Exploring Carers' Views and Experiences of Being Involved in Research and Development Work

Exploring Carers' Views and Experiences of Being Involved in Research and Development Work

Ria Mardiana Yusuf
Copyright: © 2020 |Pages: 14
DOI: 10.4018/IJSKD.2020100103
This article was retracted


This article aims to move knowledge beyond the first response, by outlining a framework for interpreting and evaluating the experiences of carers regarding their involvement in R&D work. The study adopted a descriptive and explorative qualitative design. The inclusion criterion to enroll in the study was being a career and having participated in an FGI in the ICS consultation phase. The sample of twelve participants ranged in age from 35 to 77 years (mean value 60 years). Data collection consisted of individual interviews, via the “Zoom” videoconference system, telephone or face-to-face, depending on the preferences of the participants. Face-to-face interviews were conducted at the university or a café. The result is participants emphasized the significance of lived experience and practical knowledge. There is a limited amount of systematic research carried out that also actively takes into account possible negative experiences, barriers, and issues.
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1. Introduction

Should caregivers be brought in as partners in the development and research (R&D) of work related to care, care and informal caregivers? The answer to this question is that the first in more than one case did not think of user contributions as 'win-win' situations and generally were positive (Kylberg, Haak, & Iwarsson, 2017). This research has goals to change the place of knowledge through the first answer based on interviews with informal caregivers. By broadening the CRAC framework, according to the theme of Reciprocity, Advocacy, and Community, to make evaluations and make interpretations of caregiver experiences about their role.

Unrelated to the history of a generous welfare state system, informal care for disabled people and older people is increasingly 'surrendered' to families. Therefore, the key is informal caregivers, but not infrequently it is not considered as part of Indonesia's care and health system. The number of individuals caring for family members in the following years has skyrocketed. in Indonesia At least one in five adults provides routine care for other important people and family members, provides support and assistance, and one third of these 1.3 million people do it every day (SNAO 2014). It is important to ensure that the opinions of guards are respected and considered in the social arena are not the same, because being a caregiver can affect people's well-being, participation, health, work and finance (Buckner & Yeandle 2015; Erlingsson, Magnusson, & Hanson, 2011; Eurofound, 2015 ; NBHWS, 2012).

Related to self-understanding and daily life (Andréasson, Andreasson, & Hanson, 2017). for reasons of identity development, the process of becoming a caregiver often involves changing lives (Kosloski, 2009). Identities that are shown to others such as "being a caregiver" can have a significant effect on the procedure in view of oneself. not infrequently the fellowship experienced has emotional significance and bond (Hammarén & Johansson, 2009). Collective identity is united by ambition, experience is created on homogeneity and the image of fellowship, and shared interests can lead to the underestimation of heterogeneity within groups (Hammarén & Johansson, 2009). besides being built in relation to other people, the reality of the collective caregiver's identity is indeed heterogeneous (Montgomery & Kosloski, 2009). Some caregivers have all used it, while others do not interpret themselves as carers, but only someone who "exists", proposes support to someone who has a bond or relationship (Andréasson, Andreasson, & Hanson, 2017; Healey, 2012). Iliffe et al. (2010) called these people "invisible caregivers" and because they did not receive or were offered supportive treatment from the formal field, putting pressure on them would have a significant effect.

To prevent caregivers from adding to their own health problems, contributions in the form of demands and usually spending everyone to become caregivers require appropriate support from friends, family and the formal field (NBHWS, 2016). (Spasova et al., 2018) states that Demographic trends in recent years that have been collaborated with fiscal constraints have been the cause of the decline in sustainable services, leading to new goals. Some of these changes created awareness among researchers and policy makers together with increasing civil society opinion regarding the important need for effective contributions to carers and who were more timely (SNAO, 2014).

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