6,10 In spite of these imperatives and benefits, and alongside the proliferation of PE efforts in healthcare organizations, awareness that the outcomes of PE sometimes fail to meet these inherent goals, and result in experiences of tokenism for the patients who participate in them, is gaining increased attention.…”