Caregiving Experiences Of Family Caregivers Of Cancer Patients Receiving Home-based Palliative Care

OBJECTIVE1.To analyze the correlation between caregiver burden,positive aspect of caregiving,coping styles,quality of life,and index of well-being;To explore and test a caregiving experience model by structural equation modeling(SEM)in the family caregivers of cancer patients receiving home-based palliative care.2.To explore the true feelings and experiences of family caregivers in home-based hospice service.METHODSQuantitative study:The investigation was carried out from November 2017 to August 2018.Totally 246 family caregivers of cancer patients receiving home-based palliative care were selected and interviewed with Zarit Caregiver Burden Interview,Positive Aspects of Caregiving,Simplified Coping Style Questionnaire,World Health Organization Quality of Life BREF and Index of Well-Being.By using Stress,Appraisal and Coping Model,Stress Process Model and Two-Factor Model as a theoretical framework,a caregiving experience model was hypothesized and tested.Qualitative study:A phenomenological method was used.This study analyzes themes from semi-structured interviews with 17 caregivers from diverse backgrounds caring for their loved ones with end-stage cancer to explore the caregiving experience during the end-of-life care process.Statistical methods:Independent samples T-test,one way ANOVA and Spearman correlation analysis were used to analyze data that was collected by questionnaires.The Structural equation model(SEM)was used to test the five-factor caregiving experience model.Data from 17 in-depth interviews are being analyzed using Colaizzi's method of empirical phenomenology.RESULTSQuantitative study1.The total score of ZBI,PAC,two dimensions of SCSQ(negative coping style and positive coping style),General Quality of Life and Health and four domains of WHOQOL-BREF(Physical health Domain,Psychological Domain,Social relations Domain,and Environment Domain)and IWB were(27.84±14.04),(31.78±5.91),(1.90±0.61),(1.35±0.58),(13.28±2.52),(13.28±2.52),(12.90±1.94),(13.95±1.95),(12.11±1.90)and(9.841±1.65)respectively.2.Caregiver burden had significant statistical differences in ages,marital status,duration of caregiving of family caregivers and other characteristics(P<0.05).The positive aspect of caregiving had significant statistical differences in religions,closeness to patients,duration of caregiving of family caregivers and other characteristics(P<0.05).The positive coping style had significant statistical differences in educational levels,willingness,duration of daily care of family caregivers and other characteristics(P<0.05).The negative coping style had significant statistical differences in income levels,relationships with patients,educational levels and other characteristics(P<0.05).General Quality of Life and Health had significant statistical differences in the number of people caring for a patient,duration of daily care,whether live with patients or not and other characteristics(P<0.05).Index of Well-being had significant statistical differences in income levels,relationships with patients,employment status,whether live with patients or not and other characteristics(P<0.05).3.Caregiver burden had positive correlated relationships with negative coping style and positive aspect of caregiving,and negatively correlated relationships with positive coping style and quality of life;Positive aspect of caregiving had positive correlated relationships with positive coping style and quality of life,and negatively correlated relationships with negative coping style;Positive coping style had positive correlated relationships with quality of life and well-being;Negative coping style had negatively correlated relationships with quality of life and well-being;Quality of life had a positive correlated relationships with well-being.4.The Structural equation model demonstrated that caregiver burden had a direct effect on positive aspects of caregiving;Caregiver burden and positive aspect of caregiving had a direct effect on the quality of life,and an indirect effect by coping style on quality of life and well-being;Quality of life had a direct effect on well-being.Qualitative study1.The experience of family caregivers for cancer patients in home-based palliative care can be summarized in 8 themes,which indicate that caregivers had a positive and negative experience.2.The negative experience includes enormous challenges,heavy psychometrics burden,and lessened family functions.The positive experience includes finding the meaning of the caregiver's role,personal benefits,sense of achievement,positive change in relationships with others and focusing and reflecting on the relevant social status.CONCLUSION1.Medical staff should make personalized care plans based on the assessment of caregivers' demographics and caregiving characteristics,so as to promote positive and effective evaluation and response,and improve caregivers' outcomes.2.Medical staff should pay attention to the buffer of positive evaluation to caregiving stress and the personal positive potential of caregivers,so as to guide them to find the positive connotation of caregiving,and reduce the negative evaluation.3.Medical staff should attach importance to the assessment of caregivers'coping styles and resources,provide relevant information and skills training,and help them to cope effectively,so as to improve the quality of life and well-being.4.The caring experience brings negative experiences as well as growth and gain to caregivers.Medical staff should conduct dynamic and comprehensive assessments of care experiences,and promote the long-term positive impact of end-of-life caregiving on individuals and society.