Informal Caregiving in a Medically Underserved Community: Challenges, Construction of Meaning, and the Caregiver–Recipient Dyad

Abstract

Little is known about informal caregivers' challenges in medically underserved communities. This qualitative study explores their perceptions/experiences of caregiving in a medically underserved community in Midwest United States. Two focus groups (n ¼ 12) were conducted and themes were extracted and analyzed. Theme 1 included perceived barriers/unmet needs; most prevalent of which were lack of informational resources and support groups. A second unsolicited and unanticipated theme highlighted how caregivers constructed meaning through reappraising challenges to create enriching experiences for themselves, reinforcing their evolving dyadic relationship with care-recipient. Challenging and enriching aspects of caregiving coexisted and were rooted in caregiver-care-recipient dyad. Caregivers used meaning-making as a coping strategy for challenges. Prior research corroborates caregivers' challenges and meaning-making; this study contributes by delineating how both become interrelated. Policy makers can (a) alleviate challenges by increasing informational resources and support groups and (b) provide training to optimize caregivers' meaning-making, thus enhancing their positive experiences.

Meaning-reconstruction factors and well-being in cancer survivor–caregiver dyads: Daily associations and mechanisms.

“…The findings of this study support earlier reports of interindividual variability in meaning making and meanings made (Gibbons et al, 2019; Gorawara-Bhat et al, 2019; Kernan & Lepore, 2009; Lee, 2008; Moye et al, 2020; van der Spek et al, 2013). The between-person variance in meaning factors was higher than the within-person variance in our study, suggesting a substantial between-person difference in meaning, especially meanings made.…”

“…The available research—mostly qualitative—has demonstrated variability in meaning making and meanings made in cancer survivors and their caregivers (Gibbons et al, 2019; Gorawara-Bhat et al, 2019; Lee, 2008; van der Spek et al, 2013). A study of oral-digestive cancer survivors, 1-year postdiagnosis, found that approximately half of the study participants engaged in the process of meaning making, or claimed that the disease changed their view on life or its meaning (Moye et al, 2020).…”

Exploring the health‐related decision‐making experiences of people with chronic kidney disease and their caregivers: A qualitative study

“…This is important because caregivers are intimately involved in healthcare decision-making, and understanding this influence is vital to enhancing decision-making support and selfmanagement. 14,51,52 This reflection of decision-making supports a relationally-centred and not patient-centred approach, especially when dealing with advanced CKD decisions. 56 Limitations include single-site recruitment, limiting the representation of views where nephrology services may differ.…”

“…[12][13][14][15][16] Examples of involvement include engagement with decisions about renal replacement treatment choice, disease management, when to seek emergency care, how to pay for care, obtaining additional help and end-of-life care. 14,15,17,18 As decision support partners, caregivers help patients make decisions by seeking information, communicating, assisting patients to weigh risks and benefits and understand their options, eliciting patients' values, planning for future decisions and implementing decisions. 9,[19][20][21][22][23] To signify the impact of a caregiver's influence, we highlight that studies have demonstrated that family and friends' approval or disapproval influence engagement with preventative cancer screenings and organ donor registration for patients, which signifies the potential weight these individuals have on health-related decision-making.…”

“…In addition to supporting the direct medical needs of the seriously ill, caregivers are known to be present when their loved one is hospitalized, which can be a frequent occurrence in stage 5 disease, assisting with health‐related decision‐making; yet, despite their reporting active engagement in the decision‐making process, a quarter describe only being involved by healthcare providers some of the time 12–16 . Examples of involvement include engagement with decisions about renal replacement treatment choice, disease management, when to seek emergency care, how to pay for care, obtaining additional help and end‐of‐life care 14,15,17,18 . As decision support partners, caregivers help patients make decisions by seeking information, communicating, assisting patients to weigh risks and benefits and understand their options, eliciting patients' values, planning for future decisions and implementing decisions 9,19–23 .…”