Transiting Back Home: Caregivers' Lived Experiences in Caring for Loved Ones on the Nasogastric Tube in the Home-Setting in Singapore.

INTRODUCTION: Little is understood about caregivers' lived experiences when first caring for patients on the nasogastric tube at home in an Asian setting. To enhance understanding, our study aimed to chart these caregivers' psycho-emotional evolutions felt during such caregiving experiences in Singapore. METHOD: Utilizing purposive sampling, a descriptive phenomenological study was performed, with semi-structured interviews of 10 caregivers of persons on nasogastric tube feeding conducted. Thematic analysis was utilized. RESULTS: Our findings chart four psycho-emotional transitions of a caregiver's journey in nasogastric tube feeding and the cultural dynamics involved-(a) Disruption of Caregivers' Normality: Attempting to Grasp Reality, (b) Encountering Road-Blocks: Despondency Arises and Frustrations Abound, (c) Adjusting to the New Normal: Reclaiming Confidence and Positivity, (d) Thriving and Integrating into the New Normal, and (e) Cultural Dynamics At Play. DISCUSSION: Our findings illuminate the understanding of caregivers' varying needs, guiding delivery of culturally-congruent caregiver support targeted at each psycho-emotional evolution.

'24/7' Caregiving: A Qualitative Analysis of an Emerging Phenomenon of Interest in Caregiving.

The COVID-19 pandemic has exacerbated the difficulties faced by caregivers who have to provide continuous '24/7' care to persons with dementia with minimal formal and informal support. While caregivers have reported heightened levels of caregiving distress and burden during the pandemic, there remains a dearth of research pertaining to their lived experiences of providing continuous care with little respite and the corresponding physical, psychosocial and emotional impacts of caregiving '24/7'. The present study uses data obtained from interviews with dementia caregivers (N = seven) that were collected as part of a larger study on Carer Matters, a hospital-based holistic caregiver support program held during COVID-19, to conduct a secondary thematic analysis. The findings revealed three themes that defined the shared experiences of '24/7' caregivers: (1) A World Overturned, which refers to the increase in caregiving intensity and burden due to the pandemic; (2) Burning on Both Ends, which refers to the impossible balance between caregiving and their personal lives; and (3) At Wits' End, which refers to an overwhelming sense of hopelessness and helplessness over their caregiving situation. These findings highlight the challenges and unsustainability of '24/7' caregiving and the detrimental impact that round-the-clock care wields on caregivers' physical and mental well-being. Implications and recommendations are discussed in accordance with the cultural particularities of the study's Asian context (Singapore), with calls for greater caregiver support to be better integrated into society and the community, especially at the neighborhood and grassroots level, to alleviate caregiving burden and safeguard their well-being.

Four of a kind: Salient caregiver archetypes to better understand the psychosocial needs and behavioral patterns of dementia caregivers in Singapore.

BACKGROUND: Family caregivers' lived experiences are often perceived as a homogenous entity, preventing effective identification of unique caregiving needs and appropriate support. Our study examined and classified the varying dementia caregiving experiences in an Asian setting, through establishing caregiver archetypes. METHODS: Secondary analysis of semi-structured interviews conducted with 16 dementia family caregivers in a Singapore hospital was performed. Thematic analysis and typological analysis were utilized. RESULTS: Four caregiver archetypes (Reluctant, Ambivalent, Enlightened, and Selfless) were identified: Reluctant caregivers possessed poor understanding of dementia and experienced immeasurable distress; Ambivalent caregivers carried mixed feelings towards caregiving and felt unsupported; Enlightened caregivers preserved care-recipients' dignity and accepted challenges with priority on sustainable care; Selfless caregivers were overly-devoted and enmeshed in the caregiver identity. CONCLUSION: Our findings are useful in providing a framework for: (1) rapid understanding of informal caregivers' varying needs, (2) targeted support in a holistic caregiver-centered manner.