• The scope of carer effects and their inclusion in decision-making: A UK-based Delphi study

      Al-Janabi, H.; Efstathiou, N.; McLoughlin, C.; Calvert, M.; Oyebode, Jan R. (BMC, 2021-07)
      Background and objective: Health and social care may affect family carers’ health and wellbeing in addition to patients’ lives. It is recommended that such impacts (carer effects) are considered in decision-making. However, the scope of carer effects and range of decisions where carer effects should be considered is uncertain. This study aimed to identify (i) how different categories of healthcare and social care were perceived to impact on family carers and (ii) whether there was consensus about when carer effects should be formally considered in decision-making contexts. Methods: A Delphi study was conducted with 65 UK-based participants with expertise in dementia, mental health, and stroke. Participants considered two broad forms of ‘interventions’ (patient treatment and replacement care) and two broad forms of ‘organisational change’ (staffing and changes in timing/location of care). Participants assessed the likely impacts of health and social care on family carers and whether impacts should be considered in decision-making. The survey was conducted remotely at two time points. Results: Participants predicted widespread impacts from interventions and organisational changes on different domains of family carers’ lives, with ‘emotional health’ the most likely outcome to be affected. Patient treatment and replacement care services (‘interventions’) were associated with positive impacts across all domains. Conversely, timing/location changes and staffing changes (‘organisational changes’) were perceived to have mixed and negative impacts. There was widespread support (80-81%) for considering carer effects in research studies, funding decisions, and patient decision-making. Conclusion: This study highlights a perception that carer effects are widespread and important to consider in economic evaluation and decision-making. It highlights the particular need to measure and value effects on carers’ emotional health and the need to use a societal perspective to avoid cost shifting to family carers when introducing interventions and making organisational changes.
    • Six mechanisms behind carer wellbeing effects: A qualitative study of healthcare delivery

      Al-Janabi, H.; McLoughlin, C.; Oyebode, Jan R.; Efstathiou, N.; Calvert, M. (2019-08)
      Health and care services for patients may improve or harm the wellbeing of their family carers. Formal consideration of these effects (also known as spillovers) in decision-making is advocated, but, to date, little is known about how they occur. This paper presents the first empirical study to determine the mechanisms by which health and care services affect family carers' wellbeing. The study focused on three major health conditions: dementia, stroke, and mental health. Focus groups and interviews were conducted with 49 purposefully sampled care professionals and family carers in the UK between December 2016 and September 2017. Transcripts were coded and analysed thematically, using descriptive accounts and an explanatory account. The analysis generated six over-arching mechanisms by which health and care services affect family carers' wellbeing, through: (i) information (degree to which service delivery informs and trains family carers); (ii) management of care (shifts of responsibility for care between formal and family sectors); (iii) patient outcomes (services changing patient outcomes); (iv) alienation (feelings of alienation or inclusion created by service delivery); (v) compliance (barriers to patients complying and engaging with services); and (vi) timing or location (changes in the timing or location of services). Each mechanism was associated with sub-themes relating to both positive and negative spillovers on the family carers. The six mechanisms can be summarised with the mnemonic ‘IMPACT’. The IMPACT mechanisms may be useful in designing and evaluating services to optimise the wellbeing of carers as well as patients.