Understanding the barriers to identifying carers of people with advanced illness in primary care: triangulating three data sources

Abstract

BackgroundApproximately 10% of the UK population have an unpaid caring role for a family member or friend. Many of these carers make a significant contribution to supporting patients at the end of life. Carers can experience poor physical and psychosocial wellbeing, yet they remain largely unsupported by health and social care services. Despite initiatives for general practices to identify carers and their needs, many remain unidentified. Neither are carers self-identifying and requesting support. This study set out to explore the barriers to, and consider strategies for, identifying carers in primary care.MethodsWe integrated findings from three data sources – a review of the caregiving literature; a workshop with researchers who have undertaken research with those caring at the end of life, and focus groups with carers and health professionals.ResultsThree categories of barrier emerged. 1) Taking on the care of another person is often a gradual process, carers did not immediately identify with being a ‘carer’ – preferring to think of themselves in relational terms to the patient e.g. spouse, sibling, son or daughter. Often it was health and social care professionals who encouraged carers to consider themselves as an unpaid carer. 2) As the cared-for person’s condition deteriorated, the caring role often became all-encompassing so that carers were managing competing demands, and felt unable to look after their own needs as well as those of the cared-for person. 3) There was ambiguity about the legitimacy of carer needs and about the role of the primary health care team in supporting carers, from both the perspective of the carers and the health professionals. GPs were thought to be reactive rather than proactive which discouraged carers from asking for help.ConclusionsThe needs of carers have to be legitimised to ensure primary care staff are proactive in their approach and carers are empowered to utilise the support available. Strategies to identify carers have to be sensitive to the complex dynamics of a caring relationship as well as the primary care context. Identification is a key factor in improving support for carers themselves and to enable them to support the patient.

The Lifelines Cohort Study: a data source available for studying informal caregivers’ experiences and the outcomes of informal caregiving

“…However, it may also be more difficult for people to identify themselves in a broad description, and with a more restricted definition, this recognition may be easier. In addition, research has shown that informal caregivers may prefer to think of themselves as relatives or friends of the person with care needs, not as an informal caregiver [21]. As a result, they may not always identify with the term 'informal caregiver' or 'carer' [21].…”

“…In addition, research has shown that informal caregivers may prefer to think of themselves as relatives or friends of the person with care needs, not as an informal caregiver [21]. As a result, they may not always identify with the term 'informal caregiver' or 'carer' [21]. This consideration is important for future caregiving studies, in which researchers should think carefully about the definition of informal care that they use [20], and researchers may want to consider avoiding the terms 'informal caregiver' or 'carer' when recruiting informal caregivers.…”

Capturing the carer’s experience: a researcher’s reflections

“…Consequently, as a research population, carers present a range of challenges that need to be addressed to facilitate their participation in research. Carduff et al (2014) proposes that carers may not identify themselves as carers, rather that they view the support they provide a being integral to their position as spouse, son/daughter. Additionally they may be reluctant to participate in research as they prioritise the needs of the person they are caring for and may feeling guilty about talking about their needs and feelings.…”

“…It became evident that the low response rate was associated with the distribution of the questionnaires by the HFNS rather than non-return of the questionnaires. commonly do not identify themselves as a carer but think of themselves as a relative or friend who is supporting a person with a debilitating condition (Barnes et al, 2005, Carduff et al, 2014.…”

Dificuldades De Cuidadores De Pacientes Em Cuidados Paliativos Na Estratégia Da Saúde Da Família

“…17 This qualitative study was conducted with caregivers of individuals with advanced diseases and shows they require physical, practical, and psychosocial support to persevere through the demands of homecare. 18 This study shows that the the caregivers expressed many difficulties, which were linked to lack of support, human, material and financial resources, unpreparedness to deal with death in the context of terminality and social isolation. This study corroborates the findings of other studies addressing this topic.…”