Living with Long Term Conditions from the Perspective of Family Caregivers. A Scoping Review and Narrative Synthesis

Abstract

(1) Background: When living with one or more long term conditions (LTCs), both the patient and the family experience the impact of the condition at different levels. The family’s needs and perceptions should be considered in the process of caring for people with LTCs. The aim of this review is to understand “the process of living with LTCs” from a family perspective. (2) Methods: A scoping review and narrative synthesis were conducted using a systematic methodology in MEDLINE, CINAHL, Web of Science and PsycINFO, in English and Spanish, including evidence from 2018. (3) Results: A total of 28 articles were included in the review. Acceptance, coping, self-management, integration, and adjustment were key attributes in the process of living with LTCs from the perspective of family caregivers that interrelated in a dynamic way through different mechanisms: being aware of the changing situation, personal networks, information and education, personal conditions, attitude to life and communication. (4) Conclusions: The five attributes that comprise living with LTCs from the perspective of the family caregiver are closely connected of to those of patients living with LTCs; however, self-management and integration have a different meaning and application.

Perceived mental health and emotional trajectories of long-term family caregivers of persons with mental conditions: A mixed-methods study

“…Our findings support other studies that identified that the caregivers' emotional trajectories were not static and did not follow a linear pattern (Marín-Maicas et al, 2021;Shiraishi & Reilly, 2019). A previous conceptual model on living with long-term conditions from the patient's (Ambrosio et al, 2015) and the family caregiver's perspective (Ambrosio et al, 2021;Marín-Maicas et al, 2021) described the experience of longterm conditions as a complex, cyclical and dynamic process that includes five attributes: acceptance; coping; self-management; integration and adjustment. In addition, several mechanisms such as changes in the patients' situation or personal circumstances, the existing social network and the perceived support or information could modify the process.…”

“…In addition, several mechanisms such as changes in the patients' situation or personal circumstances, the existing social network and the perceived support or information could modify the process. The present study found that this emotional trajectory could change with the course of the illness, and the specific situation of the person with the mental illness may have a clear impact on it (Ambrosio et al, 2015;Marín-Maicas et al, 2021). Moreover, as in previous studies of caregivers of advanced cancer patients (Leow & Chan, 2017), the support received from other family members and friends and health professionals are critical for caregivers.…”

“…Current evidence suggests that there is a need for comprehensive policies that address the family caregivers of people with different long term conditions, such as mental health disorders. Interventions should include families to improve the process of living with a long-term condition from the family perspective, aiming at well-being and mental health promotion (Årestedt et al, 2018;Kokorelias et al, 2019;Sarris et al, 2020;Ambrosio et al, 2021;Marín-Maicas et al, 2021).…”

Factors related to family’s ability to care for schizophrenic patients

“…Furthermore, activating existing resources and creating new resources [16], [34] make the family grow and actively use the resources they have to care for sick family members. This is supported by research [35], [36] that there is a relationship between primary health services and the family role in chronic diseases that require long-term care.…”

Methodological Proposal for the Adaptation of the Living with Long-Term Conditions Scale to the Family Caregiver

“…Therefore, living with LTCs is not only important for the person affected, but the family caregiver as well. The meaning of living with an LTC, and the dimensions that compose it, are mostly similar between the people with LTC and the family caregivers [ 7 ]. However, two of its dimensions, self-management and integration, have different meanings and applications [ 7 ].…”