A Canadian qualitative study exploring the diversity of the experience of family caregivers of older adults with multiple chronic conditions using a social location perspective

Abstract

BackgroundA little-studied issue in the provision of care at home by informal caregivers is the increase in older adult patients with chronic illness, and more specifically, multiple chronic conditions (MCC). We know little about the caregiving experience for this population, particularly as it is affected by social location, which refers to either a group’s or individual’s place/location in society at a given time, based on their intersecting demographics (age, gender, education, race, immigration status, geography, etc.). We have yet to fully comprehend the combined influence of these intersecting axes on caregivers’ health and wellbeing, and attempt to do this by using an intersectionality approach in answering the following research question: How does social location influence the experience of family caregivers of older adults with MCC?MethodsThe data presented herein is a thematic analysis of a qualitative sub-set of a large two-province study conducted using a repeated-measures embedded mixed method design. A survey sub-set of 20 survey participants per province (n = 40 total) were invited to participate in a semi-structured interview. In the first stage of data analysis, Charmaz’s (2006) Constructivist Grounded Theory Method (CGTM) was used to develop initial codes, focused codes, categories and descriptive themes. In the second and the third stages of analysis, intersectionality was used to develop final analytical themes.ResultsThe following four themes describe the overall study findings: (1) Caregiving Trajectory, where three caregiving phases were identified; (2) Work, Family, and Caregiving, where the impact of caregiving was discussed on other areas of caregivers’ lives; (3) Personal and Structural Determinants of Caregiving, where caregiving sustainability and coping were deliberated, and; (4) Finding Meaning/Self in Caregiving, where meaning-making was highlighted.ConclusionsThe intersectionality approach presented a number of axes of diversity as comparatively more important than others; these included gender, age, education, employment status, ethnicity, and degree of social connectedness. This can inform caregiver policy and programs to sustain health and well-being.

A pharmacy carer support service: obtaining new insight into carers in the community

“…Some difficulties were experienced in terms of carer recruitment. Reasons included insufficient time, differences in cultural norms between Caucasian and Asian populations, and an assumption that support was unnecessary if carers had been in their roles for an extensive period of time, that is were seen as having confidence in their roles and responsibilities . Importantly, some people may not recognise themselves as a carer perhaps as a protective measure towards the care‐receiver, for example to maintain a semblance of independence .…”

“…Reasons included insufficient time, differences in cultural norms between Caucasian and Asian populations, and an assumption that support was unnecessary if carers had been in their roles for an extensive period of time, that is were seen as having confidence in their roles and responsibilities. [31] Importantly, some people may not recognise themselves as a carer perhaps as a protective measure towards the care-receiver, for example to maintain a semblance of independence. [32] The concern with using carer terminology in service promotion material was referred to by one participant (Table 4); promotional material avoiding such terms would be required to target the attention of hidden carers who do not identify as a carer.…”

An evaluation study of caregiver perceptions of the Ontario’s Health Links program

“…These regions represent various geographic, rural and urban, socio-economic, and ethno-cultural communities which can take into account the influence of intersectionality. [16] The partner university team identified patient participants from three different regional health authorities, which included six HLs programs: 1) the South East LHIN (including HL programs in Quinte, Thousand Islands, and Rural Hastings); 2) the Central LHIN (including HL programs in South Simcoe and Northern York Region, and North York Central); and 3) the Hamilton Niagara Haldimand Brant LHIN (including the HL in Niagara North East).…”

“…A sampling matrix was used to obtain a diverse sample of caregivers from the participating HL sites and a mix of male and female caregivers who were � 65 and � 65 years of age. All caregivers who were invited to participate agreed to be interviewed for the qualitative component (n = 16). No interviews were repeated to obtain clarifications.…”

Support for Australian carers from community pharmacy: Insight into carer perspectives of a novel service

“…Carers may face other medication-related issues, such as ensuring medication adherence, particularly when caring for people with late-stage dementia (Alsaeed, Jamieson, Gul, & Smith, 2016). Canadian researchers identified that risk of medication interactions was of particular concern for carers ( Williams et al, 2016). Studies in the United States (Look & Stone, 2017;Noureldin, Murawski, Mason, Hyner, & Plake, 2017) and United Kingdom (Maidment, Aston, Moutela, Fox, & Hilton, 2017;Smith, Francis, Gray, Denham, & Graffy, 2003) have emphasised the important role of community pharmacy staff assisting carers, especially concerning medication management.…”