4.1 Comparison with Previous work
As already cited previously, there are few papers that focus on the pediatric acute homecare understanding and the families’ characterization. The following provides the information described in previous work.
Sartain et al. report a qualitative study aimed to compare 40 families’ experiences of homecare and hospital care. The project is based on a nursing acute homecare program and the trial includes children with only three types of symptoms: pyrexia (viral infection, tonsillitis), breathing difficulties (asthma, chest infection, croup), and diarrhea. The paper provides information on the parent’s and the patient’s view by interviews. User’s satisfaction, effects on family, financial costs, and relationship with professionals are studied. Main results are increased reassurance and confidence to parents in the specific case of acute nursing needs (no pediatric need in any case)14.
Bryant et al. do a systematic review focused on inpatient versus outpatient parenteral antibiotic treatments at home, including efficacy, safety, satisfaction, and cost. Principal findings related to satisfaction are increased opportunity to keep up with school or work, greater privacy and comfort, improved quality of sleep and appetite and increased time to spend with family15.
Cabrera et al. refer to a program similar to ours, that includes pediatric and nurse care and treats a great variety of pathologies. This study provides much information on pathologies and treatments received at home, and few information on perceived safety, satisfaction, and preference over conventional hospitalization. Nevertheless, it does not include the specific questions asked to caregivers, nor precise results. Greater comfort, privacy, ease of familial organization and perception of earlier recovery are the main aspects to consider in this paper16.
Young et al. have reported a full qualitative study addressed to children with subacute needs, based on interviews to 16 families. However, their program is based on tele-homecare (vital signs monitors, two-way videoconferencing connecting home and hospital, and community-based-homecare nurses – not hospital nurses, nor pediatricians). Principal findings suggest that care at home during the subacute care phase can be as good as in hospital, that families prefer to be at home, and that tele-homecare facilitated the transition home17.
Previous work on our program, SJD a Casa, is already reported, the aim being the pilot test evaluation to determine the program’s implementation in the hospital’s portfolio. Although the results were excellent (a level of care scored overall Excellent and a desire to repeat the experience if needed in all the families)18, the study has its limitations: restricted survey and small sample.
Note that none of these studies is like ours because: (1) the aim is not the families’ characterization; or (2) although it reports a full families’ description, the program’s characteristics are different, according to pathologies treated and homecare staff.
4.2 Actual work
Social characterization of families has permitted to identify a predominant profile of caregiver: Spanish parent, with college instruction, satisfactory household economy, and adequate family and social network. Although these results may constitute a bias because of the experiment design (participants’ voluntariness to respond the surveys), it is interesting to remark that caregivers in our program must get involved in nursing techniques, some of them quite challenging, with short time of empowerment. Thus, patients with fewer family resources may encounter difficulties entering the program.
Focusing on the reasons to choose acute hospital-at-home, economic burden being admitted in hospital does not constitute a motivation in most of the cases. Nevertheless, more than a half of participants admit family’s economic burden in hospital is higher than usual. Therefore, we may conclude that household economy can influence on the decision. Other expected modulating factors when selecting homecare (such child’s anxiety, having had a previous hospital admission or having experienced some traumatic event in a hospital) are infrequent and do not seem to interfere with the homecare choice.
It is valuable to focus on the caregiver’s experience view. Although regarding workload families affirm to have had less work than initially expected; when analyzing the caregiver’s well-being, results are worse than expected in the preadmission survey. This is remarkable, as it may suggest symptoms of fear, tiredness and anxiety being at home. It is also noticeable that, despite 18 families answered the workload was more than expected, only 5 would not repeat homecare because of it. One may think that families’ desire for the patient to stay at home along with the feelings of fear or anxiety could lead eventually to caregiver’s burnout.
Moreover, this study corroborates satisfactory results referring to the acute hospital-at-home experience, as already described in literature15161814. Rating is better in hospital-at-home in comparison with conventional hospitalization, being these results also consistent with previous work151714. We can assume it may be due to a closer relationship between caregiver and health staff and because of the comfort being at home.
This paper offers a general vision on the socioeconomic situation of families admitted in an acute pediatric hospital-at-home program, and on the actual caregivers’ and child’s experiences. It would be of interest to center further studies in specific social aspects as single-parent families or immigrant parents and introduce the health staff’s view towards acute homecare.
Limitations in this study are: (1) the previously mentioned bias because of the experiment design and (2) the lack of inpatient hospitalization’s socioeconomic information to compare properly with homecare.