Introduction: Health systems are striving to design and deliver care that is ‘person centred’—aligned with the needs and preferences of those receiving it; however, it is unclear what older people and their caregivers value in their care. This paper captures attributes of care that are important to older people and their caregivers. Methods: This qualitative descriptive study entailed 1–1 interviews with older adults with multimorbidity receiving community based primary health care in Canada and New Zealand and caregivers. Data were analyzed to identify core attributes of care, important to participants. Findings: Feeling heard, appreciated and comfortable; having someone to count on; easily accessing health and social care; knowing how to manage health and what to expect; feeling safe; and being independent were valued. Each attribute had several characteristics including: being treated like a friend; having contact information of a responsive provider; being accompanied to medical and social activities; being given clear treatment options including what to expect; having homes adapted to support limitations and having the opportunity to participate in meaningful hobbies. Conclusions: Attributes of good care extend beyond disease management. While our findings include activities that characterize these attributes, further research on implementation barriers and facilitators is required.

BackgroundThere is growing reliance on unpaid caregivers to provide support to people with care needs. Integrated care approaches that aim to coordinate primary care with community care known as community based primary health care (CBPHC) has been a key policy initiative across health systems; however most attention has been paid to the needs of patients and not caregivers. The objective of this paper was to explore the unmet needs of caregivers of older adults with complex care needs receiving CBPHC.MethodsThis qualitative descriptive study entailed one-to-one interviews with 80 caregivers from Canada and New Zealand where roles, experiences and needs were explored. Interview text related to unmet need was reviewed inductively and core themes identified.ResultsThree themes were identified across CBPHC sites: unrecognized role; lack of personal resources; and no breaks even when services are in place.ConclusionsTo support caregivers, models of care such as CBPHC need to look beyond the patient to meaningfully engage caregivers, address their needs and recognize the insight they hold. This knowledge needs to be valued as a key source of evidence to inform developments in health and social care.Electronic supplementary materialThe online version of this article (10.1186/s12877-018-0962-5) contains supplementary material, which is available to authorized users.

Introduction:Patient self-management support is central to care for long term conditions and for integrated care. Patients and their carers are the final arbiter of whether support for self-management has been effective. A new taxonomy lists 14 categories of provider activities that support patient self-management (Practical Reviews in Self-Management Support, PRISMS). We asked whether we could recognise these provider activities in narratives from patients and carers. We sought to extend the theoretical framework of the taxonomy to include the view from patient and carers.Methods:We interviewed 28 patients and family carers in a case study of primary health care in New Zealand in 2015 to determine which components of the taxonomy were visible. We drew on interviews with clinicians and organisation persons to explain case study context.Results:We found, within patient and carer data, evidence of all 14 components of provider self-management support. The overarching dimensions of the taxonomy helped reveal an intensity and consistency of provider behaviour that was not apparent considering the individual components.Conclusions:Patient and carer data mapped to provider activities. The taxonomy was not explicit on provider relationships and engagement with, or separate support needs of, patients and carers.

Background:Family carers, as a “shadow workforce”, are foundational to the day-to-day integration of health service delivery for older family members living with complex health needs. This paper utilises Haggerty’s model of continuity of care to explore the contribution of family carers’ to the provision of care and support for an older family member’s chronic condition within the context of health service delivery.Methods:We analysed data from interviews of 13 family carers in a case study of primary health care in New Zealand – a Maori Provider Organisation – to determine the alignment of family caregiving with the three levels of continuity of care (relational continuity, informational continuity, and management continuity).Results:We found alignment of family caregiving tasks, responsibilities, and relationships with the three levels of continuity of care. Family carers 1) partnered with providers to extend chronic care to the home; 2) transferred and contributed information from one provider/service to another; 3) supported consistent and flexible management of care.Discussion:The Maori Provider Organisation supported family carer-provider partnership enabled by shared Maori cultural values and social mandate of building family-centred wellbeing. Relational continuity was the most important level of continuity of care; it sets precedence for family carers and providers to establish the other levels – informational and management – continuity of care for their family member cared for. Family carers need to be considered as active partners working alongside responsive primary health care providers and organisation in the implementation of chronic care.

Introduction: Community Based Primary Health Care (CBPHC) is positioned as the foundation of integrated health systems, intended to support broader goals of population health and health system sustainability. CBPHC moves beyond traditional primary care (a physician visit) to team based care that spans organizational boundaries (such as primary care clinics + community care services). At the core of CBPHC are patients and their informal carers (family and friends) who can inform ongoing reforms in this sector by sharing their experience, particularly in areas that require improvement. The objective of this paper is to share the unmet needs of patients and caregivers within CBPHC. Methods: This study is part of a broader programme of research called, implementing integrated care for older adults with complex health needs (iCOACH). Semi-structured interviews are being conducted with older patients with complex care needs and with unpaid, informal carers across multiple CBPHC sites in Canada (Ontario and Quebec) and New Zealand. Interviews captured the roles, characteristics and needs of patients and carers, and were audio-recorded and transcribed verbatim. Interviews were reviewed by multiple team members and a consensus codebook was created. The code "unmet need" was extracted from the patient and carer transcripts, and analyzed for core themes using an inductive approach. Results: Unmet needs culminated into three broad themes across patient and carer interviews: Accessing Care; Quality of Care; and Missing Care. Many patients accessed care within CBPHC, but the model itself tended to be spread across multiple settings and providers. Patients and carers also required access to services that were outside the CBPHC model. Challenges arose due to lack of transportation, out-of-pocket expenses, limited availability of assistive devices to support mobility, and long wait times. Quality of care and relationships were compromised if there was a language barrier, and when services were misaligned with the preferences of patients and carers. Components of care were often missing, such as respite care for carers, supports for instrumental activities of daily living (e.g., home maintenance and transportation), and supports to reduce social isolation. Conclusions: Due to the complex health and social needs of patients and carers, they often require access to multiple services and providers who are seldom situated under the same roof. Finding ways to integrate across organizational boundaries may reduce areas of unmet need. Furthermore