Dynamics of informal BMT caregiving

Abstract

Significance: Blood and marrow transplant (BMT) is a potentially curative therapy for patients with life-threatening illnesses. Over the last 10 years, family caregiving has become an essential aspect of BMT to support the patient emotionally and to provide assistance with physical care and symptom management. Theoretical/scientific framework: A conceptual Informal Caregiving Dynamics model derived from the literature identifies commitment, expectations, and role negotiation as moving the caregiving relationship along an illness trajectory. Problem and purpose: An important goal for nurses is to assist family caregivers to improve outcomes for BMT patients and caregivers. Achieving this goal requires understanding of the dynamics of caregiving. The purpose of this study was to validate and refine the model of Informal Caregiving Dynamics based on the experiences of caregivers of patients undergoing BMT. The validated model of Informal Caregiving Dynamics will give guidance in the development of supportive caregiver interventions. Methods: This was a qualitative, cross-sectional study. The study sample was 40 family caregivers of patients undergoing BMT at a comprehensive cancer center in the south-central United States. The caregivers described their experiences approximately 1 month after the BMT in audiotaped dialogues, focusing on their present experience of caregiving with attention to past experiences and future hopes that affected the present experience. Analysis and identification of categories and themes by the researcher were reviewed and confirmed by otherresearchers experienced in qualitative analysis, oncology nursing, informal caregiving, and BMT. Data analysis: An exploratory descriptive method was used to identify categories and themes from the transcribed dialogues. Descriptive statistics were used to describe the sociodemographic characteristics of the caregivers and the sociodemographic and disease/treatment characteristics of the patients. Findings and implications: Evidence of commitment, expectations, and role negotiation was found in the interviews. Commitment was the most consistently present category. Analysis of dialogues enabled refinement of the Informal Caregiving Dynamics model to guide care of family caregivers and inform ongoing research to test supportive interventions. Significance: Blood and marrow transplant (BMT) is a potentially curative therapy for patients with life-threatening illnesses. Over the last 10 years, family caregiving has become an essential aspect of BMT to support the patient emotionally and to provide assistance with physical care and symptom management. Theoretical/scientific framework: A conceptual Informal Caregiving Dynamics model derived from the literature identifies commitment, expectations, and role negotiation as moving the caregiving relationship along an illness trajectory. Problem and purpose: An important goal for nurses is to assist family caregivers to improve outcomes for BMT patients and caregivers. Achieving this goal requires understanding of the dynamics of caregiving. The purpose of this study was to validate and refine the model of Informal Caregiving Dynamics based on the experiences of caregivers of patients undergoing BMT. The validated model of Informal Caregiving Dynamics will give guidance in the development of supportive caregiver interventions. Methods: This was a qualitative, cross-sectional study. The study sample was 40 family caregivers of patients undergoing BMT at a comprehensive cancer center in the south-central United States. The caregivers described their experiences approximately 1 month after the BMT in audiotaped dialogues, focusing on their present experience of caregiving with attention to past experiences and future hopes that affected the present experience. Analysis and identification of categories and themes by the researcher were reviewed and confirmed by otherresearchers experienced in qualitative analysis, oncology nursing, informal caregiving, and BMT. Data analysis: An exploratory descriptive method was used to identify categories and themes from the transcribed dialogues. Descriptive statistics were used to describe the sociodemographic characteristics of the caregivers and the sociodemographic and disease/treatment characteristics of the patients. Findings and implications: Evidence of commitment, expectations, and role negotiation was found in the interviews. Commitment was the most consistently present category. Analysis of dialogues enabled refinement of the Informal Caregiving Dynamics model to guide care of family caregivers and inform ongoing research to test supportive interventions.