Are reasons for care‐giving related to carers’ care‐related quality of life and strain? Evidence from a survey of carers in England

Abstract

In England, choice and control is promoted for service users in relation to social care services. Increased choice and control has also been promoted for unpaid carers, although this is still relatively underdeveloped. There is limited recognition of carers' choice in terms of the decision of whether to provide care. Alongside the promotion of choice and control, there has also been a focus on quality of life as an outcome of social care for care-recipients and their carers. Although it is known that carer choice (in terms of the decision of whether or not to provide care) is related to increased burden and poorer psychological health, there is limited evidence of the relationship between reasons for caring and care-related quality of life (CRQoL) and subjective strain in England. In this study, 387 carers were surveyed across 22 English local authorities between June 2013 and March 2014. Multiple regression analysis explored the relationship between carer-reported reasons for caring and CRQoL and strain, whilst controlling for individual characteristics (e.g. age). Reasons for caring were important predictors of CRQoL and strain. Where people were carers because social services suggested it or the care-recipient would not want help from anyone else, this was related to lower CRQoL. By contrast, where carers took on care-giving because they had time to care, this was significantly associated with better CRQoL. Carers reported greater strain where they provided care because it was expected of them. These findings are relevant to policy and practice because they indicate that, while social care systems rely on carers, the limiting of carers' choice of whether to provide care is related to worse outcomes. Increased awareness of this relationship would be beneficial in developing policy and practice that improves the QoL of care-recipients and also their carers.

Caregiver Choice and Caregiver Outcomes: A Longitudinal Study of Irish Spousal Dementia Caregivers

“…The finding that lack of choice, both in terms of taking up the caregiving role and the perceived degree of choice in caregiving, was not associated with poorer caregiver health, and well-being outcomes was unexpected. It is, however, in line with one study which found that willingness to care did not significantly predict quality of life or strain (Rand et al, 2019). It is possible that our findings differed from other studies because we assessed relationships over time, rather than cross-sectionally; however, few significant correlations were observed between our measures of choice and caregiver outcomes even at baseline.…”

“…Furthermore, studies that have examined reasons for caregiving, which are tied to caregiver choice, have also found associations with poorer caregiver wellbeing. For example, the perceived lack of availability or suitability of other care options predicted poorer care-related quality of life in a mixed sample of English caregivers, though no significant relationships were observed between personal choice/willingness to care, and measures of quality of life or strain (Rand et al, 2019). Other studies suggest that intrinsic motivations to care are associated with positive caregiver mental health, while external motivations or pressures predict negative outcomes such as stress, anxiety, depression, and anger (Lyonette and Yardley, 2003; Losada et al, 2010; Romero-Moreno et al, 2011; Kim et al, 2015).…”

“…However, there is no equivalent acknowledgement that caregivers should also be able to exercise personal choice in terms of whether and how they provide care. Caregiver choice is constrained by a multitude of factors that include, but are not limited to, caregivers’ personal values and/or societal norms of responsibility and reciprocity, which may lead to a sense of duty to provide care; care-recipients’ own wishes for their care; the lack of tangible assistance from other family members and/or the state; and financial constraints and/or the inadequacy of available services that limit alternative care options (Robinson-Whelen and Kiecolt-Glaser, 1997; Al-Janabi et al, 2018; Rand et al, 2019). Furthermore, opportunities for choice may vary depending on the nature of the care-recipients’ condition and the level of care that is required.…”

Enhancing primary care support for informal carers: A scoping study with professional stakeholders

“…Being a carer is associated with poorer mental and physical health (Hiel et al, ; Peters, Jenkinson, Doll, Playford, & Fitzpatrick, ; Thomas, Saunders, Roland, & Paddison, ) and poorer experiences of using primary care (Thomas et al, ). A study of carers in England found that people who choose to be carers had better quality of life and less carer strain than people who provided care as it was expected of them (Rand, Malley, & Forder, ). Poorer experiences of services are associated with poorer carer quality of life (Peters et al, ).…”

Caregivers’ engagement during in‐hospital care of sABI’s patients: Evaluation of informal co‐production from the health providers’ perspective

“…The consequences of sABI are known to affect not only the patients themselves but also their families. Indeed, regardless of the severity of the injury, family members often feel high levels of strain both in the in‐hospital admission and in the discharge phases because individuals with sABI are for the most part unable to manage their social life and dramatically depend on them (Bivona et al., 2015; D’Ippolito et al., 2018; Koskinen, 1998; Kratz, Sander, Brickell, Lange, & Carlozzi, 2017; Kreutzer et al., 2018; Rand, Malley, & Forder, 2019). The higher risk of strain is, anyhow, for the family member (a relative or a close friend) who acts as an informal caregiver (hereafter, IC) and specifically cares for the loved one with significant health issues, through voluntary and unpaid help, regardless of their experience or specialised knowledge (Spann et al., 2019).…”