ABSTRACT
BACKGROUND: Funders, academic publishers and governance bodies increasingly require research to involve patients and the public. This also enables nurse researchers to increase the visibility of scholarly nursing roles, which are poorly understood by the public. There are different approaches to involvement, and a wealth of guidance about how it can and should be implemented. Less is known about how it should be done in the context of a nursing PhD. AIM: To discuss the experiences of the authors' nursing research group in involving patients and the public in PhD research, reflect on the benefits to be gained from doing so, and highlight considerations for those planning to involve patients and the public in their doctoral research projects. Discussion It is essential to decide in advance of a study who you will involve, how to reach them and why you are involving patients and the public. Some potential benefits of involvement are: more accessible documentation, refined methods and better research outputs created in collaboration with patients and the public. CONCLUSION: Patients and the public should be involved in nursing PhD projects. Not only does this improve the quality of the research and raise the profile of nursing research, but it provides the opportunity for students to learn skills that they can develop further throughout their academic careers. IMPLICATIONS FOR PRACTICE: Obtaining high-quality patient and public involvement is an important skill for nurse researchers. The first steps in acquiring this skill should be taken during research training.
Subject(s)
Education, Nursing, Graduate , Nursing Care , Nursing Research , Humans , Learning , Research PersonnelABSTRACT
OBJECTIVE: Family caregivers in West Java, Indonesia, care for their family members at home or in a shelter with limited sources. This study aims to establish the needs of family caregivers when providing informal care to family members with cancer in the resource-challenged context of West Java, Indonesia DATA SOURCES: This cross-sectional survey involved family caregivers, using convenience sampling. Data were collected using the Supportive Care Needs Survey-Partners and Caregivers, translated into Indonesian. Descriptive statistics were computed and reported. We recruited 220 individuals. Our typical participant was a married (49.5%), housewife (35.5%) with primary school level education (35.6%). Just more than half the sample were men (50.9%). Our participants had a mean age of 40.2 years, had been caregivers for a mean 1.2 years, and traveled a mean 164.7 km to accompany patients to medical appointments. Our participants reported unmet supportive care needs in all domains, except for sexuality. The topmost unmet need was finding out about financial support CONCLUSION: Our sample struggled to balance their living allowance and budget for cancer treatment. They also need information to care for their family. The need for financial support for patients and family caregivers was the most important finding. Our findings will be valuable in planning ahead to enhance the status of supportive and palliative care provided in West Java, Indonesia. IMPLICATIONS FOR NURSING PRACTICE: Flexible and comprehensive nurse-led interventions should be developed to support family caregivers fulfill their roles and sustaining their quality of life.
