Becoming an older caregiver: A study of gender differences in family caregiving at the end of life.

OBJECTIVES: Older people are not traditionally expected to become caregivers. For this reason, the experience of caregiving in older persons has not been explored adequately in the research on gender differences. The objective of this study was to assess the caregiver burden among older family members who care for cancer patients facing the end of their lives, in order to compare their differences according to gender (male vs. female). METHODS: This is a cross-sectional study. A total of 102 older caregivers (aged ≥65 years) of hospice patients were interviewed through the Caregiver Burden Inventory (CBI). The sample group was divided into two gender subgroups. RESULTS: Compared with male caregivers, the older female group reported significantly higher scores in the CBI-physical subscale (P = 0.028), and in the CBI, the overall score (P = 0.0399) confirmed by the generalized linear model (multivariate) evaluation that included possible predictors in the model. There were no significant differences in the other CBI subscale scores (time-dependent, developmental, social, and emotional). SIGNIFICANCE OF RESULTS: Older female caregivers are at higher risk of experiencing burden and worse physical health compared with men. Further research is needed in modern palliative care to assess the role of gender differences in the experience of caregiving when the caregiver is an older person.

Does Family Caregiver Burden Differ Between Elderly and Younger Caregivers in Supporting Dying Patients With Cancer? An Italian Study.

CONTEXT: The aging of the world's population increasingly calls on older people to care for their cancer relatives. This scenario confronts clinicians involved with end-of-life care with an imposing challenge: elderly family caregivers could have a different perception of the burdens associated with assistance compared to their younger counterparts. Palliativists need to know what limits and resources of these new age categories of caregivers could be for a global management of dying patients with cancer and their family. OBJECTIVES: To evaluate the caregiver burden in family caregivers supporting dying patients with cancer in order to compare the differences between 2 different caregivers age groups (younger vs elderly population). METHODS: This is a cross-sectional study. A total of 174 family caregivers of hospice patients were interviewed through the Caregiver Burden Inventory (CBI). The sample group was divided into 2 subgroups aged <65 (younger group) and ≥65 years old (elderly group). RESULTS: Compared with younger caregivers, the elderly group reported significantly higher scores in the CBI-developmental subscale (P = .009) confirmed by the generalized linear model (multivariate) evaluation that included possible predictors in the model. No further differences were found between the 2 age groups in the other CBI scores (time-dependent, physical, social, emotional, and overall score). CONCLUSION: Elderly caregivers are at high risk for experiencing developmental burden. This finding could prompt mental health professionals to pay greater attention to the value that assistance to the family member can have on their personal story and on that of the family or couple.

Exploring the associations between spiritual well-being, burden, and quality of life in family caregivers of cancer patients.

OBJECTIVE: The spiritual dimension is important in the process of coping with stress and may be of special relevance for those caring for cancer patients in the various phases of caregivership, although current attention is most prevalent at the end of life. This study explores the associations among spiritual well-being (SWB), caregiver burden, and quality of life (QoL) in family caregivers of patients with cancer during the course of the disease. METHOD: This is a cross-sectional study. All participants (n = 199) underwent the following self-report questionnaires: the SWB-Index, the Medical Outcomes Study Short Form, and the Caregiver Burden Inventory (CBI). SWB scores were dichotomized at a cutoff corresponding to the 75th percentile. Statistical analyses were made using the Student t or by chi-square test to compare high and low SWB groups.ResultThe high SWB group reported significantly better Medical Outcomes Study Short Form scores in bodily pain (p = 0.035), vitality (p < 0.001), social activities (p = 0.001), mental health (p < 0.001), and in standardized mental component subscales (p < 0.001) than the low SWB group. No significant differences were detected between the two SWB groups in physical activity, physical role, general health, emotional status, and standardized physical component scale. The high SWB group also had better CBI scores in the physical (p = 0.049) and developmental burden (p = 0.053) subscales. There were no significant differences in the other CBI scores (overall and sections).Significance of resultsThis study points out that high SWB caregivers have a more positive QoL and burden. Knowledge of these associations calls for more attention on the part of healthcare professionals toward spiritual resources among family cancer caregivers from the moment of diagnosis and across the entire cancer trajectory.

Life for patients with myelofibrosis: the physical, emotional and financial impact, collected using narrative medicine-Results from the Italian 'Back to Life' project.

PURPOSE: Myelofibrosis (MF) is a chronic myeloproliferative neoplasm characterised by an aggressive clinical course, with disabling symptoms and reduced survival. Patients experience a severely impaired quality of life and their families face the upheaval of daily routines and high disease-related financial costs. The aim of this study was to investigate the perceptions of Italian patients and their caregivers about living with MF and the burden of illness associated with MF. METHODS: A quali-quantitative questionnaire and a prompted written narrative survey were administered to patients affected by primary or post-essential thrombocythemia/post-polycythaemia vera MF and their primary caregiver in 35 Italian haematological centres. RESULTS: In total, 287 questionnaires were returned by patients and 98 by caregivers, with 215 and 62, respectively, including the narrative. At the time of diagnosis, the most commonly expressed emotional states of patients were fear, distress and anger, confirming the difficulty of this phase. A high level of emotional distress was also reported by caregivers. Along the pathway of care, the ability to cope with the disease differed according to the quality of care received. The mean cost to each patient attributable to MF was estimated as €12,466 per year, with an estimated average annual cost of loss of income of €7774 per patient and €4692 per caregiver. CONCLUSIONS: Better understanding of the personal life of MF patients and their families could improve the relationships between health workers and patients, resulting in better focused healthcare pathways and more effective financial support to maintain patients in their social roles.

Spiritual well-being associated with personality traits and quality of life in family caregivers of cancer patients.

PURPOSE: This study focuses on the spiritual well-being (SWB) of the family caregivers of cancer patients, examining the relationship with personality traits and quality of life (QoL) in palliative and curative care settings. METHODS: All participants (n = 199) underwent the following self-report questionnaires: the Structural Analysis of Social Behavior (SASB)-Form A, the SWB Index, and the Medical Outcomes Study Short Form (SF-36). SWB scores were dichotomized at a cutoff corresponding to the 75th percentile. STATISTICAL ANALYSIS: Student's t test or by χ squared tests to compare high and low SWB and multivariate linear regression to estimate relations between SWB, SASB clusters (Cl), and QoL dimensions. RESULTS: Caregivers with high SWB reported significantly better scores than low SWB caregivers in the following SF-36 subscales: bodily pain (p = 0.035), vitality (p < 0.001), social activities (p < 0.001), mental health subscales (p < 0.001), and standardized mental component (p < 0.001) in the SASB Cl2 (p < 0.005), SASB Cl7 (p = 0.007), and SASB Cl8 (p < 0.001). Multivariate linear regression was performed with vitality, standardized mental component, SASB Cl2, SASB Cl7, and SASB Cl8. Greater SWB is associated with greater vitality (p < 0.001), mental standardized component (p < 0.001), and SASB Cl2 (p < 0.001), but lower SASB Cl7 (p < 0.05) and SASB Cl8 (p < 0.05); palliative care is associated with greater SASB Cl8 (p < 0.05) and lower standardized mental component compared with the caregivers in active care. CONCLUSIONS: This study points out that caregivers who experience low SWB have a poorer QoL and more problematic intrapsychic aspects of personality, such as low self-acceptance of their own emotions, are self-refusing and unable to be in contact with their own feelings. This suggests that spirituality could be a source of strength and a potential avenue for therapeutic intervention.