Focus group exercise to identify links between patient services and carer wellbeing. Circles indicate pre-defined outcomes (Brouwer et al., 2006; Deeken et al., 2003; Al-Janabi et al., 2008) and the rectangle is example of patient intervention or aspect of service delivery. Note: Intervention prompts (cards) were: medication, psychological intervention, rehabilitation, complementary/ alternative therapy, and social care. Service delivery cards were: inpatient care, transfers between services, involvement of family, funding/organisational changes, and location of care. Participants were also provided with blank cards.

Focus group exercise to identify links between patient services and carer wellbeing. Circles indicate pre-defined outcomes (Brouwer et al., 2006; Deeken et al., 2003; Al-Janabi et al., 2008) and the rectangle is example of patient intervention or aspect of service delivery. Note: Intervention prompts (cards) were: medication, psychological intervention, rehabilitation, complementary/ alternative therapy, and social care. Service delivery cards were: inpatient care, transfers between services, involvement of family, funding/organisational changes, and location of care. Participants were also provided with blank cards.

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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 servi...

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Context 1
... feeling inhibited talking about experiences of service delivery. The focus group began with introductions and a brief discussion of the way in which providing family care affected quality of life. In this first phase, participants were invited to identify any links between patient services and aspects of a carer's quality of life, using cards ( Fig. 1). Eight domains of life and ten broad categories service delivery were identified in advance (Fig. 1). This was done to help the participants to focus on identifying any links between patient service delivery and impacts on the carer's life. The eight domains of carer life were based on a synthesis of studies on carer quality of life ( ...
Context 2
... and a brief discussion of the way in which providing family care affected quality of life. In this first phase, participants were invited to identify any links between patient services and aspects of a carer's quality of life, using cards ( Fig. 1). Eight domains of life and ten broad categories service delivery were identified in advance (Fig. 1). This was done to help the participants to focus on identifying any links between patient service delivery and impacts on the carer's life. The eight domains of carer life were based on a synthesis of studies on carer quality of life ( Brouwer et al., 2006;Deeken et al., 2003;Wittenberg et al., 2013;Al-Janabi et al., 2008). The cards ...
Context 3
... interviews had the same broad objective as the focus groups. However, the discussions focused on the services where participants had particular experience. The chart shown in Fig. 1 was used to facilitate discussions, although no cards were ...

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... Specifically, these wider impacts may result from the individual's health condition, the intervention targeting it, or both [1]. In this paper, spillover effects refer to the overall impacts, including the psychological, physical, financial and emotional burdens, both positive and negative, experienced by parental carers while caring for a sick child [2]. ...
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... When carer HRQoL estimates are appended to existing health states, carer HRQoL estimates per health state are required. However, more mechanisms might play a role in this relationship and might not be represented in the model health states, including management of care and timing or location of services (Al-Janabi et al., 2019). Also, if it can be argued that the intervention affects carer HRQoL both directly (e.g. through factors such as location, timing, information provision, and involvement of family) and indirectly (i.e. through changes in patient health), treatment-dependent carer HRQoL data might be applied to model health states. ...
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... If a health care intervention improves the HRQoL of a child and therefore improves the HRQoL of family members, ignoring the improvement in family member HRQoL due to the child's intervention underestimates the value of the intervention. It is recognized that the health of a child and their treatment can impact the health and overall wellbeing of family members in multiple ways [100] . Researchers were inconsistent in deciding which family member to include, and they employed various approaches to measure, integrate, and report the family spillover effects in pediatric CUA. ...
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A child’s health condition affects family members’ health and well-being. However, pediatric cost-utility analysis (CUA) commonly ignores these family spillover effects leading to an incomplete understanding of the cost and benefits of a child’s health intervention. Methodological challenges exist in assessing, valuing, and incorporating family spillover effects. This study systematically reviews and compare methods used to include family spillover effects in pediatric CUAs. A literature search was conducted in MEDLINE, Embase, EconLit, Cochrane collection, CINAHL, INAHTA, and the Pediatric Economic Database Evaluation (PEDE) database from inception to 2020 to identify pediatric CUAs that included family spillover effects. The search was updated to 2021 using PEDE. The data describing in which family members spillover effects were measured, and how family spillover effects were measured, incorporated, and reported, were extracted. Common approaches were grouped conceptually. Further, this review identified theories or theoretical frameworks used to justify approaches for integrating family spillover effects into CUA. Of 878 pediatric CUAs identified, 35 included family spillover effects. Most pediatric CUAs considered family spillover effects on one family member. Pediatric CUAs reported eight different approaches to measure the family spillover effects. The most common method was measuring the quality-adjusted life years (QALY) loss of the caregiver(s) or parent(s) due to a child’s illness or disability using an isolated approach whereby family spillover effects were quantified in individual family members separately from other health effects. Studies used four approaches to integrate family spillover effects into CUA. The most common method was to sum children’s and parents/caregivers’ QALYs. Only two studies used a theoretical framework for incorporation of family spillover effects. Few pediatric CUAs included family spillover effects and the observed variation indicated no consensus among researchers on how family spillover effects should be measured and incorporated. This heterogeneity is mirrored by a lack of practical guidelines by Health Technology Assessment (HTA) agencies or a theoretical foundation for including family spillover effects in pediatric CUA. The results from this review may encourage researchers to develop a theoretical framework and HTA agencies to develop guidelines for including family spillover effects. Such guidance may lead to more rigorous and standardized methods for including family spillover effects and better–quality evidence to inform decision-makers on the cost-effectiveness of pediatric health interventions.
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... Despite unpaid care being the backbone of LTC systems, its indirect costs remain largely invisible. Many carers, not least women who provide more unpaid care than men, experience significant financial, social, and psychological strain from their caregiving role (especially when intensive) as it can crowd out paid work, leisure, and social interaction, or be otherwise detrimental to health and well-being (Al-Janabi et al., 2019;Carmichael & Charles, 2003;Pinquart & Sörensen, 2003;Van Houtven et al., 2019). All European nations will need to increase labour supply in the coming years, especially among older workers (50 +) and women, though it is unclear how unpaid care needs will impact this. ...
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Given population ageing and the emphasis on in-home care, more working-age adults are facing the demands of providing unpaid care to the elderly with potential implications for their own well-being. Such effects likely vary across Europe because care is differently organized with a differing emphasis on public support, dependence on family, and orientation toward gender equality. We studied the relationship between unpaid caregiving for elderly parents and the psychological well-being of older working-age (50–64) men and women by analysing data from the Survey of Health, Retirement, and Ageing in Europe (SHARE), covering 18 countries between 2004 and 2020 (N = 24,338), using ordinary least squares (OLS). We examined risk of depression by caregiving intensity and tested whether coresidence mediated outcomes. Men and women providing care to parents experience important psychological well-being losses across Europe, especially when caregiving is intensive. A heavier caregiving burden associated with coresidence explains a regime gradient in depression, not least for women in Southern Europe. Results highlight the spillover costs of unpaid caregiving across Europe and the need to address caregiver psychological well-being, especially in contexts where state support for elder care is low and coresidence is common.
... This relationship between the care recipient and carer has previously been proposed as an advantage of the CES in capturing broader aspects of caring [7,15,16]. Given the possible interdependence of care recipient and carer QoL [41][42][43], instruments capturing both could be included in economic evaluations of carer and patient interventions to fully capture the effects of an intervention [44]. However, consideration also needs to be given to the type of evaluation being performed, the perspective taken and the possibility of double counting which could overestimate the benefits of an intervention [2,45]. ...
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Purpose Identify aspects of quality of life (QoL) important to Australian informal carers and explore how well the Adult Social Care Outcomes Toolkit for Carers, Care-related Quality of Life instrument and Carer Experience Scale capture these aspects in the Australian context. Methods Online questionnaires were completed by Australian informal carers. Socio-demographics, open-ended questions: positive/negative aspects of caring and QoL aspects missing from the instruments, and ranking of the instrument domains was used to explore the content of the instruments. Instruments were scored using preference-weighted value sets (reported in another paper). Content analysis was used to analyse the open-ended responses. Chi-squared test looked at differences in domain importance. Descriptive analyses summarised all other information. Results Eight themes were identified: Behaviour-mood of the care recipient, Caring responsibilities, Finances, Health, Own life, Perception of carers, Relationship with care recipient and Support. Many aspects of carer QoL mentioned as missing in the instruments appeared covered by the domains, of which all were reported as important. The highest ranked domain was relationship with the care recipient. The influence of the care recipient specific support, behaviour/mood and health on carer QoL appear absent in all instruments. Conclusion The content of the three instruments appears relevant in an Australian setting. The influence of care recipient’s health and well-being on carer QoL should be considered, along with spillover effects. A content and/or face validity analysis is required to confirm differences in item interpretation in Australian informal carers.