Enhancing primary care support for informal carers: A scoping study with professional stakeholders

Abstract

Informal carers (i.e. people who provide unpaid care to family and/or friends) are crucial in supporting people with long-term conditions. Caring negatively impacts on carers' health and experiences of health services. Internationally and nationally, policies, legislation, professional guidance and research advocate for health and care services to do more to support carers. This study explored the views of health and social care providers, commissioners and policy makers about the role and scope for strengthening health service support for carers. Twenty-four semi-structured interviews, with 25 participants were conducted, audio-recorded, transcribed verbatim and analysed by thematic analysis. Three main themes emerged: (a) identifying carers, (b) carer support, and (c) assessing and addressing carer needs. Primary care, and other services, were seen as not doing enough for carers but having an important role in identifying and supporting carers. Two issues with carer identification were described, first people not self-identifying as carers and second most services not being proactive in identifying carers. Participants thought that carer needs should be supported by primary care in collaboration with other health services, social care and the voluntary sector. Concerns were raised about primary care, which is under enormous strain, being asked to take on yet another task. There was a clear message that it was only useful to involve primary care in identifying carers and their needs, if benefit could be achieved through direct benefits such as better provision of support to the carer or indirect benefit such as better recognition of the carer role. This study highlights that more could be done to address carers' needs through primary care in close collaboration with other health and care services. The findings indicate the need for pilots and experiments to develop the evidence base. Given the crucial importance of carers, such studies should be a high priority. K E Y W O R D Scarers, health and care services, primary care, professional stakeholders, qualitative | 643 PETERS ET al.

Factors associated with strain among informal care providers of patients with traumatic brain injury in Malaysia

“…Thus, the role of primary care should be boosted in providing support for informal care providers to achieve progress. [ 25 ] Future research should be directed toward a better understanding of the effect of care providing on health outcomes. Focusing on characteristics of informal care providers only may mislead future policy and practices rendering them ineffective.…”

Family Physician’s and Primary Care Team’s Perspectives on Supporting Family Caregivers in Primary Care Networks

“…Similar to our Canadian primary care participants, practitioners in the United States [US] [ 43 ] and health and social care providers, commissioners, and policy-makers in the United Kingdom [UK] [ 30 ] also thought that primary care was an ideal setting to identify family caregivers and begin the support process. As our Canadian primary healthcare providers reported, family caregiver assessments in the United States also tended to be informal [ 44 ].…”

“…The primary care physicians and team members participating in this research, like others worldwide, recognize that primary care can play a significant role in supporting family caregivers to provide the care their patients need as well as the help patients need to manage chronic conditions [ 30 , 38 , 39 ]. The comprehensiveness, continuity, and coordination available within primary care are particularly attractive in the management of care trajectories that can last for many years [ 38 , 40 ].…”

“…Carduff and colleagues [ 46 ] suggested there is still ambiguity about the role of general practitioners and primary care teams in identifying and supporting carers. The UK primary care system remains patient-focused [ 30 , 46 ]. UK General practitioners are concerned about the lack of time to assess family caregivers’ needs and then being overwhelmed by the demand for caregiver servicers that may not be available [ 30 , 46 ].…”

“…In response, governments have begun to enact health policies to support family caregivers. In the 2014 Care and Children and Families Acts, the United Kingdom mandated general practitioners to identify and assess caregiver’s needs [ 29 , 30 ]. The United States followed in January 2018 with the bipartisan Recognize, Assist, Include, Support, and Engage [RAISE] Act.…”