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Project

IMPROVING THE PSYCHOSOCIAL WELL-BEING OF INFORMAL CAREGIVERS IN AN AGEING POPULATION.

Introduction

An aging population in combination with current shifts in health care led to increased reliance on, and need for, informal caregiving, which is becoming more complex. It is therefore not surprising that the percentage of informal caregivers experiencing burden is increasing. Caregiver burden can be seen as a central concept in the psychosocial well-being of informal caregivers. It emphasizes an individual perspective with interpersonal differences depending on the characteristics of the caregiver and patients but also on the context of caregiving. Caregiving for an older patient implies important individual and contextual consequences, not only influencing the psychosocial well-being of the informal caregiver but also affecting the well-being of the patient and their broader context with consequences for the, in particular, Belgian health care. Due to socio-demographic changes and current shifts in health care, more informal caregivers are taking care of a patient in cooperation with other informal caregivers. Furthermore, there is a significant group of vulnerable older patients without informal caregivers or caring network. Tailor-made support for informal caregivers is essential to improve and maintain their psychosocial well-being, and to keep health care costs feasible. This thesis aimed to improve the psychosocial well-being of informal caregivers of older patients by the development of tailor-made support, based on an investigation of the psychosocial well-being and needs of these informal caregivers. We focused on the individual caregiver as well as on the informal care group and the informal care network.

Methods

First, to investigate the psychosocial problems, needs and concerns among individual informal caregivers of older patients, we compared informal caregivers of three groups of patients: older patients with cancer (≥70 years), middle-aged patients with cancer (50-69 years) and older patients without cancer (≥70 years). To determine whether a severe diagnosis like cancer and/or the patient’s age plays a decisive role in the informal care for the patient and consequently in the psychosocial well-being of the caregiver, both a literature study and a cohort study of the prevalence of and risk factors for caregiver burden were performed. In addition, informal caregivers were interviewed to provide more insight into their experienced psychosocial well-being and needs, the impact of informal care on the relationship with the patient and their expectations for the future. The psychosocial well-being of informal caregivers after the death of their loved one with cancer was also explored. Secondly, both an explorative study and an intervention study, with before-and-after study design, were performed to investigate how an informal care group could be supported in an adjusted manner by professional care providers. The tailor-made support consisted of a self-management tool, supporting the informal care groups to make informed choices concerning the care for the older patient, taking into account the standards, values, concerns and needs of every caregiver and patient. Third, to explore whether vulnerable older patients without informal caregivers can be supported by a caring neighborhood network, an action study was started in a neighborhood within Leuven.

Results

From existing literature, we found no clear answers about the psychosocial well-being of informal caregivers of older cancer survivors. Methodology, study populations, outcome measures and described risk factors largely differed. There seemed to be a higher risk on distress, a lower quality of life and more anxiety among these informal caregivers, but all of these outcome measures were insufficiently investigated. Based on a prospective cohort study in both informal caregivers and their patients, subdivided into three groups (older cancer survivors, middle-aged cancer survivors and older patients without cancer), risk factors associated with caregiver burden have been identified. Overall, more than sixteen percent of caregivers experienced high to severe burden at baseline. This proportion remained stable after 1 and 3 years. Caregivers who experienced increased caregiver burden at baseline were at higher risk maintaining their caregiver burden over the following years. Caregiver burden was not related to the cancer diagnosis, but rather to the baseline psychosocial well-being of both the caregiver and patient and the physical condition of the patient. From the in-depth interviews with individual caregivers, the general tendency among informal caregivers seems to be that caring for a dependent relative is self-evident. Spousal caregivers in particular see caregiving as a natural extension of their role as a partner. Non-spousal caregivers also believed that it is obvious to take care of an older relative. However, they are the ones who dare to question informal care in general and admit that it is sometimes burdensome. Having and maintaining social contact is very important for informal caregivers. The connection with family, with the immediate environment or even with the community seems to have more impact on wellbeing than the objective care load. The cancer patient’s diagnosis is often the starting point for informal care, which becomes permanent in most cases. The interviewed informal caregivers of patients without cancer indicate that caregiving often evolves more gradually and does not seem to stabilize. These informal caregivers seem to be more aware of the future challenges and are concerned about their own capacities and limitations. Informal caregivers of deceased cancer patients emphasized that the mourning associated with the loss of the patient often started before the decease. After the patient passed away, loneliness is a dominant feeling also due to the absence of the caregiving tasks and the decreased availability of healthcare professionals. Social contacts can ease these feelings of loneliness, even for informal care groups. Despite the solidarity and good mutual understanding, these caregivers also described caregiver burden and depressive symptoms. Although patients and caregivers considered the self-management tool as useful and supportive, no significant evidence of a decrease in caregiver burden was found. However, after using the self-management tool, in the care groups the distribution of tasks, the quality of communication and the prevalence of conflicts positively evolved. Caregivers also stated that they took more time for themselves, had less feelings of guilt and experienced less barriers to ask help. But, all varied greatly within and between the informal care groups. Supporting older patients without informal caregivers by an informal care network appeared to be a major challenge for various reasons. It turned out not to be easy to recruit volunteers to set up a care network. Second, the community services and professional care providers handle different principles and approaches: e.g., there was no consent on the definition of the term "vulnerability". The strengths of its residents rather than their vulnerability seems to be the possible starting point of a caring neighborhood or network

Conclusion

Becoming an informal caregiver usually overcomes one, although the role was mostly self-evident. But, it is not an obvious role and the risk of caregiver burden is considerable. Not only practical and professional support, but above all social and emotional support is essential for informal caregivers. Having a back-up seemed not only to be practical, but especially psychosocially essential in the prevention of caregiver burden. However, the realization of a supportive social network appears to be a complex exercise without a solid professional framework in which all care providers involved are aligned. Tailor-made support for informal caregivers of older patients should therefore consist of a professional network where the informal caregiver takes care of his or her care-recipient aiming at the best psychosocial and physical condition. The diagnosis of the patient does not seem to be the most important predictor of caregiver burden, but rather the social framework of the patient and caregiver do. Communication and permanent coordination between informal caregivers, with professional caregivers and with the patient is therefore necessary.

Date:17 Jun 2015 →  3 Sep 2020
Keywords:Informal care, Ageing population, Psychosocial well-being
Disciplines:Public health care, Public health sciences, Public health services, Education curriculum
Project type:PhD project