Dilemmas of Decision-Making of Primary Family Caregivers in Transferring Ventilator-Dependent Patients from Intensive Care Unit to Respirator Care Ward

• Main Authors: Pei-Chia Lee, 李佩佳
• Other Authors: Fu-Jin Shih
• Format: Others
• Language: zh-TW
• Published: 2009
• Online Access: http://ndltd.ncl.edu.tw/handle/52231929732401807421

碩士 === 國立陽明大學 === 臨床暨社區護理研究所 === 97 === Background Recently, the case number of long-term ventilator-dependent patients (VDP) has rapidly increased in both intensive care units (ICU) and respiratory care wards (RCW) in Taiwan. Under the limitation of current policies of National Health Insurance (NHI) and the shortage of medical resources, most health institutes would require VDP’s primary family care-givers (PFCG) to agree with their transferring decisions on caring location (TDCL) between ICU and RCW. The related discrepancies between health professionals (HP) and PFCG were over heard. It is important for HP to better understand their clients’ worries and needs to achieve a mutual agreement on TDCL and related caring protocols. Purposes Aims of this study were to explore: (1)the dilemmas and contributing factors of decision-making process which PFCG were encountered in managing VDP’s TDCL from ICU into RCW; (2)the caring dilemmas and contributing factors which PFCG were encountered in managing VDP’s TDCL from ICU into RCW; (3)the adaptation strategies used by PFCG in managing VDP’s TDCL from ICU into RCW; and (4)PFCG’s expectations for managing VDP’s TDCL from ICU into RCW. Method An explored qualitative research method was used in this study. A purposive sample was obtained from two RCWs in southern Taiwan. Data were collected through semi-structured face-to-face in-depth interviews, and then analyzed by qualitative content analysis. Results Twenty PFCG participated in this study. Their age ranged from 38 to 82 years (Mean ± SD= 51.8 ± 9.9). Seventeen of them were women. The decision-making process for all PFCG in terms of VDP’s TDCL from ICU into RCW were identified to encompass the following seven sequential stages: “being-informed stage”, “acceptance stage”, “selection stage”, “decision-making stage”, “waiting stage”, and “post-admission evaluation stage”. For the PFCG with no previous related decision experiences or psychological preparations, they further went through “being-informed stage”, “confusion transition”, “negotiation transition”, and then “acceptance stage”. For the PFCG with no previous related decision experiences but with psychological preparations, they went through “being-informed stage”, “negotiation transition”, and then “acceptance stage”. The contents of dilemmas in each stage were not identical. In the “being-informed stage”, they are: (a) being in charged by HP; (b) the informed reasons and rationales for transferring from ICU to RCW; and (c) the caring information provided by HP. The dilemmas in the “Confusion transition” are the discrepancies between outcomes, and self-expectations, and the uncertainty about VDP’s health status and caring needs. In the “negotiation transition”, they are: (a) the possibilities in staying in original units in the hospital; (b) evaluating strengths and limitations of hospital-care or home-care modules; (c) the suggestions and advised from HP and other significant others. The dilemmas in this transition are: (a) lack of RCW in the original hospital; (b) lack of adequate manpower and equipment in flow units; (c) discrepancies in regulations between NHI and hospitals; and (d) lack of preparation for immediate home-care. The contents of decision-making as well as the dilemmas in “acceptance stage” are having no privilege of argument with HP for transferring, and realizing the difficulties in caring for VDP. The contents of decision-making in “selection stage” are being in charged by the HP decision-makers, and the discussion among family members. The dilemma in this stage is inadequate vacancy in the expected RCW. The contents of decision-making in the “waiting stage” are: (a) arrangement of TDCL; (b) inviting VDP to compliant with the decisions; (c) practicing adjustment and psychological preparations; and (d) expectations for RCW. The dilemma in this stage is the uncertainties about caring quality of RCW and information transitions from ICU to RCW. Last, the contents of decision-making in the “post-admission evaluation stage” are: (a) VDP’s health status; (b) cognitively and psychologically practicing acceptance of the decision; and (c) motivations for transferring to another health institute. The following five caring dilemmas for VDP perceived by PFCG were identified: (a) anxiety about patient's unpromising health condition; (b) the unmet quality of medical care; (c) the fear of aggressive medical treatment; (d) the disorder of life and social roles; and (e) the insufficient financial and caring resources. The factors contributing to the PFCG’s caring dilemmas involve five aspects. First, the patient-related factors were the severity of patient’s health due to long-time sickness, and the elderly of patient. Second, the PFCG related factors were being unwilling to put the patient to tolerate unpredictable outcomes, and limited understanding of the caring plans for patients. Third, the family-related factors were the conflict between self-concept and traditional beliefs of family roles, limited financial and family support system, and the discrepancies of caring beliefs among family members. Fourth, the HP related factors were the poor attitudes of HP, over workload of staff and limited manpower, lack of positive mutual communication and discussion system between HP team members, and the ineffective ward management systems. Last, the socio-cultural related factors were the traditional Chinese beliefs, the stress from society and public. The PFCG practiced different adaptation strategies for different caring dilemmas. They addressed their expectations for patients’ health condition, caring, themselves, and social supporting resources. There are “initial decision-making phase”, “midcourse adjustment phase”, and “after-transferring adaptation phase” embedded in their TDCL process including transferring out from ICU and admitting to RCW. They would evaluate the quality of care after VDP were admitted to RCW, and they may further decide to transfer the patients to another health institute if the quality of care in RCW did not meet their expectations. Conclusions This project first in-depth discover the difficulties and contributing factors perceived by VDP’s PFCG before and during the decision-making process of transferring VDP from ICU to RCW in Taiwan. Most of the PFCG in this project lacked of experiences of managing the complex transferring decisions for VDP. Their difficulties were involved with multiple aspects. Many of them worried about home care for patients due to lack of knowledge and competence. The HP in the hospital often hurries them to agree with the suggestions of transferring the VDP to RCW due to limited medical resources and regulations of NIGH. As such, the PFCG reported having suffered from intense psychological and tangible pressure. PFCG’s decision making patterns were not identical and were related to their previous decision-making experiences, and psychological preparations for taking care of long-term VDP. It would be helpful to facilitate the consensus in transferring decision-making between PFCG and HP if HP could provide needed medical and social support information in advanced and throughout the transferring process in a more friendly and workable way. The development of transferring checklist would be helpful for PFCG to learn the progression of this issue. Then, their concerns and sense of helplessness will be better managed, and the quality of care will be more possibly acknowledged. Future researchers are suggested to investigate the caring levels for VDP with different health and socio-economic conditions, and the effective ways to integrate the available caring resources for VDP to facilitate the reasonable TDCL. The findings of this project would provide first-hand evidence for health professionals to provide better quality of helping PFCG to make related decisions, and for administrators as well as government to improve the quality of related policies in the future.