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- Andréasson, Frida
(författare)
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Doing informal care : Identity, couplehood, social health and information and communication technologies in older people’s everyday lives
- 2021
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The aim of the thesis has been a) to analyse how informal care influences the identity of carers and care recipients, their sense of couplehood and social health, and b) to explore the use of Information and Communication Technology (ICT) in the context of informal care and the everyday lives of older people. Study I focused on how older carers conceptualised their identity as carers on a Swedish online social forum, using a netnographic methodology. The findings indicated a change in self-perception as the carer role was acquired. Carers’ capacities were filtered through the needs of the care recipient, making their carer identities into invisible selves. The findings revealed that online communication had the potential to create a virtual space of social recognition. Study II aimed to reflect on carers’ experiences of participation in a co-design process consisting of user group sessions with carers and researchers. The goal was to develop a web-based support programme for carers. The findings emphasised a need to consider carers’ lifeworlds and to develop flexible human-centred design methodologies, that are able to balance carers’ needs and ideas with proposed research outcomes. Studies III and IV utilised an ethnographic methodology. In study III, the notion of couplehood in informal care was analysed. The findings showed that in the process of becoming a carer and a care recipient previous (often gendered) responsibilities were re- negotiated and new practicalities emerged. Although these changes were understood as a natural part of family life, they nevertheless led to changes in the (power) balance between spouses, expressed in terms of a professionalised relationship and a sense of social isolation. ICT was used as a means to get a respite from caring and uphold a social connection with others. In study IV, the social implications and consequences of spousal informal care and carers and care recipients’ experiences of illness and the ill body was explored. The findings showed that the participants experienced barriers to living life as before. Thoughts about or the presence of ill and “leaking” bodies thus lead to “self-chosen” social isolation or social distancing by others. The thesis highlights that informal care needs to be understood as an identity forming practice, having a significant impact on involved parties’ sense of couplehood, their social health and that ICT can contribute to ease carers’ and care recipients’ daily life.
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| 2. |
- Andersson, Stefan
(författare)
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Information and Communication Technology : mediated support for working carers of older people
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Despite a growing awareness of the importance of support for carers who combine paid work with care of an older relative, so called ‘working carers’, there remains a lack of empirical knowledge about more innovative ways to support this largest group of carers of older people. Information and Communication Technologies (ICTs) are becoming more readily available. As a result, ICTs have made it feasible to offer working carers more targeted forms of support.This thesis aimed to gain an understanding about support for working carers of older people via the use of ICT.An integrative literature review was conducted to explore and evaluate the current evidence base concerning the use of ICT-mediated support for working carers (I). Content analysis of qualitative data was used to describe nursing and support staff’s experiences of using web-based ICTs for information, e-learning and support of working carers (II). Content analysis was also used to describe working carers’ experiences of having access to a web-based family care support network provided by the municipality (III). Descriptive statistical methods were used to analyse survey data which focused on the types of support received and how they were valued by working carers, with a focus on ICT support (IV).Findings highlighted that ICT mediated support provided working carers with the means to manage their caring situation, via the provision of information, e-learning and education, in addition to practical assistance and emotional and/or physical respite from caregiving. In this way, working carers felt empowered in their caring situation by feeling more competent and prepared in their caring role and by strengthening their self-efficacy and positive self-appraisal of their situation. Carers were provided channels to share their frustrations and burdens via forums for emotional and social support between working carers, caring professionals, and other peer carers. This led to working carers feeling less burdened by their caregiving role and it helped promote their wellbeing. Further, carers were helped in some instances to balance work and care. As a result caregiving activities conflicting with work obligations were then lessened.In contrast, when ICT mediated support was neither provided in a timely fashion or in accordance with individual carers’ needs and preferences, then it was perceived by them to be unimportant. Cross-sectional data revealed that take-up of support services was low suggesting that unmet support needs may be inflated by work-care conflicts. For carers with lower digital skills, the additional time needed to learn to use ICTs was a further barrier.Overall, ICT mediated support acted as a complementary form of support for working carers. Measures to overcome dis-empowering aspects of this innovative from of support are needed to avoid working carers’ deprioritizing their own support needs and also to avoid possible digital exclusion from the current information society.
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| 3. |
- Malm, Camilla
(författare)
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Involving informal carers in health and social care research
- 2022
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overarching aim of this thesis is to gain a deeper understanding of informal carer involvement in health and social care research, from the perspective of informal carers themselves as well as from a researcher perspective.The thesis is comprised of three qualitative studies and one quantitative study. Three studies are from the perspective of informal carers, and one is from the perspective of researchers. The three qualitative studies used qualitative content analysis and discourse psychology, while the quantitative study used descriptive statistics, logistic regression and two different types of factor analysis. The data collection methods varied; in the first and the fourth studies, the data were derived from individual interviews, in the second study participants completed a questionnaire, and in the third study the data were collected from group meetings with carers.The findings showed that carer involvement in research is complex, comprising both benefits and challenges, and demands a high level of engagement from all involved, throughout the research process. The researcher must acknowledge that carers’ motivations for involvement in research vary, and the researcher should adapt their recruitment methods accordingly. It is easy to believe that becoming involved in research is an individual choice, but the findings revealed that only some carer groups choose to become involved in research. The findings also showed that the knowledge brought by carers to the research stretches far beyond their practical experiences of caring. When researchers choose to involve carers in research, their research would benefit greatly if they acknowledged the possibility that they themselves might become relationally and emotionally involved.Successful carer involvement in research therefore encompasses both a meaningful process and a meaningful result. As carers are a heterogeneous group, this places demands on a researcher’s flexibility and creativity to manage the recruitment process and involve a broad cross section of carers. If they fail in this, the research carried out and any interventions developed risk being valid for particular groups of carers and invalid in relation to other carer groups.
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| 4. |
- Watland, Solbjørg, et al.
(författare)
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The Caregiver Pathway, a Model for the Systematic and Individualized Follow-up of Family Caregivers at Intensive Care Units : Development Study
- 2023
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Ingår i: JMIR Formative Research. - : JMIR Publications. - 2561-326X. ; 7
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Tidskriftsartikel (refereegranskat)abstract
- Background: Family caregivers of patients who are critically ill have a high prevalence of short-and long-term symptoms, such as fatigue, anxiety, depression, symptoms of posttraumatic stress, and complicated grief. These adverse consequences following a loved one's admission to an intensive care unit (ICU) are also known as post-intensive care syndrome-family. Approaches such as family-centered care provide recommendations for improving the care of patients and families, but models for family caregiver follow-up are often lacking.Objective: This study aims to develop a model for structuring and individualizing the follow-up of family caregivers of patients who are critically ill, starting from the patients' ICU admission to after their discharge or death.Methods: The model was developed through a participatory co-design approach using a 2-phased iterative process. First, the preparation phase included a meeting with stakeholders (n=4) for organizational anchoring and planning, a literature search, and interviews with former family caregivers (n=8). In the subsequent development phase, the model was iteratively created through workshops with stakeholders (n=10) and user testing with former family caregivers (n=4) and experienced ICU nurses (n=11).Results: The interviews revealed how being present with the patient and receiving adequate information and emotional care were highly important for family caregivers at an ICU. The literature search underlined the overwhelming and uncertain situation for the family caregivers and identified recommendations for follow-up. On the basis of these recommendations and findings from the interviews, workshops, and user testing, The Caregiver Pathway model was developed, encompassing 4 steps: within the first few days of the patient's ICU stay, the family caregivers will be offered to complete a digital assessment tool mapping their needs and challenges, followed by a conversation with an ICU nurse; when the patient leaves the ICU, a card containing information and support will be handed out to the family caregivers; shortly after the ICU stay, family caregivers will be offered a discharge conversation by phone, focusing on how they are doing and whether they have any questions or concerns; and within 3 months after the ICU stay, an individual follow-up conversation will be offered. Family caregivers will be invited to talk about memories from the ICU and reflect upon the ICU stay, and they will also be able to talk about their current situation and receive information about relevant support.Conclusions: This study illustrates how existing evidence and stakeholder input can be combined to create a model for family caregiver follow-up at an ICU. The Caregiver Pathway can help ICU nurses improve family caregiver follow-up and aid in promoting family-centered care, potentially also being transferrable to other types of family caregiver follow-up.
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