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Does the Experience of Caring for a Severely Disabled Relative Impact Advance Care Planning? A Qualitative Study of Caregivers of Disabled Patients.

ABSTRACT: The aging of the Taiwanese population has become a major issue. Previous research has focused on the burden and stress faced by caregivers, but has not explored how the experience of these caregivers influences decisions of advance care planning (ACP). Semi-structured and in-depth interviews were conducted. Qualitative content analysis was used to identify important themes. Five themes and fourteen sub-themes were identified: (1) Past experiences: patient wishes, professional recommendations, and expectation about disease progress; (2) Impact of care on family members: positive affirmation, open-minded life, social isolation and health effects, and financial and life planning effects; (3) Attitude toward life: not forcing to stay, and not becoming a burden, (4) Expected proxy dilemmas: torment between doing or not, seeing the extension of suffering and toil, and remorse and self-blame; (5) Expectation of end of life (EOL) care: caregiver's experience and EOL care decisions, and practicality of EOL decision making. After making multiple medical decisions for their disabled relatives, caregivers are able to calmly face their own medical decisions, and "not becoming a burden" is their primary consideration. It's suggested that implementation of shared decision-making on medical care for patients with chronic disability will not only improve the quality of their medical care but also reduce the development of remorse and guilty feelings of caregivers after making medical decisions.

SUBMITTER: Chiang FM

PROVIDER: S-EPMC7084922 | biostudies-literature | 2020 Mar

REPOSITORIES: biostudies-literature

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Does the Experience of Caring for a Severely Disabled Relative Impact Advance Care Planning? A Qualitative Study of Caregivers of Disabled Patients.

Chiang Fu-Ming FM Hsieh Jyh-Gang JG Fan Sheng-Yu SY Wang Ying-Wei YW Wang Shu-Chen SC

International journal of environmental research and public health 20200302 5

The aging of the Taiwanese population has become a major issue. Previous research has focused on the burden and stress faced by caregivers, but has not explored how the experience of these caregivers influences decisions of advance care planning (ACP). Semi-structured and in-depth interviews were conducted. Qualitative content analysis was used to identify important themes. Five themes and fourteen sub-themes were identified: (1) Past experiences: patient wishes, professional recommendations, an ...[more]

PMID: 32121624

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Project description:BackgroundIndividuals' willingness to engage in advance care planning is influenced by factors such as culture and religious beliefs. While most studies on advance care planning in Asia have been performed in high-income countries, Indonesia is a lower-middle-income country, with a majority of strongly collectivist and religiously devout inhabitants. We studied the perspectives of Indonesian patients with cancer and family caregivers regarding advance care planning by first exploring their experiences with medical information-disclosure, decision-making, and advance care planning and how these experiences influence their perspectives on advance care planning.MethodsWe conducted semi-structured interviews among 16 patients with cancer and 15 family caregivers in a national cancer center in Jakarta and a tertiary academic general hospital in Yogyakarta. We performed an inductive thematic analysis using open, axial, and selective coding. The rigor of the study was enhanced by reflective journaling, dual coding, and investigator triangulation.ResultsTwenty-six of 31 participants were younger than 60 years old, 20 were Muslim and Javanese, and 17 were college or university graduates. Four major themes emerged as important in advance care planning: (1) participants' perceptions on the importance or harmfulness of cancer-related information, (2) the importance of communicating bad news sensitively (through empathetic, implicit, and mediated communication), (3) participants' motives for participating in medical decision-making (decision-making seen as patients' right or responsibility, or patients' state of dependency on others), and (4) the complexities of future planning (e.g., due to its irrelevance to participants' religious beliefs and/or their difficulties in seeing the relevance of future planning).ConclusionsCulturally sensitive approaches to advance care planning in Indonesia should address the importance of facilitating open communication between patients and their families, and the various perspectives on information provision, bad news communication, and decision-making. Advance care planning should focus on the exploration of patients' values, rather than drafting treatment plans in advance.

Project description:Background and objectivesMore than 90,000 patients with ESRD die annually in the United States, yet advance care planning (ACP) is underutilized. Understanding patients' and families' diverse needs can strengthen systematic efforts to improve ACP.Design, setting, participants, & measurementsIn-depth interviews were conducted with a purposive sample of patients and family/friends from dialysis units at two study sites. Applying grounded theory, interviews were audiotaped, professionally transcribed, and analyzed in an iterative process. Emergent themes were identified, discussed, and organized into major themes and subthemes.ResultsThirteen patients and nine family/friends participated in interviews. The mean patient age was 63 years (SD 14) and five patients were women. Participants identified as black (n=1), Hispanic (n=4), Native American (n=4), Pacific Islander (n=1), white (n=11), and mixed (n=1). Three major themes with associated subthemes were identified. The first theme, "Prior experiences with ACP," revealed that these discussions rarely occur, yet most patients desire them. A potential role for the primary care physician was broached. The second theme, "Factors that may affect perspectives on ACP," included a desire for more of a connection with the nephrologist, positive and negative experiences with the dialysis team, disenfranchisement, life experiences, personality traits, patient-family/friend relationships, and power differentials. The third theme, "Recommendations for discussing ACP," included thoughts on who should lead discussions, where and when discussions should take place, what should be discussed and how.ConclusionsMany participants desired better communication with their nephrologist and/or their dialysis team. A number expressed feelings of disenfranchisement that could negatively impact ACP discussions through diminished trust. Life experiences, personality traits, and relationships with family and friends may affect patient perspectives regarding ACP. This study's findings may inform clinical practice and will be useful in designing prospective intervention studies to improve patient and family experiences at the end of life.

Project description:BackgroundThe Singapore national Advance Care Planning (ACP) programme was launched in 2011 with the purpose of ensuring that healthcare professionals are fully aware of patients' treatment preferences. There is little research assessing the performance of such programmes in ethnically diverse Asian countries; hence, the purpose of this study was to qualitatively examine patients and caregivers' experiences with the ACP programme.MethodWe conducted interviews with 28 participants, thirteen of whom identified as proxy decision makers (PDMs) and the remainder as patients. Interviews focused on respondents' experiences of chronic illness and of participating in the ACP programme. Textual data was analysed through a framework analysis approach.ResultsParticipants' narratives focused on four major themes with 12 subthemes: a) Engagement with Death, factors influencing respondents' acceptance of ACP; b) Formation of Preferences, the set of concerns influencing respondents' choice of care; c) Choice of PDM, considerations shaping respondents' choice of nominated health spokesperson; and d) Legacy Solidification, how ACP is used to ensure the welfare of the family after the patient passes. These findings led to our development of the directive decision-making process framework, which delineates personal and sociocultural factors influencing participants' decision-making processes. Respondents' continual participation in the intervention were driven by their personal belief system that acted as a lens through which they interpreted religious doctrine and socio-cultural norms according to their particular needs.ConclusionThe directive decision-making process framework indicated that ACP could be appropriate for the Asian context because participants displayed an awareness of the need for ACP and were able to develop a concrete treatment plan. Patients in this study made decisions based on their perceived long-term legacy for their family, who they hoped to provide with a solid financial and psychological foundation after their death.

Project description:IntroductionPatients in intensive care units (ICUs) may transition into an end-of-life phase during treatment. Advance care planning (ACP) for this population has not been studied comprehensively, and support for its implementation is insufficient.ObjectiveThis study aims to clarify the ACP support needs among critical perioperative patients.MethodsIn this qualitative descriptive study, semistructured interviews were conducted with patients previously admitted to the ICU. The survey was conducted from September to November 2019. Participants comprised 13 individuals, who were admitted to the ICU for a period of 3 months to 2 years after surgery.ResultsThe average age of the participants was 63.8 years. The average mechanical ventilation duration following surgery was 24.5 h. The interviews focused on the ACP needs from the preoperative period to discharge. About 90% of the patients thought about the possibility of death before surgery and considered giving advance orders (e.g., "I don't want life-sustaining treatment"). The participants discussed inheritance, work-related matters, and household issues with their families but rarely spoke about treatment and care. Although they examined the content of the advance directives, the medical staff was not informed about them. Patients revealed that they wanted to understand the distinction between life-prolonging and life-saving treatments and discuss it with the medical staff, apart from being educated on ACP. Many patients previously admitted to the ICU are unclear about the difference between life-prolonging and life-saving treatments; this is also true for medical staff.ConclusionPatients who had been admitted to the ICU after high-risk surgery thought they needed help with ACP before surgery. Therefore, patients have the right to know about treatment risks; however, medical staff believes that this is difficult to communicate. Thus, medical staff should consider ways to communicate clearly with patients, including discussing the risks associated with surgery.

Dataset Information

Does the Experience of Caring for a Severely Disabled Relative Impact Advance Care Planning? A Qualitative Study of Caregivers of Disabled Patients.

Publications

Does the Experience of Caring for a Severely Disabled Relative Impact Advance Care Planning? A Qualitative Study of Caregivers of Disabled Patients.

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