Coordinated hospital-home care for kidney patients on hemodialysis from the perspective of nursing personnel1

OBJECTIVE: To examine, from the nursing perspective, the needs and challenges of coordinated hospital-home care for renal patients on hemodialysis. METHODS: A qualitative analysis was conducted with an ethnographic approach in a hemodialysis unit in San Luis Potosi, Mexico. Semistructured interviews were conducted with nine nurses, selected by purposeful sampling. Structured content analysis was used. RESULTS: Nurses recounted the needs and challenges involved in caring for renal patients. They also identified barriers that limit coordinated patient care in the hospital and the home, mainly the work overload at the hemodialysis unit and the lack of a systematic strategy for education and lifelong guidance to patients, their families and caregivers. CONCLUSIONS: This study shows the importance and necessity of establishing a strategy that goes beyond conventional guidance provided to caregivers of renal patients, integrating them into the multidisciplinary group of health professionals that provide care for these patients in the hospital to establish coordinated hospital-home care that increases therapeutic adherence, treatment substitution effectiveness and patient quality of life.


Introduction
In Latin America, the prevalence of chronic kidney disease (CKD) has increased 6.8% annually over the past six years (1) . Mexico is one of the most affected countries, where more than 100,000 people have CKD, and the mortality rate is 10.5 per 100,000 (2) .
For people with CKD, one of the chosen replacement therapies for renal function is hemodialysis (HD), which is considered a highly invasive treatment and is one of the more costly chronic therapies in specialized care, Various studies on the care of renal patients on HD have been reported. Studies with a quantitative approach mainly overlook analysis of quality of life and the needs of people subject to this replacement therapy (3)(4) to assess their functional capacity and physical activity requirements (5) .
In contrast, qualitative studies analyze and interpret experiences of those with CKD receiving HD therapy to assess and understand their life experiences, meanings and impact of the disease on their lives (6)(7) . Several studies have assessed the experiences of patients in particular on some specific symptoms of CKD and the effects of HD therapy, such as fatigue or pain (8)(9)(10) , along with prescriptions of medical treatment, for example fluid restriction (11) .
Some ethnographic studies have investigated the perceptions of the various actors involved in hospital care of patients on hemodialysis. For example, the study by Fujii (12) describes factors that influence integration of care for patients with hemodialysis from the perspective of health personnel. The Allen study (13) presents the perspective of patients regarding failure of care during their stay at the hospital for disease management.
Very few studies analyze patient perception regarding care practices in the home, such as the central venous catheter (14) . Study publications in this region that inquire about the multiple related aspects of the requirements and experiences of care in the home were not identified, let alone studies that consider the continuous and coordinated hospital-home monitoring process of these patients.
This study aimed to examine, from the perspective of nurses in a hemodialysis unit (HDU) in social security services, the needs and challenges of coordinated hospital-home care for comprehensive care of renal patients on HD.

Methods
This study presents results from a qualitative evaluation (15)(16) of care for renal patients on HD from the perspective of health personnel (nurses, doctors, psychologists, nutritionists, social workers, physiotherapists), the patients and their family.
The research was conducted using an ethnographic approach (17)  First contact with participants was established at the beginning of the study. At a face-to-face meeting, the significance of the research project was communicated to them as collaboration between the clinic and the institution that the principal investigator belongs to, along with the objectives of the study and the interest of the interviewers to obtain information for compliance. Participant observations were also made by KP, who was involved in daily activities of the HDU for care of the renal patients, with the purpose of knowing and taking into consideration the context in which hospital care is given and the characteristics of patients who come to receive care. Field notes, methodologies and analytics were prepared for records of field work and data analysis (18) . Participants were given a questionnaire to obtain personal data.
To analyze data, structured content analysis was conducted (19) , which allowed subjective interpretation of the content of texts through systematic steps of coding and identification of themes that enable following an presented to participating nursing personnel in the study and a few others who work in the HD unit to receive their feedback, which confirmed the findings (20) .

Theme Questions
Perspective on kidney disease and its care In your view, what is life like for people with kidney disease on hemodialysis?
What are the elements that should be included in the care of renal patients on hemodialysis? What is the ideal care required by a renal patient on hemodialysis? How do you value the services offered at this clinic to renal patients on hemodialysis?
Professional-patient relationship What is the relationship like between professionals and renal patients and their families?
Professional-family relationship Tell me about an experience you had with patients or their families that has been important to you.

Needs of home care
How organized is the care that is provided to patients at the hemodialysis unit? How is this care related to care required by the patient at home? How is communication between different professionals involved in patient care and families established? If you could improve coordination and workflow between professionals involved in the care of kidney patients, what would you change?
Limitations on patient care in HDU associated with home care How do you think the care received at home is reflected in the care provided in the hospital to the renal patient on hemodialysis? What would you propose to improve patient care provided in the home by families and caregivers? What do you think are barriers to coordinating care provided in the hospital and the home to renal patients on hemodialysis?

Discussion
The study findings show the complexity of therapeutic  to take that responsibility and exercise their functions effectively. Several studies refer to the significance of this care and its relationship to quality of life for renal patients on hemodialysis (6)(7)22) ; some authors have reported the significance of active participation of the patient and their caregivers in the care process required in hemodialysis treatment, along with communication between patients, caregivers and health personnel (4,23) .
Other studies have investigated the perspective of professionals and patients on hospital care (12,13) , and findings are consistent with this study in regards to limitations of human resources, the long waiting times and difficulties in coordinating the professionals involved in the care of these patients.
Moreover, the need for guidance, education and constant support from the health team for the patient and the family so that they can more easily accept and face radical lifestyle changes has already been documented (3,5)

Conclusion
The results of this study highlight the significance of establishing coordination between health professionals and caregivers to maintain therapeutic compliance in the home and to establish a multidisciplinary support network for both actors, which will facilitate the nursing staff in caring for the patient in the HD room and could reduce demand for hospital services from complications associated with the lack of home care. Thus far, actions to educate and guide caregivers of renal patients do not consider establishing a coordinated strategy that integrates caregivers in a multidisciplinary team and provides them tools in terms of knowledge, skills and strategies to face the difficult burden of home care for these patients.