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Little is known about the associations between family satisfaction with end-of-life care and caregiver burden. We conducted a researcher-assisted questionnaire survey to clarify the impact of caregiver burden on family satisfaction and to determine the types of burden that decrease family satisfaction.
Bereaved family caregivers of patients with advanced cancer who received our outreach palliative care service were retrospectively identified. Family satisfaction with the end-of-life care provided by the palliative care service and caregiver burden were quantified using the Japanese versions of the FAMCARE Scale and the Zarit Burden Interview (ZBI), respectively.
Our study subjects included 23 family caregivers. The mean scores on the FAMCARE Scale and the ZBI for the total population were 72.8 ± 11.2 and 22.8 ± 17.3, respectively, indicating moderate-to-high satisfaction and low-to-moderate burden. Caregiver burden had a strong negative correlation to family satisfaction with end-of-life care (Spearman's rho [ρ] = −0.560, p = 0.005), which remained after adjustment for potential confounders (standardized beta [β] = −0.563, p = 0.01). Several burden items—including loss of control, personal time, social engagement with others, feeling angry with the patient, feeling that the patient wants more help than he/she needs, and a wish to leave the care to someone else—were associated with decreased satisfaction. The major cause of dissatisfaction for family members included the information provided regarding prognosis, family conferences with medical professionals, and the method of involvement of family members in care decisions.
Significance of results:
Caregiver burden can be a barrier to family satisfaction with end-of-life care at home. A home care model focused on caregiver burden could improve end-of-life experiences for patients and family caregivers.
A quarter of humanity today lives without access to any electricity and almost one-half still depends on solid fuels such as unprocessed biomass, coal, or charcoal for its thermal needs. These people continue to suffer a multitude of impacts detrimental to their welfare. Most live in rural villages and urban slums in developing nations. Access to affordable modern energy carriers is a necessary, but insufficient step toward alleviating poverty and enabling the expansion of local economies.
Even among populations with physical access to electricity and modern fuels, a lack of affordability and reliable supplies limits the extent to which a transition to using these can occur. Those who can afford the improved energy carriers may still not be able to afford the upfront costs of connections or the conversion technology or equipment that makes that energy useful.
Beyond the obvious uses of energy for lighting, cooking, heating, and basic home appliances, uses for purposes that might bring economic development to an area are slow to emerge without institutional mechanisms in place that are conducive to fostering entrepreneurial activity and uses of energy for activities that can generate income. Without the expansion of energy uses to activities that generate income, the economic returns to energy providers are likely to remain unattractive in poor and dispersed rural markets.
Significant success has been achieved with small pilot projects to improve energy access in some rural areas and among poor communities in urban areas. But subsequently, less thought is focused on how to scale-up from these small pilot and demonstration projects to market development and meeting the needs of the larger population.
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