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“I Am a Caregiver”: Sense-making and Identity Construction through Online Caregiving Narratives

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Abstract

The all-consuming role and responsibilities of providing care to an aging parent or spouse create identity disruption and stress. However, this stress may be resolved as family caregivers integrate the role of caregiver into their identity and construct an aspect of their identity around providing care (i.e., caregiver identity). Rooted in the retrospective heuristic of communicated narrative sense-making theory (CNSM), this paper investigates the identities family caregivers construct through online narratives about their caregiving experiences. Using thematic narrative analysis to analyze a corpus of 40 online narratives, this study yielded four distinct caregiver identities: the prisoner, which is defined by a sense of being trapped by the responsibility of caregiving; the crumbling caregiver, which focuses on extreme exhaustion in providing care; the companionate caregiver, which focuses on the relational aspects of providing care; and the redeemed caregiver, which is defined by growth through difficulty.

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... While there are studies that have relied on structured interviews with familial caregivers [25,26], we are aware of only one that has utilized social media to gain insight into caregiving concerns: Cooper (2021) [27] utilized caregiver narratives derived from three online platforms that invited users to share their experiences in a free-form narrative, with a focus on examining the online identities family caregivers build in their narratives. In this study, we leveraged public content posted pseudonymously by users of the social media platform Reddit (Reddit.com), ...
... While there are studies that have relied on structured interviews with familial caregivers [25,26], we are aware of only one that has utilized social media to gain insight into caregiving concerns: Cooper (2021) [27] utilized caregiver narratives derived from three online platforms that invited users to share their experiences in a free-form narrative, with a focus on examining the online identities family caregivers build in their narratives. In this study, we leveraged public content posted pseudonymously by users of the social media platform Reddit (Reddit.com), ...
... In a study focused on the analysis of free-form narratives of personal caregiving experiences using thematic narrative analysis [11,12], the authors identified four unique caregiver identities that provided insight on the negative and positive aspects of caregiving [27]. These included two groups who perceived caregiving as highly burdensome and two other groups who perceived their role in more positive terms. ...
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Almost 40% of US adults provide informal caregiving, yet research gaps remain around what burdens affect informal caregivers. This study uses a novel social media site, Reddit, to mine and better understand what online communities focus on as their caregiving burdens. These forums were accessed using an application programming interface, a machine learning classifier was developed to remove low information posts, and topic modeling was applied to the corpus. An expert panel summarized the forums’ themes into ten categories. The largest theme extracted from Reddit’s forums discussed the personal emotional toll of being a caregiver. This was followed by logistic issues while caregiving and caring for parents who have cancer. Smaller themes included approaches to end-of-life care, physical equipment needs when caregiving, and the use of wearables or technology to help monitor care recipients. The platform often discusses caregiving for parents which may reflect the age of Reddit’s users. This study confirms that Reddit forums are used for caregivers to discuss the burdens associated with their role and the types of stress that can result from informal caregiving.
... Although numerous studies recognize the existing narrative-identity issues within the caregiving role [13][14][15][16], there is no study available that explored the potential of applying or adapting the narrative approach to accommodate shifts in self-identity of informal caregivers. Informal caregivers often place caregiving activities into primary focus within their lives, while personal life and needs become secondary [17]. In this manner, caregivers take the responsibility of providing care for a loved one in need while negotiating newly formed and unfamiliar roles within the relationship and neglecting other aspects of life [17]. ...
... Informal caregivers often place caregiving activities into primary focus within their lives, while personal life and needs become secondary [17]. In this manner, caregivers take the responsibility of providing care for a loved one in need while negotiating newly formed and unfamiliar roles within the relationship and neglecting other aspects of life [17]. ...
... Interestingly, informal caregivers report a loss of self as an outcome of the caregiving role, and as the caregiving role becomes more prominent, informal caregivers require meaning-making in the context of their caregiving identity [17,19]. In line with this situation, the ability to reconcile the discrepancy between self-identity and caregiving identity is detrimental in productive adoption of the caregiving role into the narrative identity of self [20]. ...
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Background: The transformative storytelling technique is an innovative top-down approach to narrative therapy that aims to provide building blocks for creating flourishing narratives for target groups or populations. This approach acts as a facilitator for implementing the human-centered design in developing digital self-help tools for larger samples or target groups. Objective: This study applied the transformative storytelling technique, as a new approach in mental health, to develop empowering audio narratives for informal caregivers.
... Although numerous studies recognize the existing narrative-identity issues within the caregiving role [13][14][15][16], there is no study available that explored the potential of applying or adapting the narrative approach to accommodate shifts in self-identity of informal caregivers. Informal caregivers often place caregiving activities into primary focus within their lives, while personal life and needs become secondary [17]. In this manner, caregivers take the responsibility of providing care for a loved one in need while negotiating newly formed and unfamiliar roles within the relationship and neglecting other aspects of life [17]. ...
... Informal caregivers often place caregiving activities into primary focus within their lives, while personal life and needs become secondary [17]. In this manner, caregivers take the responsibility of providing care for a loved one in need while negotiating newly formed and unfamiliar roles within the relationship and neglecting other aspects of life [17]. ...
... Interestingly, informal caregivers report a loss of self as an outcome of the caregiving role, and as the caregiving role becomes more prominent, informal caregivers require meaning-making in the context of their caregiving identity [17,19]. In line with this situation, the ability to reconcile the discrepancy between self-identity and caregiving identity is detrimental in productive adoption of the caregiving role into the narrative identity of self [20]. ...
Article
Full-text available
Background: The Transformative Storytelling Technique is an innovative top-down approach to narrative therapy that aims to provide building blocks for creating flourishing narratives for target groups or populations. This approach acts as a facilitator for implementing the human-centred design in developing digital self-help tools for larger samples or target groups. Objective: This study applied the Transformative Storytelling technique as a new approach in mental health, to develop empowering audio narratives for informal caregivers. Methods: A narrative inquiry has been conducted with seventeen informal caregivers (16 females and 1 male) who completed a semi-structured interview “Caregiver Life Story” acquiring about the beginning of the role, the rising action, and the critical point of the role. The participants age ranged from 41-84, with all participants providing care for at least six months period. This inquiry was guided by the Transformative Storytelling Technique, and it aimed to collect the data relevant to creating fictional stories based on real-life themes. Results: Twenty-five overall themes have been distinguished across three a-priori set categories, providing narrative building blocks for the informal caregiver life stories. The final empowering caregiver life story was created as an example for this study, demonstrating the application of the Transformative Storytelling Technique in an informal care context. Conclusions: The creation of empowering stories, for populations or target groups in mental health care, requires a unified and guided approach that will follow clear guidelines and storytelling principles. The Transformative Storytelling Technique is a first of its kind in the mental health context and is an initial step in enabling and supporting the creation of meaningful stories and the development of relatable but productive narratives. Such narratives have the potential to serve across media and digital platforms for supporting and improving wellbeing, and potentially triggering self-change in the target group or population.
... Although numerous studies recognize the existing narrative-identity issues within the caregiving role [13][14][15][16], there is no study available that explored the potential of applying or adapting the narrative approach to accommodate shifts in self-identity of informal caregivers. Informal caregivers often place caregiving activities into primary focus within their lives, while personal life and needs become secondary [17]. In this manner, caregivers take the responsibility of providing care for a loved one in need while negotiating newly formed and unfamiliar roles within the relationship and neglecting other aspects of life [17]. ...
... Informal caregivers often place caregiving activities into primary focus within their lives, while personal life and needs become secondary [17]. In this manner, caregivers take the responsibility of providing care for a loved one in need while negotiating newly formed and unfamiliar roles within the relationship and neglecting other aspects of life [17]. ...
... Interestingly, informal caregivers report a loss of self as an outcome of the caregiving role, and as the caregiving role becomes more prominent, informal caregivers require meaning-making in the context of their caregiving identity [17,19]. In line with this situation, the ability to reconcile the discrepancy between self-identity and caregiving identity is detrimental in productive adoption of the caregiving role into the narrative identity of self [20]. ...
Preprint
BACKGROUND The Transformative Storytelling Technique is an innovative top-down approach to narrative therapy that aims to provide building blocks for creating flourishing narratives for target groups or populations. This approach acts as a facilitator for implementing the human-centred design in developing digital self-help tools for larger samples or target groups. OBJECTIVE This study applied the Transformative Storytelling technique as a new approach in mental health, to develop empowering audio narratives for informal caregivers. METHODS A narrative inquiry has been conducted with seventeen informal caregivers who completed a semi-structured interview “Caregiver Life Story” acquiring about the beginning of the role, the rising action, and the critical point of the role. This inquiry was guided by the Transformative Storytelling Technique, and it aimed to collect the data relevant to creating fictional stories based on real-life themes. RESULTS Twenty-five overall themes have been distinguished across three a-priori set categories, providing narrative building blocks for the informal caregiver life stories. The final empowering caregiver life story was created as an example for this study, demonstrating the application of the Transformative Storytelling Technique in an informal care context. CONCLUSIONS The creation of empowering stories, for populations or target groups in mental health care, requires a unified and guided approach that will follow clear guidelines and storytelling principles. Transformative Storytelling Technique is a first of its kind in the mental health context and is an initial step in enabling and supporting the creation of meaningful stories and the development of relatable but productive narratives. Such narratives have the potential to serve across media and digital platforms for supporting and improving wellbeing, and potentially triggering self-change in the target group or population. CLINICALTRIAL No
... The dementia of a loved one leads to fundamental transformations of established interpersonal relations and social roles, driven by the changes of communication and the perceived loss of the person (Albinsson & Strang, 2003;Clemmensen et al., 2019;Hutmacher, 2021;Rudd et al., 1999). In other words, the dementia of a loved one can make it necessary to renegotiate roles within the family system to be able to integrate the new situation and the new responsibilities into one's own identity (Cooper, 2021;Miller-Ott et al., 2022). This may include adapting strategies for communicating love and affection as well as exploring new ways for continuing to have intimate conversations or for sharing daily activities ; see also Hoppe, 2022). ...
... As indicated by the last two themes, the exhibition enabled empowerment in the sense that it created a space for communication and community and that it led to inspirations that extended beyond the immediate context of the exhibition. Given that being confronted with the dementia of a loved one is a disruptive life change (Cooper, 2021;Miller-Ott et al., 2022) and given that dementia is still surrounded by a host of stereotypes and stigmas (Low & Purwaningrum, 2020;Rosato et al., 2019), the creation of platforms for exchange and solidarization is still much needed -especially if they have the potential to lead to long-term changes that open new ways of thinking and behaving. This points to an observation that became apparent across core themes: Although the exhibition was primarily aimed at making a case for the usefulness of engaging in creative activities to deal with the dementia of a loved one, the presentation of the artworks and the related life stories also opened various other new perspectives on dementia. ...
Article
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Dementia poses a huge challenge – not only to the persons living with the condition but also to their family and friends. Recent research has demonstrated that engaging in creative activities can serve as a coping mechanism to deal with the dementia of a loved one. An art exhibition was created to communicate this insight to a broader audience. As indicated by interviews with exhibitors and visitors as well as an analysis of notes that visitors left in the exhibition, the exhibition helped generating important knowledge regarding the usefulness of creative activities, opened new perspectives on dementia, and provided a platform for exchange and solidarity that inspired individuals to think and behave differently. In sum, this suggests that arts-based exhibitions can be a powerful tool for health communication and science communication and for broadening the societal discourse in the context of dementia.
... Relativamente aos achados da necessidade de apoio no impacto do legado de cuidar, como na saúde do cuidador, referem-se aos pós-cuidadores informais pelas taxas mais altas de estresse (27) , depressão (28) e problemas de sono (29)(30) . Do mesmo modo, o cuidado informal perturba o sono de várias formas (30,31) , sendo que as perturbações do sono persistem após a cessação de cuidados. ...
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Objective To examine and synthesize the evidence of experiences and perspectives on the specific context of informal post-care and the existing support network. Method This is a qualitative systematic review with metasynthesis, according to the framework of the JBI, carried out in the CINAHL, LILACS, MEDLINE, BVS and PsycINFO databases, with no time limit. The articles were evaluated using the JBI Qualitative Data Extraction Tool. A total of 1,236 articles was identified, of which 18 were selected and 7 were analyzed. The level of evidence found was moderate. Results The experiences and perspectives of the informal post-caregiver reveal the need for support, namely: in personal development - attribution of meaning, in self-care perspectives and in identity reconstruction; in managing the impact of the legacy of caring - discontinuity of support in the trajectory of caring, financial vulnerability, and the impact on mental health; formal and informal resources for the future - projection of the future, structured services and family and community support. Conclusion Post-caregivers’ perception of their support network is that their individual and interpersonal needs are not identified, and that formal and informal services are not articulated. DESCRIPTORS Caregivers; Life Change Events; Community Networks; Systematic Review
... Regarding the findings on the need for support due to the impact of the legacy of caring, especially on the caregiver's health, informal post-caregivers are referred to as having higher rates of stress (27) , depression (28) , and sleep problems (29)(30) . In the same way, informal care disturbs sleep in various ways (30,31) , with sleep disturbances persisting after care is stopped. ...
Article
Full-text available
Objective To examine and synthesize the evidence of experiences and perspectives on the specific context of informal post-care and the existing support network. Method This is a qualitative systematic review with metasynthesis, according to the framework of the JBI, carried out in the CINAHL, LILACS, MEDLINE, BVS and PsycINFO databases, with no time limit. The articles were evaluated using the JBI Qualitative Data Extraction Tool. A total of 1,236 articles was identified, of which 18 were selected and 7 were analyzed. The level of evidence found was moderate. Results The experiences and perspectives of the informal post-caregiver reveal the need for support, namely: in personal development - attribution of meaning, in self-care perspectives and in identity reconstruction; in managing the impact of the legacy of caring - discontinuity of support in the trajectory of caring, financial vulnerability, and the impact on mental health; formal and informal resources for the future - projection of the future, structured services and family and community support. Conclusion Post-caregivers’ perception of their support network is that their individual and interpersonal needs are not identified, and that formal and informal services are not articulated. DESCRIPTORS Caregivers; Life Change Events; Community Networks; Systematic Review
... Given the high burnout rates in many caregivers of individuals with SEMHCs (Rodríguez-González & Rodríguez-Míguez, 2020), the presence of quality support has been identified as a crucial element in reducing psychological distress (Alyafei et al., 2021;Ntsayagae et al., 2019). Being in caregiving is often intense and round-the-clock, and this results in a loss of the caregiver's sense of self, which may translate into negative caregiver identities and emotional distress (Cooper, 2021). Hence, caregivers must find other purposes besides being caregivers (Applebaum et al., 2022). ...
Article
Accessible Summary What is known about the subject Individuals with severe and enduring mental health challenges continued to consume mental health services for an average of 13 years as they needed multiple acute psychiatric admissions due to the challenges they experienced in their everyday activities. As caregivers of individuals with severe and enduring mental health challenges, they often bear the brunt of caregiving through their assistance with activities of daily living (ADL), providing emotional support and ensuring medication compliance for their loved ones. When caring for their loved ones, caregivers often reported psychological stress, social isolation and emotional exhaustion due to stressors such as uncertainty of the future, the lack of support from professional services and the isolation from their own social network and support mechanism. What the paper adds to existing knowledge Insights from this study revealed that caregivers for individuals with severe and enduring mental health challenges went through a lonely and exhausting journey fraught with psychological, physical, social and financial challenges, echoing the caregiving needs and the prevalence of the caregiver burden. What are the implications for practice Insights shared by the caregivers demonstrated the need for a centralised point of contact to navigate Singapore's fragmented mental healthcare sector. Peer‐support groups should be further promoted because they offer the benefits of information exchange, mutual support and a sense of empowerment and hopefulness, which may help ease the caregiver burden. Life skills training, such as teaching how to communicate empathetically with family members, resolve conflicts using open communication, maintain a structured daily routine and solve pragmatic problems in daily life, is more critical for individuals with severe and enduring mental health challenges. This will help them learn how to manage their well‐being, live independently, and stabilise their conditions. Lastly, public awareness campaigns should honour caregivers by highlighting their strength, resilience, and dedication. The state can provide financial assistance in the form of tax relief for their income per annum or caregiver allowance to alleviate the financial stress that caregivers are facing. Abstract Introduction The progressive deinstitutionalisation of mental healthcare has increasingly shifted care responsibilities from healthcare professionals to family caregivers for individuals with severe mental illness. Caregivers must balance many obligations, which often compromise their overall health and well‐being, while helping their loved ones integrate into the community. Aim To identify and understand caregivers' needs and challenges as they help individuals with severe and enduring mental health challenges integrate into the community. Methods This study used a descriptive qualitative approach to explore the experiences and challenges of caregivers for individuals with severe and enduring mental health challenges when integrating back into the community. A semi‐structured guide was used during the video‐conferencing interviews conducted between December 2021 and November 2022. This study was reported according to the 32‐item Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. Findings Fourteen caregivers were individually interviewed by the primary author. Most caregivers were female, with an average of 15 years of experience caring for their loved ones. Using Braun and Clark's six‐phase thematic framework, we inductively generate the themes and subthemes from the data. The two themes were (i) challenges (whose subthemes included personal challenges in caregiving, the lack of awareness, and stigma and employment) and (ii) support (whose subthemes included the importance of socialisation for individuals with mental health conditions, existing avenues of support and potential areas for support). Discussion Our findings informed the contemporary needs of caregivers caring for individuals with severe and enduring mental health challenges integrating into the community. Like the global challenges for people with mental health issues, psychosocial support and other supplementary support are still common themes in mental health settings. The findings further specifically highlighted the importance of accessible points of contact as resources and employment‐enabling and sustaining initiatives to help manage caregivers' emotional and system challenges, which addresses the gaps identified in the findings. Caregivers' peer‐support groups, life skills training and public mental health awareness are also necessitated by the caregivers' voices. Implications for Practice Priority areas include having a centralised point of contact within the community for caregivers. Government or not‐for‐profit organisations can take the lead by initiating employment‐enabling initiatives for individuals with severe and enduring mental health challenges and their caregivers.
... Further complicating the situation, LTC staff shortages and turnover exacerbated by the COVID-19 pandemic (Coe and Werner, 2022) left many family/care partners 'in the dark' and dissatisfied about their loved one's care and well-being (Harper et al., 2021). Breakdowns in staff-family communication not only introduce logistical hurdles in resident care but may also affect the development of a family/care partner's 'caregiver identity' (Cooper, 2021). For example, if a staff member neglects to inform a deeply involved family/care partner about a minor fall their loved one experienced, it can result in the family/care partner feeling alienated from the care team. ...
Article
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Context: Communication methods have been trialled to promote staff-family relations and facilitate person-centred care for residents living in long-term care homes. A review and synthesis of the common methods will inform the development of staff-family communication methods, policy and best practice guidelines. Objectives: 1) synthesise and summarise common communication methods, and types(s) of delivery, used for staff-family communication in long-term care homes; and 2) identify any challenges that impacted the implementation of the communication method(s). Methods: An integrative review was employed to incorporate papers with diverse research designs. It involved a comprehensive database and grey literature search, and study selection based on inclusion criteria. Data from included studies were extracted, coded and categorised by common communication method, delivery type(s) and challenges; studies were assessed for quality. Findings: A total of 3,183 potential papers were retrieved from seven international databases. Twenty-four original papers from six countries meeting inclusion criteria were reviewed and assessed for quality (M = 30; SD = 3.8). Common communication methods (structured education, meetings and takeaway resources) and challenges to implementation (confusion, misunderstanding and disagreement; lack of time; and technological difficulties) were identified and summarised. Limitations: The exclusion of papers published more than 20 years ago, geographical concentration of studies in high-income countries, and absence of stakeholder consultation may limit the generalisability and depth of the findings. Implications: Staff professional development and education, technology training and support, and accessibility of information in pamphlets and resources for family are crucial for facilitating staff-family communication in long-term care homes.
... Identity construction is a main function of narratives and storytelling (Cooper, 2021;Koenig Kellas & Trees, 2013), which is particularly important process for emerging adults experiencing the onset of AD. Individuals with chronic illness struggle with narrative coherence and identity (Charmaz, 1991;Voorhees, 2022), as the ambiguity, physical threat, and bodily changes that come with chronic illness disrupt their life stories (Charmaz, 2002). ...
Article
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The onset of autoimmune disease (AD) in emerging adulthood is a disruptive illness experience that is difficult to make sense of. Compounded by hegemonic ideologies, including the master illness narrative of restitution and stereotype of the hysterical female patient, women with AD struggle with narrative coherency. Guided by the retrospective storytelling heuristic of communicated narrative sense-making theory (CNSM), the present study investigates the meanings, values, and beliefs found in emerging adult women’s narratives of AD onset and diagnosis. Using qualitative in-depth interviews, findings identify how young women experiencing disruptive chronic illness at a formative age make sense and meaning of their experience, highlighting the role of identity (re)construction and resistance to dominant narratives. Framed as lessons learned, themes include rediscovering trust in self, separating self from illness, creating and committing to new normals, challenging assumptions about illness, and recognizing privilege and disparities in care. Theoretical and practical implications are discussed.
... Furthermore, loved ones can practice enfranchising messages of presence and belief, becoming attuned to needs through explicit inquiry, challenging feelings of burdensomeness, and finding the unique fit with illness in their shared lives. It may also benefit relational others to seek out support resources of their own, especially if they find themselves in a caregiving role (Cooper, 2021). Finally, we encourage community members to critically interrogate disenfranchising ideologies of grief (Willer, 2020) and ableism (Krebs, 2022), which spur further losses for individuals with illness and disability. ...
... Il est enfin utile de relever que le décès du proche aidé marque en fait aussi, de facto, la fin des aides financières, administratives, ménagères, médicales, sociales ou psychologiques et du soutien de structures professionnelles qu'il ou elle pouvait recevoir par son statut d 'aidantproche (e.g., Orzek & Silverman, 2008). La perte de leur proche amorce alors pour eux un double processus : il s'agit à la fois de renoncer à l'identité d'aidant qu'ils peuvent avoir construite avec le temps mais aussi de reconstruire leur identité (i.e., un nouveau projet, de nouvelles relations) (Cadell & Marshall, 2007 ;Cooper, 2021;Orzeck & Silverman, 2008). En effet, l'expérience du « vide post-aidance » (Larkin, 2009(Larkin, , p. 1032) avec ce qu'il comprend comme transitions, changements de routine et perte de liens (i.e. ...
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Que se passe-t-il pour les aidants-proches après le décès de leur proche ? La brève synthèse de littérature réalisée indique que les aidants-proches ayant pu accompagner la fin de vie de leur proche autant qu’ils le souhaitaient sont moins à risque de développer des processus de deuil compliqués. Cependant, ces processus sont, pour chaque personne endeuillée, fondamentalement personnels et changeants et nécessitent donc une approche compréhensive et bienveillante.
... Third, our use of propaganda expands the area's datasets. Historically, family communication scholars have demonstrated openness to novel data sets, including: surveys (e.g., Gettings & McNallie, 2021), interviews (e.g., Barney & Yoshimura, 2021), focus groups (e.g., Koenig Kellas & Suter, 2012), observations (e.g., Elias et al., 2021), online narratives (e.g., Cooper, 2021), national surveys (e.g., Eveland & Nathanson, 2020), experiments (e.g., Odenweller et al., 2020), case studies (e.g., Tan & Liu, 2019), ethnographic materials (e.g., Pangborn, 2019), autoethnographic materials (e.g., Berry & Adams, 2016), and media (e.g., Chattopadhyay, 2019). However, prior to this study, propaganda had not been studied in family communication. ...
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We conducted a relational dialectics analysis of 259 Chinese birth planning policy propaganda. We identified a coalition of five discourses animating the texts. We found the coalition created conditions of monologic wholeness, characterized by simultaneous dialogic expansion and dialogic contraction. Dialogic expansion promised a utopic, future China in exchange for birth parents’ childbirth sacrifices and creation of a generation of superior-quality singleton Chinese children. Dialogic contraction reified superior-quality singletons as irrefutable antecedent for China’s modernization. This study holds both academic and practical significance. Academically, this study accelerates family communication’s critical theoretical turn, highlights complexities of studying monologue, expands the area’s dataset boundaries, and furthers diversity efforts. Practically, this study promises transformation of acontextual Western perspectives on China’s birth planning program. The study’s non-Western perspective is timely, given increasing momentum within the Chinese transnational adoption birth family search and reunion movement.
... Yaşlı bakıcıların bakım sürecinde kimlik değişimlerini konu alan çalışmalar özellikle bağımlılık yaratan bir hastalık sürecinde eş bakımına odaklanmaktadır. Çalışmalarda bakım sürecinde azalan duygusal ve fiziksel yakınlığın (Hayes, Boylstein & Zimmerman, 2009;Boylstein & Hayes, 2012) yanı sıra ilişkilerde karşılıklılık, süreklilik (Riley, Evans & Oyebode, 2018), eş kimliğinin kaybı (Enright, O'Connell, Branger, Kirk & Morgan, 2020) ile eş ve ebeveyn bakıcı kimliğinin inşası (Cooper, 2021) (Küçükgüçlü, Şentürk & Söylemez, 2017;Sözeri-Varma, Oğuzhanoğlu, Atesci, Karagöz & Apa, 2018;Kalınkara & Kalaycı, 2017). Daha çok bakım yükü ile ilişkilenen çalışmalar bakıcı kimliğine ilişkin değişimler hakkında sınırlı bilgi sunmaktadır. ...
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This study evaluates the changing family relationships, roles, and identities of the older family carers who care for their older adult. In the study, caregiving was considered as a process and it was aimed to reveal how the older adult took part in the field of care as caregivers. For this reason, the importance of connected lives, historical and spatial conditions and individual characteristics in undertaking and maintaining care in the context of the life course approach is emphasized. The qualitative research method was used, and in-depth interviews were conducted with 24 older carers within the scope of the study. During the interviews, the biographical life course of the older carers was discussed, and the data obtained were analyzed thematically. The study data are analyzed in the context of various caregiver typologies in the caregiving literature in terms of how older carers experience several care episodes along their care trajectories, how care takes place in the care of spouses and parents, how they define themselves as caregivers due to role conflicts in the care process, and how they think about their own old age. Accordingly, caregiving career of older carers were evaluated under five themes: parenting their parents, like a parent, married widows, on-duty caregivers, and master caregivers. As a result of the research, it was found that this new role that the older adult acquired as caregivers’ conflicts with their other roles as spouse, child, sibling, parent, or employee; It was revealed that the relationships and responsibilities of parents, spouse and siblings change during the care process and these changes occur depending on the intensity, duration, and timing of the caregiving.
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Background Caregivers are people who provide essential care for family members or friends with long-term illnesses or disabilities. A growing body of research has shown that caregivers contemplate suicide at higher-than-average rates, with some also contemplating homicide (killing the person for whom they care) or homicide-suicide. Although anecdotal reports of caregiver-perpetrated homicides abound, the scholarly research has been fragmented and led to unsubstantiated claims (by policy makers and frontline professionals) that these are isolated tragedies that cannot be predicted or prevented. Typologies have been used to guide the study, prediction, and prevention of domestic homicides, but they do not adequately capture the diversity and complexity of caregiver-perpetrated homicides. The aim of this study was to develop a dedicated typology of caregiver-perpetrated homicides that could provide a framework for more rigorous research and facilitate targeted prediction and prevention initiatives. Results Ideal Type Analysis was applied to sixty-four homicides and homicide-suicides perpetrated by caregivers in England and Wales between January 2015 and December 2019. The cases clustered into seven clear Types: Ending Suffering; Genuine Burden of Care; Pre-Existing Mental Illness; Neglect; Exploitation; Caregiver as Victim of Domestic Violence, Abuse or Coercive Control; and, Caregiver as Perpetrator of Domestic Violence, Abuse, or Coercive Control. Each type was characterised by a distinct motive, context, or course of events leading to the homicide. Conclusions This is the first typology of homicides and homicide-suicides perpetrated by caregivers. It challenges claims that these are isolated events and highlights opportunities for prediction and prevention. The Caregiver-Perpetrated Homicide Typology also provides a framework for future research, including an exploration of the social, economic, and political contexts in which these homicides take place, and the development of evidence-based responses across the health, social care, and criminal justice sectors.
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The application of social service robots in organisational contexts may be perceived negatively or positively, shaping varying forms of intra-role identities. Positive perceptions and attitudes are mostly referred to the concept of technophilia, a strong enthusiasm for new technologies. In contrast, negative perceptions are explained by the concept of technophobia, the fear or aversion to technology. There is a limited understanding of how both technophilia and technophobia traits can together cause paradoxical tensions in a role, making opposing sides of the role salient. This study aims to unpack the theoretical grounds of technophilia and technophobia traits by identifying intra-role paradoxical tensions. Identifying these tensions can offer a well-adjusted explanation of how contradictions within a role evolve and persist in times of using technologies. We applied a grounded theory methodology (GTM) to generating and conceptualising data to eventually help the emergence of concepts that shape the technophilia-technophobia spectrum. We identified and conceptualised three intra-role identity paradoxical tensions: (1) caring identity – controlling identity, (2) technology leadership identity – technology followership identity, and (3) autonomous identity – coercive identity. These paradoxical tensions reveal why employees uphold both technophilia-technophobia traits simultaneously when using social service robots. We also articulated the coping strategies that employees maintain to strike a balance between opposing identities.
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Many people want to spend the last stages of their lives at home, in familiar surroundings, and possibly with people they know. However, this increasing desire on the part of older, ill, or even dying people also makes support from other people unavoidable, which in many cases involves family members, loved ones, or even friends. These family caregivers care for the person concerned, even though they lack the professional skills of nursing staff, for example, and have usually not been prepared for this task. This article focuses on the ethical significance of the moral identity of family caregivers. While the effects of this care constellation on the caregivers have often been discussed in the scientific literature, ethical considerations regarding moral identity have so far been neglected. In the first step, the question of what is actually meant by the term moral identity is examined. The second step shifts attention to those people who have taken on the care of a loved one. The relevance of this previously discussed identity is emphasized by using study results and work in this context, and placed in relation to family caregivers. The third step shows that (1) moral identity must be understood as a necessary prerequisite for adequate and humane care, (2) this identity can be enhanced through the caregiving relationship, and (3) the activities undertaken by family caregivers reveal their moral identity. These considerations are finally summarized, provided with ethical aspects, and awareness of this important work of family caregivers is raised.
Article
Informal caregiving is usually deemed stressful and an activity leading to worsening life conditions. Nevertheless, recent studies have suggested the possibility for an informal caregiver to simultaneously experience both positive and negative feelings, identifying in the positive assets the merit of raising resilience and a sense of self-effectiveness. To support informal caregivers and promote their personal well-being, which is crucial also for social well-being, research needs to focus on understanding how they perceive their experiences as caregivers. Based on the theoretical perspectives of caregiving system theory and social representation theory, this research had two aims: first, to compare in terms of caregiving system orientations (especially focusing on deactivation and anxious hyperactivation of the system) people with and without informal caregiving experiences and people who currently are or had been informal caregivers; second, to investigate whether the representations of the salient aspects of caregiving change according to currently being or having been an informal caregiver. The results showed differences in anxiety according to caregiver's experience (current vs. former) and revealed that those caregivers who reported higher scores in anxiety subscale, in comparison to those reporting lower scores in this dimension, tend to devote more attention to the self.
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The present research aims to investigate the relationship between the caregiving burden and its impact on the mental health of caregivers of chronically sick patients. It was hypothesized that the caregiving burden would be positively associated with higher levels of depression, anxiety, and stress among caregivers of chronically sick patients; and caregiving burden would significantly predict the psychological distress (depression, anxiety, stress) in caregivers of chronically sick patients. A sample of 220 caregivers (n=220) was selected conveniently which comprised of 102 males and 118 females selected from the different hospitals. The study employed a correlational research design to collect data, using two standardized scales, the Depression, Anxiety, and Stress Scale-21 (DASS-21) and Zarit Burden Interview. The data were analyzed by using SPSS to investigate the relationship between the caregiving burden and the caregivers' mental health. The findings showed a significant relationship between caregiving burden and increased psychological distress. This implies that higher caregiving burden leads to higher psychological distress. The findings emphasize the importance of proper interventions and support facilities for caregivers. The study adds to the existing knowledge by addressing the impact of the caregiving burden. Additional research is needed to investigate the potential mediator or moderators of the association between the burden and the mental health outcomes, thereby improving our understanding of the intricacies of caregiving experiences.
Article
Communicated Narrative Sense‐Making (CNSM) theory was utilized to consider the characteristics of stories of sibling death 5 years or more after the loss and to investigate the association between sharing these stories and a bereaved sibling's well‐being. Analysis of 174 narratives revealed that a neutral affective tone was predominant in storytelling and that participant overall mood emerged as a more significant predictor of well‐being than the affective content of the story. Cause of death, age at death, short‐ and long‐term impacts, and continuing bonds with sibling were the main themes included in sibling death stories, with an emphasis on factual content. The participants' reported salience of six CNSM perspective‐taking behaviors of listeners while telling the death story to others suggests that while all six behaviors were important to their decision to share their story, being offered the freedom to tell the story and having positive, attentive behaviors from listeners were the most salient. Based on these findings, contributions to CNSM translational interventions for bereaved siblings are discussed.
Chapter
This chapter first presents a brief overview of the cultural history of doping and the changing perspectives of this phenomenon in contemporary society, particularly in the digital age of the twenty-first century. This overview positions the book historically and culturally. Second, we introduce our analytical perspectives, including how we understand bodies, identities, and cultural communities in the spatiality of online doping. Situated within the realm of digital sociology, this chapter concludes with a discussion of how we can approach and understand online doping both discursively and as a lived experience. Further, we argue that the lines often drawn in public discourse and in research between online/offline, real/fantasy, and physical/digital are flawed, which we then develop in the remainder of the book.
Article
Mild traumatic brain injury (mTBI), with symptoms beyond 3 months, may be more common than previously believed, but is poorly understood. This has resulted in contradictory and confused information for service users, which has had an impact on those with mTBI and their families. This qualitative study aimed to improve understanding of the lived experiences of families of people with mTBI, with symptoms beyond 3 months. It extends a previous study, which focussed on all degrees of traumatic brain injury (TBI) (mild, moderate, and severe). Four individuals participated in semi-structured, virtual interviews. Following an interpretative phenomenological analysis (IPA), three superordinate themes were identified: (1) Going round in circles, (2) The second secondary impact, and (3) Dialogue with myself. Findings indicate that families of people with mTBI, with symptoms beyond 3 months, may experience many of the same challenges as families of people with moderate or severe TBI, albeit at a lesser intensity. This includes difficulty making sense of TBI and challenges to their identity, both of which mirror the comparator TBI study findings. However, findings also indicated that this group may experience different challenges to families of people with moderate or severe TBI, aspects of which have not previously been reported. Feelings of ambiguous loss may be increased by incongruity between information provided and families’ experiences, and by the varied availability and content of information. Implications for service providers are that consistent, transparent, and realistic information and education may aid adjustment and assist families to support people with mTBI.
Article
More than 11 million Americans provide unpaid care for people with dementia (PWD) and need emotional, financial, and physical support. This study explored how participants in Caregiver Speaks, a social networking and image-based storytelling intervention designed to help caregivers make meaning of caregiving, described their caregiving experiences and needs. Strategies of thematic analysis were used to identify patterns in 28 different caregivers' images (N = 59) and text interactions on social media. Caregivers identified as white (71.4%), as women (92.9%), and as an adult child or child-in-law of the PWD (85.7%). Through images and text, caregivers explained interrelated changes in their behaviors (e.g., managing dual roles), thoughts (e.g., realizing severity of illness), and feelings (e.g., trapped) throughout the caregiving process. Findings reiterate that caregiving changes significantly over time, that visual storytelling helps to concretely capture those changes, and that interventions are needed to respond to caregivers' hardships across the caregiving time span.
Article
This qualitative study explored how working mothers communicatively constructed resilience during COVID-19. We focused on working mothers because the pandemic upended arrangements they had made previously to juggle work and family lives. Drawing on the Communication Theory of Resilience (CTR), the study analyzed data collected from 24 U.S. working mothers who were interviewed via Zoom between July and September 2020. We found five themes characterizing the triggers working mothers faced in the pandemic: financial disruptions, on-the-job issues, space-related concerns, temporal concerns, and role-related issues. Consistent with CTR, mothers responded to these disruptions by crafting resilience with the six processes suggested by previous research. Further, we found a seventh process, “communicating emotional well-being,” that mothers crafted to recalibrate emotional upsets due to the pandemic. The findings also suggested that working mothers saw their own resilience as inextricably tied to the resilience of their children and partners.
Article
Doubt is a common, yet challenging form of uncertainty to have about another’s illness. Although navigating illness uncertainty is a process of continual (re)appraisal and management, existing research narrowly examines windows of uncertainty experience. To illustrate how uncertainty management in the context of doubt is recursive, nonlinear, and ongoing, we apply a process approach to communication to uncertainty management theory. Drawing on interviews with 33 U.S. adults, our findings explicate a prominently teleological (i.e., goal-driven) process wherein participants’ uncertainty management served to accept or deny illness, depending on the extent individuals valued their own and the other’s identity and the relationship. Participants generally moved through this process along one of three trajectories: growth, stagnation, or resentment. We also observed dialectical, evolutionary, and life cycle processes in the data. Findings demonstrate the heuristic value of studying uncertainty management as a multiple motor process.
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With approximately 20 % of pregnancies ending in loss, miscarriage is a relatively common and stressful occurrence. Because romantic partners’ coping efforts are intimately connected, the way one partner copes with the other’s miscarriage has important implications for individual and relational well-being. Grounded in the communicated sense-making (CSM) model, the current study investigated how cis-gender men in heterosexual marriages (n = 45) communicatively constructed the meaning of their wife’s miscarriage through metaphors. Analysis of interview data revealed two supra-themes—metaphors of miscarriage and metaphors of men’s role as a husband. Metaphors of lost gift, cataclysm, death of a loved one, emptiness, and chaotic movement animated husbands’ CSM about their wife’s miscarriage. Men drew upon discourses of masculinity to make sense of their role as a husband in the miscarriage process as a rock, guard, repair man, and secondary character. We explore these findings in light of the master narrative of birth and propose an expansion of the CSM model to include metaphors as a key CSM device.
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We aimed to determine the types of identities hearing parents construct when telling online stories about their children with hearing loss (HL) who use cochlear implants (CIs). To do so, we employed a qualitative design and sampled 20 different blogs United States origins and written by parents of children who use CIs. We then used thematic narrative analysis (Braun & Clarke, 2006; Riessman, C. K. (2008). Narrative methods for the human sciences. Thousand Oaks, CA: Sage Publications.) to uncover recurring themes from these parents' blogs. The themes then allowed us to assign identities to the parents. Four identities emerged in the parents' stories: (1) advocates, (2) resilient parents, (3) obedient worriers, and (4) matter-of-fact narrators. Identifying and understanding these parent identities is a first step toward improving theoretical and clinical insights into parents' perspectives and experiences following their children's diagnosis of HL. Such insights could ultimately improve audiologists' abilities to help families seek out, implement, and follow-through with family-centered hearing healthcare.
Book
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How does caregiving affect health and well-being and what resources help caregivers? This book provides a synthesis of psychological research on caregiver stress and brings attention to the personal, social and structural factors that affect caregivers' well-being and as well as recent behavioral interventions to enhance health. © Tracey A. Revenson, Konstadina Griva, Aleksandra Luszczynska, Val Morrison, Efharis Panagopoulou, Noa Vilchinsky and Mariët Hagedoorn 2016.
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The present research sought to identify a novel factor that reduces the emotional impact of relationship dissolution. Specifically, we examined individuals’ use of redemptive narratives—a form of narrative focused on positive outcomes in negative situations—in post-dissolution journal entries written over the course of a 4-day diary study. An interaction emerged, that is, individuals reported reduced emotional distress to the extent that they had used more, versus fewer, redemptive narratives the day before (a lagged effect), but only at the end, not the beginning, of the study. This effect was independent from similar effects predicted by greater cognitive processing. These findings suggest that redemptive narratives may reduce individuals’ post-dissolution distress.
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This article presents 2 longitudinal studies designed to assess the relationship between variability in narrative identity and trajectories of mental health over several years. In Study 1, core scenes from 89 late-mid-life adults' life stories were assessed for several narrative themes. Participants' mental health and physical health were assessed concurrently with the narratives and annually for the subsequent 4 years. Concurrent analyses indicated that the themes of agency, redemption, and contamination were significantly associated with mental health. Longitudinal analyses indicated that these same 3 themes were significantly associated with participants' trajectories of mental health over the course of 4 years. Exploratory analyses indicated that narratives of challenging experiences may be central to this pattern of results. In Study 2, similar longitudinal analyses were conducted on a sample of 27 late-mid-life adults who received a major physical illness diagnosis between the baseline assessment and 6 months later and a matched sample of 27 control participants who remained healthy throughout the study. Participants' mental health and physical health were assessed every 6 months for 2 years. In this study, the themes of agency, communion, redemption, and contamination in participants' life narratives collected at baseline (before any participant became sick) were significantly associated with mental health in the group of participants who went on to receive a medical diagnosis, but not in the control group. Taken together, the results of these 2 studies indicate that the way an individual constructs personal narratives may impact his or her trajectory of mental health over time. (PsycINFO Database Record (c) 2015 APA, all rights reserved).
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The present study is a thematic narrative analysis (Riessman, 200817. Riessman, C. K. (2008). Narrative methods for the human sciences. Thousand Oaks, CA: Sage Publications.View all references) of 17 former foster children's online stories. The author explores the question, “What identities are constructed in narrative tellings about one's foster child experience?” Three pervasive, non-exclusive identities emerged from the former foster children's narratives: victim, survivor, and victor. These identity constructions are discussed in relation to redemptive tellings, wellbeing, and the foster care system.
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Background: Although caregivers of people with dementia may face difficulties, there might be positive emotional responses that would be associated to the capacity of resilience. Objective: We systematically review the conceptualizations, methodological approaches and the determinant models related to resilience in caregivers of people with dementia. Methods: Search of articles, published between 2003 and 2014, on ISI, PubMed/Medline, SciELO and Lilacs using the keywords “resilience” and “caregivers” and “dementia”. Results and conclusion: Resilience was conceptualized as a positive adaptation to face adversity, flexibility, psychological well-being, strength, healthy life, burden, social network and satisfaction with social support. There was a lack of consensus about the meaning of the construct of resilience in dementia. We categorized the determinant variables in biological, psychological or social models. Studies reported that higher levels of resilience were associated to lower depression rates and greater physical health. Other biological aspects associated to higher levels of resilience were older age, African-American ethnicity and female gender. Decreased burden, stress, neuroticism and perceived control were the main psychological aspects associated to resilience. Social support is a moderator factor of resilience, as varied types of support might relatively relief the physical and mental overload caused by stress.
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Framed by relational dialectics theory, discursive constructions of the meaning of “family” were examined in 100 online foster adoption narratives. Parental narratives manifested struggles between biogenetic and discursive constructions of “family,” identified here as the discourse of biological normativity (DBN) and discourse of constitutive kinning (DCK). The DBN reinscribes the dominant cultural and foster care system preference for biogenetically connected families. The DCK resists the DBN, maintaining that enacted behaviors and shared affections, rather than shared genetics, constitute legitimate families. Contrapuntal analysis revealed a high degree of polemic interplay; both discourses competed to be centered rather than marginalized through the discursive practices of negating, countering, and entertaining. Implications for theorizing definitions of family and studying families in context are discussed
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The overarching goal of the current study was to determine the impact of talking interpersonally over time on emerging adults' individual and relational health. Using an expressive writing study design (see Frattaroli, 2006), we assessed the degree to which psychological health improved over time for college students who told and listened to stories about friends' current difficulties in comparison with tellers in control conditions. We also investigated the effects on tellers' and listeners' perceptions of each other's communication competence, communicated perspective-taking, and the degree to which each threatened the other's face during the interaction over time to better understand the interpersonal communication complexities associated with talking about difficulty over time. After completing prestudy questionnaires, 49 friend pairs engaged in three interpersonal interactions over the course of 1 week wherein one talked about and one listened to a story of difficulty (treatment) or daily events (control). All participants completed a poststudy questionnaire 3 weeks later. Tellers' negative affect decreased over time for participants exposed to the treatment group, although life satisfaction increased and positive affect decreased across time for participants regardless of condition. Perceptions of friends' communication abilities decreased significantly over time for tellers. The current study contributes to the literature on expressive writing and social support by shedding light on the interpersonal implications of talking about difficulty, the often-overlooked effects of disclosure on listeners, and the health effects of talking about problems on college students' health.
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Abstract This paper explores behavioral constructs derived from the Integrative Model of Behavioral Prediction (Fishbein 2009) that emerged from unsolicited, online stories from 30 mothers about their experiences with postpartum depression. Five constructs (i.e., social norms; severity; barriers to help-seeking; facilitators to, and cues to action for, help-seeking; and self-efficacy) were prevalent and were connected with help-seeking behaviors in the stories that were analyzed after a single data collection in March, 2011. Recommendations are offered for how the findings can be integrated into postpartum depression-related health promotion interventions.
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Thematic analysis is a poorly demarcated, rarely acknowledged, yet widely used qualitative analytic method within psychology. In this paper, we argue that it offers an accessible and theoretically flexible approach to analysing qualitative data. We outline what thematic analysis is, locating it in relation to other qualitative analytic methods that search for themes or patterns, and in relation to different epistemological and ontological positions. We then provide clear guidelines to those wanting to start thematic analysis, or conduct it in a more deliberate and rigorous way, and consider potential pitfalls in conducting thematic analysis. Finally, we outline the disadvantages and advantages of thematic analysis. We conclude by advocating thematic analysis as a useful and flexible method for qualitative research in and beyond psychology.
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Using data from a national sample of informal caregivers to older adults, we identify predictors of lack of choice and the consequences of lack of choice in taking on the caregiving role. A national telephone survey with 1397 caregivers was carried out to assess whether respondents had a choice in taking on the caregiving role, their demographic characteristics, the nature and duration of their caregiving experience, and its impact on their physical and psychological well-being. We compare caregivers who felt they had no choice in taking on the caregiving role to those who did. In total, 44% of caregivers reported a lack of choice in taking on the caregiving role. Highly educated, older caregivers caring for a younger care recipient with emotional or behavioral problems were most likely to report that they had no choice in taking on the caregiving role. Lack of choice is associated with higher levels of emotional stress, physical strain, and negative health impacts, after controlling for multiple confounds including level of care provided, relationship type, primary health condition of the care recipient, and demographic characteristics. Lack of choice is an independent risk factor for the negative effects of caregiving, and clinicians should be vigilant to lack of choice as a marker of caregiver distress.
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We examined the effects of a manualized care management protocol specifically designed for care managers working with caregivers, the Tailored Caregiver Assessment and Referral® (TCARE®) protocol, on caregiver identity discrepancy, burden, and depressive symptoms. Preliminary data from a longitudinal, randomized, controlled intervention study with 266 family caregivers served by 52 care managers in 4 states were analyzed using repeated measures random effects regression procedures. Caregivers in the intervention and control groups were repeatedly assessed for up to 9 months on caregiver identity discrepancy, 3 areas of caregiving burden-objective, relationship, and stress burdens; depression; and intention for nursing home placement. We found significant group by time interaction effects for caregiver identity discrepancy, relationship burden, stress burden, depression, and intention for nursing home placement. Caregivers in the intervention group experienced significant improvement on these measures, whereas caregivers in the control group worsened on these measures over time. The preliminary findings provide strong support for effectiveness of the TCARE® protocol on improving caregiver well-being and mental health outcomes.
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Items from the California Adult Q-Sort (CAQ) were used to assess psychosocial generativity (E. H. Erikson, 1950) in a sample of educated women at midlife. CAQ scores measured at age 43 demonstrated convergent validity with an inventory measure of generativity assessed at age 53. According to other longitudinal analyses, women who attained a generative stance at age 43 reported greater investment 10 years later in intergenerational roles (e.g., daughter, mother) but not nonintergenerational ones (e.g., friend, sister). Generative women also reported less subjective burden in caring for aging parents and more knowledge about community elder care programs. Further evidence suggests that participants felt embedded in a reciprocal caregiving network in which they themselves were the recipients of care.
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Providing care for a frail older adult has been described as a stressful experience that may erode psychological well-being and physical health of caregivers. In this meta-analysis, the authors integrated findings from 84 articles on differences between caregivers and noncaregivers in perceived stress, depression, general subjective well-being, physical health, and self-efficacy. The largest differences were found with regard to depression (g = .58), stress (g = .55), self-efficacy (g = .54), and general subjective well-being (g = -.40). Differences in the levels of physical health in favor of noncaregivers were statistically significant, but small (g = .18). However, larger differences were found between dementia caregivers and noncaregivers than between heterogeneous samples of caregivers and noncaregivers. Differences were also influenced by the quality of the study, relationship of caregiver to the care recipient, gender, and mean age of caregivers.
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This article is focused on the growing empirical emphasis on connections between narrative and self-development. The authors propose a process model of self-development in which storytelling is at the heart of both stability and change in the self. Specifically, we focus on how situated stories help develop and maintain the self with reciprocal impacts on enduring aspects of self, specifically self-concept and the life story. This article emphasizes the research that has shown how autobiographical stories affect the self and provides a direction for future work to maximize the potential of narrative approaches to studying processes of self-development.
Book
Family Caregiving in the New Normal discusses how the drastic economic changes that have occurred over the past few years have precipitated a new conversation on how family care for older adults will evolve in the future. This text summarizes the challenges and potential solutions scientists, policy makers, and clinical providers must address as they grapple with these changes, with a primary focus given to the elements that may impact how family caregiving is organized and addressed in subsequent decades, including sociodemographic trends like divorce, increased participation of women in the workforce, geographic mobility, fewer children in post-baby boom families, chronic illness trends, economic stressors, and the current policy environment. A section on the support of caregivers includes technology-based solutions that examine existing models, personal health records, and mobile applications, big data issues, decision-making support, person-centered approaches, crowd-sourced caregiving such as blogs and personal websites that have galvanized caregivers, and new methods to combine paid and unpaid forms of care.
Article
Objectives: This study explores the intersection of marriage and caregiving amongst older spousal caregivers in regional Australia. Specifically, we address the research question: 'How do expectations of informal care impact spousal caregivers in later life?' Methods: These comprise interpretive qualitative in-depth interviews in order to understand the lived experience of caregiving within the context of long-term marriage. Results: Findings highlight the complexity and diversity of marital relationships as the context of informal care. Individual and social obligations were evident in key themes, demonstrating how spouses automatically assume and continue in caregiver roles in later life. Conclusion: Caregiving is an expectation of couples in long-term marriages, regardless of the relationship quality and willingness to care. Normative expectations also impact decision-making around future care planning and transitions away from home-based care. These are important considerations for both policy and practice with older adults and their caregivers.
Book
The now-classic Metaphors We Live By changed our understanding of metaphor and its role in language and the mind. Metaphor, the authors explain, is a fundamental mechanism of mind, one that allows us to use what we know about our physical and social experience to provide understanding of countless other subjects. Because such metaphors structure our most basic understandings of our experience, they are "metaphors we live by"--metaphors that can shape our perceptions and actions without our ever noticing them. In this updated edition of Lakoff and Johnson's influential book, the authors supply an afterword surveying how their theory of metaphor has developed within the cognitive sciences to become central to the contemporary understanding of how we think and how we express our thoughts in language.
Article
How does caregiving affect health and well-being and what resources help caregivers? This book provides a synthesis of psychological research on caregiver stress and brings attention to the personal, social and structural factors that affect caregivers' well-being and as well as recent behavioral interventions to enhance health.
Chapter
Caregiving at the end of the life cycle is now widely recognized as a normal role in later life for most women and many men. The caregiving role, however, is not uniformly embraced by all potential caregivers, nor is it experienced in the same manner by those who assume the role. Indeed, a large number of studies conducted over the two past decades have documented differential impacts of caregiving on caregivers’ lives (Anhensel, Pearlin, Mulan, Zarit, & Whitlach, 1995; Farran, Miller, Kaufman, & Davis, 1997). Despite early questions about the utility of research on caregiving and its corresponding costs (Zarit, 1989), the experience of caregiving has been designated by The National Institute on Aging as one of the top priorities for social and behavioral research. Caregiving has also moved on to center stage in the policy arena. Where in the past, the presence of a family caregiver was often the basis for denial of public services, the introduction of the National Family Caregiver Support Program (NFCSP) as Title III-E of the Older American’s Act in 2000 legitimized family caregivers as a group with needs deserving of assistance. Since the initial implementation of the NFCSP in 2000, there has been an explosion of newly developed family support programs at both the state and local levels.
Chapter
This concluding Chapter speculates on the future of caregiving. We can be sure that it will not be a simple extrapolation of the past and present. Strong demographic, health, policy, and economic trends may (or may not) converge to influence how and whether family caregiving will continue in the United States. The personal narratives presented in the initial section of this book emphasize that these changes are likely to resonate with families who carry out the day-to-day care of older persons with health needs. Looking forward to the next several decades, caregiving may be facing the perfect storm. The collision of demography and economics catalyzed by a polarized political atmosphere may place greater pressures on caregivers. While this impending challenge is formidable, Family Caregiving in the New Normal outlines some possible solutions and other emerging forces that may help sustain family caregivers in the future.
Article
This research looks at the way that stories were shared online following the magnitude 7.1 and 6.3 earthquakes that hit Canterbury, New Zealand in September 2010 and February 2011. The earthquakes left the city of Christchurch with massive structural, infrastructural and emotional damage as well as leading to 185 deaths. The ground movement was the highest ever recorded to have hit a major city. Four years on, the city is beginning to recover. This research looks at the way in which technology was used as one tool to promote community resilience amongst those affected by the earthquakes and reflects the growing awareness of the contribution that consumer behaviour research can make to disaster research and studies of resilience. Several online tools, social media and online communities, were used by residents in order to cope with the ordeal. We demonstrate that the Internet not only provided a major source of practical information, but also may have facilitated an emotional bond to others in the city and beyond thereby contributing to increased personal and community resilience. We show that the need to share and express one's self following a major crisis event was clearly evident with the volumes of stories submitted, especially when physical travel was impractical or restricted by the authorities. The implications for theories of catharsis and the use of online media during crises are discussed. Policy recommendations regarding the use of online media are also provided as an aid in the victims' emotional recovery from a major crisis.
Article
This paper presents a broad overview of the expressive writing paradigm. Since its first use in the 1980s, dozens of studies have explored the parameters and boundary conditions of its effectiveness. In the laboratory, consistent and significant health improvements are found when individuals write or talk about personally upsetting experiences. The effects include both subjective and objective markers of health and well-being. The disclosure phenomenon appears to generalize across settings, many individual difference factors, and several Western cultures, and is independent of social feedback.
Article
Drawing from the author's psychological research on especially generative (that is, caring and productive) midlife American adults and on a reading of American cultural history and literature, this book identifies a prototypical story of the good life that many Americans employ to make sense of who they are, who they have been, and who they will be in the future. The central theme in this story is redemption - the deliverance from suffering to a positive status or outcome. Empirical research suggests that highly generative American adults are much more likely than their less generative counterparts to construe their lives as tales of redemption. Redemptive life stories promote psychological well-being, physical health, and the adult's commitment to making a positive contribution to society. But stories of redemption are as much cultural texts as they are individual psychological constructions. From the spiritual autobiographies composed by the Massachusetts Bay Puritans to the most recent episodes of the Oprah Winfrey Show, common scripts for the redemptive self may be found in religious accounts of conversion and atonement, the rags-to-riches stories of the American dream, and canonical cultural narratives about personal liberation, freedom, and recovery. The book examines the psychological and cultural dynamics of redemptive life narratives, including the role of American religion and self-help as sources for the construction of life stories and the broad similarities, as well as the striking differences in how African-American and Euro-American adults construct redemptive stories of the self. For all their psychological and cultural power, redemptive life stories sometimes reveal important limitations in American identity. For example, some versions of the redemptive self underscore the naïve expectation that suffering will always be overcome and the arrogance of seeing one's own life as the living out of a personal manifest destiny.
Article
Background: Despite the multitude of available resources, family caregivers of those with chronic disease continually underutilize support services to cope with the demands of caregiving. Several studies have linked self-identification as a caregiver to the increased likelihood of support service use. Purpose: The present study reviewed the literature related to the development of family caregiver identity. Methods: After a systematic process to locate literature was completed, content analysis was conducted to determine major themes related to the development of caregiving identity. Results: Findings suggest that there are multiple factors related to the development of family caregiver identity, including role engulfment and reversal, loss of shared identity, family obligation and gender norming, extension of the former role, and development of a master identity. Discussion: Considering the role of identity in human behavior, health professionals can address the underutilization of support services by family caregivers of those with chronic disease by understanding the influences on the development of caregiver identity. Translation to Health Education Practice: This literature review will assist health educators in addressing the underutilization of support services by family caregivers of those with chronic disease.
Book
"Who am I?" "How do I fit in the world around me?" This revealing and innovative book demonstrates that each of us discovers what is true and meaningful, in our lives and in ourselves, through the creation of personal myths. Challenging the traditional view that our personalities are formed by fixed, unchanging characteristics, or by predictable stages through which every individual travels, The Stories We Live By persuasively argues that we are the stories we tell. Informed by extensive scientific research--yet highly readable, engaging, and accessible--the book explores how understanding and revising our personal stories can open up new possibilities for our lives.
Article
This research traced the process of caregiver selection among adult children longitudinally, investigating how transitions to parent care were influenced by previous constellations of caregiving costs and commitments within sibling groups. The authors used data from 6 waves (1998–2008) of the Health and Retirement Study, selecting a sample of families (N = 641 parents comprising N = 2,452 parent–child dyads) in which they observed at least 1 adult child becoming a caregiver to a previously self-sufficient parent. Among cost-related factors, this transition was predicted primarily by between-sibling differences in previous geographical distances to the parent and, to a lesser extent, competing demands in work and family spheres. The indicators for caregiving commitments showed the importance of reciprocity, path dependency, and parental expectations as motivational forces affecting the process of caregiver selection among adult children. Gender effects revealed the primacy of the mother–daughter tie, as daughters were overrepresented only in transitions to mother care.
Article
This study examined whether expressive writing could help lesbian, gay, bisexual, or queer (LGBQ) hate speech victims increase forgiveness for offenders, and accelerate cortisol recovery following a discussion task in which they recalled the details of their experiences. Participants (N = 46) were assigned to a benefit-finding, traumatic disclosure writing, or control condition. The findings indicate that benefit-finding promoted forgiveness and reduced cortisol values, whereas traumatic disclosure writing only accelerated cortisol recovery. Analyses of the linguistic features of victims' narratives revealed that the amount of emotion-related words related to cortisol recovery, whereas the greater use of cognitive words was related with forgiveness. Implications for theory, methodological comparison, and future research are discussed.
Article
Because of expanding life spans and the increasingly chronic nature of disease, caregiving is becoming a dominant activity in today's society. Caregiving for elderly parents has been identified as a complex activity involving the balancing of many tasks and roles, and an activity that has the potential for both intense stress and for psychological and relational rewards. In this study, we consider the complexity of caregiving by examining the identity and identification processes of family caregivers. Taking a structurational approach to identity and identification, we examine in-depth interviews with 11 caregivers of elderly parents. The narratives and comments provided by these caregivers led us to the consideration of two major structures influencing the identity of family caregivers: structures of parenting and structures of competence. We explore the nature of these structures in terms of the ways they are adapted and transformed in the identification of caregivers and the way they influence rewards and stresses in the caregiving role. Our analyses point to complex adaptations of these private (family) and public (competence) structures, and to both functional and dysfunctional transformations of these structures in the caregiving role.
Article
Human resilience is the ability to " bounce back" or reintegrate after difficult life experiences. I argue that, rather than an individual phenomenon that someone either possesses or does not, resilience is developed, sustained, and grown through discourse, interaction, and material considerations. There are several communicative processes involved. These include: (a) crafting normalcy, (b) affirming identity anchors, (c) maintaining and using communication networks, (d) putting alternative logics to work, and (e) downplaying negative feelings while foregrounding positive emotions, such as hopefulness and self-efficacy. Commentary on how the field of communication as a whole and through specific disciplinary areas can contribute to scholarship on and practice in resilience concludes this Address, which serves as an initial exploration into human communication resilience processes.
Article
In this paper, we examine how Alzheimer's disease and related disorders (ADRD) affect caregivers' perceptions of change in the identity of their afflicted spouse and the ways in which accompanying changes in caregiver identity influence intimate relations. We also explore how gender shapes the ADRD caregiving experience among married couples, specifically, the extent to which intimate relations are also gendered relations. The study group was comprised of spousal caregivers recruited from support groups in the two Midwestern states and from the Alzheimer's Disease Center (ADC) at a large Midwestern university hospital. In-depth interviews were conducted with 13 men and 15 women whose spouses had ADRD. The intensive interviews confirmed that identity change on the part of sick spouses had important implications for intimacy, although not always in adverse ways. The majority of caregiver husbands and wives reported diminished intimacy as a result of the ADRD. Many men and women believed they would retain feelings of closeness to their afflicted spouses as long as they were alive. Wives were more likely than husbands to report that changes in their spouses' identity altered how they identified themselves within their marriage. This has important implications for intimate relations between people with ADRD and those who care for them. Our findings suggest that caregiving and intimacy are very different experiences for men and women, and point to the need for caregiver education and support.
Article
The now-classic Metaphors We Live By changed our understanding of metaphor and its role in language and the mind. Metaphor, the authors explain, is a fundamental mechanism of mind, one that allows us to use what we know about our physical and social experience to provide understanding of countless other subjects. Because such metaphors structure our most basic understandings of our experience, they are "metaphors we live by"—metaphors that can shape our perceptions and actions without our ever noticing them. In this updated edition of Lakoff and Johnson's influential book, the authors supply an afterword surveying how their theory of metaphor has developed within the cognitive sciences to become central to the contemporary understanding of how we think and how we express our thoughts in language.
Article
"Loss of self" was examined in a sample of spouses and adult children caring for a relative with Alzheimer's disease. Defined as a loss of identity that comes about as a result of engulfment in the caregiver role, it was found to be more common among spouses, females, and younger caregivers. Limited social contact and lack of social roles outside that of caregiver were found to be related to greater loss of self. It is associated with lower self-esteem and mastery and with greater depressive symptomatology.
Article
Family caregivers of relatives with dementia report higher level of psychological distress than other caregivers and report their self-related health as poorer than that of comparison groups. The purpose of the study was to examine characteristics of family caregivers and to assess whether income, subjective health, age and relationship were associated with the burden of care they experienced. Group living units in southern Sweden. Fifty caregivers who served as informal caregivers of relatives with dementia in group living care. Interviews regarding economic and social conditions and well-evaluated scales for health and caregiver burden (CB) were used. The majority of the family caregivers were adult children, and twice as many were female than were males. The investigation showed that total burden, strain and disappointment, adjusted for health and age, were related to income. Disappointment showed a relation to subjective health. The adult children showed a significantly higher degree of total burden, irrespective of age, compared to other family caregivers. Low income was associated with a higher degree of burden among adult children. However, elderly participants experienced less of burden than younger ones. Our findings indicate that caregivers with low health profile and low income, especially adult children, are associated with higher CB. People with coexisting risk factors (low income, low perceived health) are the ones who may benefit most from health-oriented interventions.
Aging baby boomers to face caregiving, obesity, inequality challenges
  • M Mather
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  • K M Pollard
Mather, M., Jacobsen, L. A., & Pollard, K. M. (2016). Aging baby boomers to face caregiving, obesity, inequality challenges. Population Reference Bureau. https://www.prb.org/unitedstates-population-bulletin/#:~:text=The% 20aging%20of%20the%20baby,projects%20in%20a%20new%20report
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Communication theory of resilience: Enacting adaptive-transformative processes when families experience loss and disruption
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Buzzanell, P. M. (2018). Communication theory of resilience: Enacting adaptive-transformative processes when families experience loss and disruption. In D. O. Braithwaite, E. A. Suter, & K. Floyd (Eds.), Engaging theories in family communication (pp. 98-109). Routledge.
Narrative methods for human sciences. Sage
  • C K Riessman
Finding the silver lining: The relative roles of redemptive narratives and cognitive reappraisal in individuals' emotional distress after the end of a romantic relationship
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Slotter, E. B., & Ward, D. E. (2015). Finding the silver lining: The relative roles of redemptive narratives and cognitive reappraisal in individuals' emotional distress after the end of a romantic relationship. The Journal Social and Personal Relationships, 32(6), 737-756. https://doi.org/10.1177/0265407514546978