Assessing care-giving demands, resources and costs of family/friend caregivers for persons with mental health disorders: A scoping review

Abstract

As mental health (MH) care has shifted from institutional settings to the community, families and friends are responsible for providing the majority of the care at home. The substantial literature on the adverse effects experienced by caregivers has focused mainly on psychological morbidity. Less attention has been paid to how caregivers for persons with MH disorders interact with larger social systems and the impacts of factors such as financial strain, lost time from leisure activities, and the availability of health and social services. We conducted a scoping review of MH and other caregiver questionnaires published between 1990 and 2016 to determine whether they addressed four key domains: caregiver work demands, resource needs, resource utilisation and costs. A range of health and social care databases were searched, including MEDLINE and Health and Psychosocial Instruments. After screening for relevance and quality, our search identified 14 instruments addressing elements related to one or more of our domains. Because these instruments covered only a small portion of our domains, we conducted a second targeted search of the general care-giving literature and consulted with experts, identifying an additional 18 instruments. A total of 32 questionnaires were reviewed, 14 specific to care-giving for mental health problems and 18 for other health conditions. Our search identified instruments or items within instruments that assess constructs in each of our domains, but no one instrument covered them completely. Additionally, some constructs were evaluated in detail and others only addressed by single items. While these instruments are helpful for moving measurement beyond the psychological impacts of care-giving, our results serve only as an initial guide. Additional methodological work is needed to more comprehensively measure the impact of care-giving for individuals with MH disorders and to contribute to the development of more meaningful and effective policies and programmes. K E Y W O R D Scare-giving, measurement, mental health, questionnaire, scoping review 2 | LIN et aL. | INTRODUCTIONAs the primary site of mental health (MH) care has shifted from the institutional setting to the community, the role of family members and friends in the care of individuals who have mental health problems has also shifted (Ohaeri, 2003). Most mental health problems begin before age 25 (Kessler et al., 2007) when parents and other family members are already negotiating multiple roles including parenting, supporting ageing parents and managing careers. Many individuals will achieve full recovery from their mental health problems. However, others will experience significant work and social sequelae and, depending on their specific illness, may require either ongoing or episodic help from family and friends throughout their lives. Systems of care exist and are being further developed to support people with mental health problems living in the community; however, the demands on family, friends and caregivers remain su...

Well‐being and needs of Malay carers of people with mental illness in Singapore

“…The financial burden of caring for someone with mental illness was commonly reported in care‐giving studies (Lin et al., 2018) which was also found in this study (Theme 3, Subtheme 2). Although there are some financial assistance schemes for people with mental illness in Singapore, there are no dedicated schemes to help carers financially.…”

“…Therefore, findings of this study suggest that some carers in Singapore may lack adequate information and are not involved actively in the treatment discussion and planning. Given that support from families is crucial in the recovery process of people with mental illness, failure to involve them will The financial burden of caring for someone with mental illness was commonly reported in care-giving studies (Lin et al, 2018) which was also found in this study (Theme 3 The need for respite care of people with mental illness was also reported by carers (Theme 3, Subtheme 3). This is not a new finding as numerous care-giving studies reported this need as well (Jardim & Pakenham, 2010).…”

Factors Contributing to Employment Status over Time for Caregivers of Young People with Mental Health Disorders

“…Taking a conservation of resources perspective, we argue that behavioral health services and other family supports may increase caregiver participation in the paid labor force, allowing for the accumulation and protection of resources. Additional research is needed to assess the impact of specialized services and supports for youth with mental health challenges on caregiver employment [ 45 ].…”

Caregiver-Reported Burden in RE-KINECT: Data From a Prospective Real-World Tardive Dyskinesia Screening Study

“…Although caregiving helps decrease patient burden, caregivers themselves can be negatively affected (Del-Pino-Casado et al, 2021;Liu et al, 2020;Pinquart & Sorensen, 2003;Schulz & Beach, 1999). Caregivers may experience poorer physical and mental health, diminished life expectancy, financial strain, loss of productivity, inability to work, and social isolation (Adelman et al, 2014;Greenwood et al, 2018;Lin et al, 2018;Pinquart & Sorensen, 2003;Schulz & Beach, 1999).…”