The effectiveness of caregiver social support is associated with cancer survivors' memories of stem cell transplantation: A linguistic analysis of survivor narratives

Rini, Christine; Emmerling, Dane; Austin, Jane E.; Wu, Lisa M.; Valdimarsdottir, Heiðdís; Redd, William H.; Woodruff, Rebecca C.; Warbet, Rachel

doi:10.1017/s1478951515000681

Cited by 6 publications

(3 citation statements)

References 36 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Some studies have shown that ICs' social support varies in quality or effectiveness [6], but this may be a coping response that helps ease the emotional and practical burden of the cancer disease experience [7]. However, ICs' interventions do differ because they have individual differences in skills, motivation, and ability to overcome the difficult situations associated with cancer care [8], and different authors who have considered caregiving a full-time job that imposes a significant burden of responsibility [2,7,9,10] have investigated the high cost of informal care [11] and the need to involve these caregivers in the healthcare team from the moment of diagnosis [5,12].…”

Section: Introductionmentioning

confidence: 99%

The power of informal cancer caregivers’ writings: results from a thematic and narrative analysis

Suter

Ardizzone

Giarelli

et al. 2021

Support Care Cancer

View full text Add to dashboard Cite

Background Cancer is a disease that disrupts not only the patient’s life, but that of the entire family as well, from a care, organizational, and emotional perspective. Patients share their experience of illness frequently with their informal caregiver (IC), a partner, son/daughter, friend, volunteer, or any other person in the family or social network who offers to support them during their clinical journey. The purpose of this study was to investigate ICs’ still unknown cancer experiences through the stories of IC participants in a Literary Artistic Competition the Centro di Riferimento Oncologico di Aviano (CRO) IRCSS organized, and understand the themes that emerged from their texts and hence, the power of expressive writing. Materials and methods A qualitative study was carried out on literary texts using Mishler’s three levels of narrative analysis: thematic (to detect themes and subthemes); structural (to support the thematic level), and performative (to understand the narratives’ meaning). In addition, the narratives were classified based on Kleinman and Frank’s models. A particular focus was placed on the language of the narratives to identify figures of speech, e.g., metaphors related to cancer. Results Seven main themes emerged from the 40 stories’ thematic analysis: perceptions of the disease; biographical breakdown; relationships; transformation of the sick body; IC’s role; encounter with death; and strength of memory. The ICs’ stories also highlighted the strengths and weaknesses of the patient’s clinical pathway. ICs are a resource not only for the patient, who, thanks to them, is assured of continuous assistance but also for the healthcare organization, above all because they serve a relational role as a “bridge” between patients and healthcare workers. ICs have important messages to offer to healthcare organizations. If involved adequately, they can provide a strategic strength in supporting patients and healthcare workers themselves. The in-depth analysis of the themes and subthemes in this study led the authors to hypothesize that expressive writing benefit ICs with respect to the possibility of sharing their experiences with others and giving evidence of their role. Their stories are a testimony that can help those who face a similar experience.

show abstract

Section: Introductionmentioning

confidence: 99%

The power of informal cancer caregivers’ writings: results from a thematic and narrative analysis

Suter

Ardizzone

Giarelli

et al. 2021

Support Care Cancer

View full text Add to dashboard Cite

show abstract

“…During the allo-HSCT trajectory, patients need care and support from their family members, especially when returning home after the long hospital stay, and there are indications that the level and quality of caregiver support influences patients' transplant experience (Rini et al, 2015). Being a family caregiver in allo-HSCT often includes providing practical and physical care to the patient, as well as emotional support (Bergkvist et al, 2018).…”

Section: Introductionmentioning

confidence: 99%

Preparedness for family caregiving prior to allogeneic hematopoietic stem cell transplantation

et al. 2021

View full text Add to dashboard Cite

Objective Allogeneic hematopoietic stem cell transplantation (allo-HSCT) is a curative treatment associated with high morbidity and mortality. It is often necessary for family caregivers to become highly involved in the care, especially when patients return home after a long period of inpatient care. Family caregivers’ preparedness for the tasks and demands of the caregiving role prior to allo-HSCT might help them during this distressing time. The aim of this study was to explore whether demographic factors are associated with preparedness for caregiving prior to allo-HSCT and if such preparedness for caregiving is associated with caregiver outcomes in terms of caregiver burden, anxiety/depression, competence, self-efficacy, and general health among family caregivers. Method This correlational cross-sectional study included 86 family caregivers of patients to undergo allo-HSCT, who completed a self-administered questionnaire on preparedness, caregiver burden, anxiety/depression, competence, self-efficacy, and general health. Descriptive statistics and multiple regression models (linear and ordinal) were used to analyze the data. Results Family caregivers with a higher education and those who were the patient's partner were significantly associated with a higher level of preparedness for caregiving, while gender and age were not significant. Higher preparedness was significantly associated with higher competence and self-efficacy and lower symptoms of depression, even after the model was adjusted for education, relationship to the patient, gender, and age but not for anxiety or caregiver burden. Higher levels of preparedness were also significantly associated with better general health. Significance of results A higher level of preparedness for caregiving prior to allo-HSCT was associated with better family caregiver outcomes. Assessing family caregivers prior to allo-HSCT to identify those with insufficient preparedness might enable the provision of individually tailored psycho-educational support to help them cope with their caregiving role and prevent potential negative consequences.

show abstract

“…Consequently, the SEOLCAS has the ability to not only measure the impact that providing end-of-life care has on Hispanic informal caregivers, but also to differentiate between the type of support that they may need depending on their scores. For example, information gathered from the dimension external contingencies will indicate whether instrumental support may be needed and it can orientate the decisions or interventions that must be taken to offer the instrumental support an individual needs (Rini et al, 2015). Equally, the information gathered from the dimension internal contingencies will indicate whether emotional support may be needed and it can orientate the decisions or interventions that must be taken to provide it (Rini et al, 2015).…”

Section: Discussionmentioning

confidence: 99%

Psychometric evaluation and cultural adaptation of the Spanish version of the “Scale for End-of Life Caregiving Appraisal”

et al. 2018

View full text Add to dashboard Cite

The SEOLCAS' reliability was very high (Cronbach's α = 0.92). Its content validity was excellent (all items' content validity index = 0.8-1; scale's validity index = 0.88). Evidence of the SEOLCAS' criterion validity showed that the participants' scores on the SEOLCAS explained approximately 79.3% of the between-subject variation of their results on the Zarit Burden Interview. Exploratory factor analysis provided evidence of the SEOLCAS' construct validity. This analysis revealed that two factors ("internal contingencies" and "external contingencies") explained 53.77% of the total variance found and reflected the stoic Hispanic attitude toward adversity.Significance of resultsThe Spanish version of the SEOLCAS has shown to be an easily applicable, valid, reliable, and culturally appropriate tool to measure the impact of end-of-life care provision on Hispanic informal caregivers. This tool offers healthcare professionals the opportunity to easily explore Hispanic informal end-of-life caregivers' experiences and discover the type of support they may need (instrumental or emotional) even when there are communicational and organizational constraints.

show abstract

The effectiveness of caregiver social support is associated with cancer survivors' memories of stem cell transplantation: A linguistic analysis of survivor narratives

Cited by 6 publications

References 36 publications

The power of informal cancer caregivers’ writings: results from a thematic and narrative analysis

The power of informal cancer caregivers’ writings: results from a thematic and narrative analysis

Preparedness for family caregiving prior to allogeneic hematopoietic stem cell transplantation

Psychometric evaluation and cultural adaptation of the Spanish version of the “Scale for End-of Life Caregiving Appraisal”

Contact Info

Product

Resources

About