Blessings or burdens: an Interpretative Phenomenological Analysis (IPA) study on the motivations and their impact on end-of-life caregiving among Asian family caregivers

Abstract Background While the impact of family caregiving has been well-documented, many of such studies center on investigating external factors such as socioeconomic status, accessibility to resources and availability of social support as the primary causation of caregiver wellbeing outcomes. This...

Full description

Bibliographic Details
Main Authors: Geraldine Tan-Ho, Ping Ying Choo, Paul Victor Patinadan, Casuarine Xinyi Low, Andy Hau Yan Ho
Format: Article
Language:English
Published: BMC 2020-08-01
Series:BMC Palliative Care
Subjects:
Online Access:http://link.springer.com/article/10.1186/s12904-020-00638-6
_version_ 1819145302129508352
author Geraldine Tan-Ho
Ping Ying Choo
Paul Victor Patinadan
Casuarine Xinyi Low
Andy Hau Yan Ho
author_facet Geraldine Tan-Ho
Ping Ying Choo
Paul Victor Patinadan
Casuarine Xinyi Low
Andy Hau Yan Ho
author_sort Geraldine Tan-Ho
collection DOAJ
description Abstract Background While the impact of family caregiving has been well-documented, many of such studies center on investigating external factors such as socioeconomic status, accessibility to resources and availability of social support as the primary causation of caregiver wellbeing outcomes. This paper explores the motivations that drive family caregivers in supporting their family members at the end-of-life, and critically examines how internal appraisal processes of such motivations can both positively and negatively impact their wellbeing. Methods This study adopted an interpretative phenomenological analysis (IPA) to investigate the motivations and internal appraisal processes of Asian family caregivers in Singapore who were tending to a dying family member. Qualitative dyadic interview data (N = 20) was drawn from a larger Randomized Controlled Trial for a novel Family Dignity Intervention (FDI) for palliative care patients and their families. The sampling population consisted of participants aged 21 and above who were identified to be the primary caregivers of older palliative care patients with a prognosis of less than 12 months. Data collection was conducted in the homes of patients and family caregivers. Results Findings revealed six themes that could either nurture or diminish caregiver wellbeing: 1) Honoring Fidelity (caregivers were motivated to commit to their caregiving roles in order to avoid regret), 2) Alleviating Suffering (caregivers were motivated to relieve their family member’s pain), 3) Enduring Attachment (caregivers were motivated to spend time together with their family member), 4) Preserving Gratitude (caregivers were motivated to express their appreciation to their family member by caregiving), 5) Navigating Change (caregivers were motivated to adapt accordingly to changes in the illness trajectory) and 6) Reconciling with Mortality (caregivers were motivated to respond accordingly to their family member’s prognosis). The final theme of the Wellbeing Determinant is posited as an indication of self-determination, and is conjectured to influence how caregiving motivations are appraised by the caregiver. Conclusion Fulfilling and enhancing one’s sense of self-determination appears central to infusing one’s caregiving motivations with positive meaning, and consequently nurturing one’s wellbeing in the end-of-life caregiving journey. These findings are discussed with recommendations for healthcare professionals working with family caregivers of palliative care patients.
first_indexed 2024-12-22T12:55:52Z
format Article
id doaj.art-09f5d9d546cb43ae9be3dab6c79ca0ea
institution Directory Open Access Journal
issn 1472-684X
language English
last_indexed 2024-12-22T12:55:52Z
publishDate 2020-08-01
publisher BMC
record_format Article
series BMC Palliative Care
spelling doaj.art-09f5d9d546cb43ae9be3dab6c79ca0ea2022-12-21T18:25:07ZengBMCBMC Palliative Care1472-684X2020-08-0119111010.1186/s12904-020-00638-6Blessings or burdens: an Interpretative Phenomenological Analysis (IPA) study on the motivations and their impact on end-of-life caregiving among Asian family caregiversGeraldine Tan-Ho0Ping Ying Choo1Paul Victor Patinadan2Casuarine Xinyi Low3Andy Hau Yan Ho4Psychology Programme, School of Social Sciences, Nanyang Technological UniversityPsychology Programme, School of Social Sciences, Nanyang Technological UniversityPsychology Programme, School of Social Sciences, Nanyang Technological UniversityPsychology Programme, School of Social Sciences, Nanyang Technological UniversityPsychology Programme, School of Social Sciences, Nanyang Technological UniversityAbstract Background While the impact of family caregiving has been well-documented, many of such studies center on investigating external factors such as socioeconomic status, accessibility to resources and availability of social support as the primary causation of caregiver wellbeing outcomes. This paper explores the motivations that drive family caregivers in supporting their family members at the end-of-life, and critically examines how internal appraisal processes of such motivations can both positively and negatively impact their wellbeing. Methods This study adopted an interpretative phenomenological analysis (IPA) to investigate the motivations and internal appraisal processes of Asian family caregivers in Singapore who were tending to a dying family member. Qualitative dyadic interview data (N = 20) was drawn from a larger Randomized Controlled Trial for a novel Family Dignity Intervention (FDI) for palliative care patients and their families. The sampling population consisted of participants aged 21 and above who were identified to be the primary caregivers of older palliative care patients with a prognosis of less than 12 months. Data collection was conducted in the homes of patients and family caregivers. Results Findings revealed six themes that could either nurture or diminish caregiver wellbeing: 1) Honoring Fidelity (caregivers were motivated to commit to their caregiving roles in order to avoid regret), 2) Alleviating Suffering (caregivers were motivated to relieve their family member’s pain), 3) Enduring Attachment (caregivers were motivated to spend time together with their family member), 4) Preserving Gratitude (caregivers were motivated to express their appreciation to their family member by caregiving), 5) Navigating Change (caregivers were motivated to adapt accordingly to changes in the illness trajectory) and 6) Reconciling with Mortality (caregivers were motivated to respond accordingly to their family member’s prognosis). The final theme of the Wellbeing Determinant is posited as an indication of self-determination, and is conjectured to influence how caregiving motivations are appraised by the caregiver. Conclusion Fulfilling and enhancing one’s sense of self-determination appears central to infusing one’s caregiving motivations with positive meaning, and consequently nurturing one’s wellbeing in the end-of-life caregiving journey. These findings are discussed with recommendations for healthcare professionals working with family caregivers of palliative care patients.http://link.springer.com/article/10.1186/s12904-020-00638-6Palliative careCaregiverMotivationsWellbeingMeaningBurnout
spellingShingle Geraldine Tan-Ho
Ping Ying Choo
Paul Victor Patinadan
Casuarine Xinyi Low
Andy Hau Yan Ho
Blessings or burdens: an Interpretative Phenomenological Analysis (IPA) study on the motivations and their impact on end-of-life caregiving among Asian family caregivers
BMC Palliative Care
Palliative care
Caregiver
Motivations
Wellbeing
Meaning
Burnout
title Blessings or burdens: an Interpretative Phenomenological Analysis (IPA) study on the motivations and their impact on end-of-life caregiving among Asian family caregivers
title_full Blessings or burdens: an Interpretative Phenomenological Analysis (IPA) study on the motivations and their impact on end-of-life caregiving among Asian family caregivers
title_fullStr Blessings or burdens: an Interpretative Phenomenological Analysis (IPA) study on the motivations and their impact on end-of-life caregiving among Asian family caregivers
title_full_unstemmed Blessings or burdens: an Interpretative Phenomenological Analysis (IPA) study on the motivations and their impact on end-of-life caregiving among Asian family caregivers
title_short Blessings or burdens: an Interpretative Phenomenological Analysis (IPA) study on the motivations and their impact on end-of-life caregiving among Asian family caregivers
title_sort blessings or burdens an interpretative phenomenological analysis ipa study on the motivations and their impact on end of life caregiving among asian family caregivers
topic Palliative care
Caregiver
Motivations
Wellbeing
Meaning
Burnout
url http://link.springer.com/article/10.1186/s12904-020-00638-6
work_keys_str_mv AT geraldinetanho blessingsorburdensaninterpretativephenomenologicalanalysisipastudyonthemotivationsandtheirimpactonendoflifecaregivingamongasianfamilycaregivers
AT pingyingchoo blessingsorburdensaninterpretativephenomenologicalanalysisipastudyonthemotivationsandtheirimpactonendoflifecaregivingamongasianfamilycaregivers
AT paulvictorpatinadan blessingsorburdensaninterpretativephenomenologicalanalysisipastudyonthemotivationsandtheirimpactonendoflifecaregivingamongasianfamilycaregivers
AT casuarinexinyilow blessingsorburdensaninterpretativephenomenologicalanalysisipastudyonthemotivationsandtheirimpactonendoflifecaregivingamongasianfamilycaregivers
AT andyhauyanho blessingsorburdensaninterpretativephenomenologicalanalysisipastudyonthemotivationsandtheirimpactonendoflifecaregivingamongasianfamilycaregivers