The Decision-Making Process of Parents Choosing Home Care for Technology-Dependent Children and Related Factors

Research Article

Austin J Nurs Health Care. 2016; 3(2): 1031.

The Decision-Making Process of Parents Choosing Home Care for Technology-Dependent Children and Related Factors

Kanaizumi S* and Ushikubo M

Department of Nursing, Gunma University Graduate School of Health Sciences, Japan

*Corresponding author: Kanaizumi S, Department of Nursing, Gunma University Graduate School of Health Sciences, 3-39-22 Showa-machi, Maebashi, Gunma 371- 8514, Japan

Received: August 04, 2016; Accepted: November 08, 2016; Published: November 10, 2016


It is often challenging for parents to decide whether to provide care at home for a child with a chronic condition who requires life-support technology, and little is known about how parents make this difficult decision. This qualitative descriptive study aimed to explore the decision-making process of parents choosing home care for their technology-dependent child and the factors influencing this decision. Data were collected using semi-structured interviews with 11 parents whose children were technology-dependent and had been discharged from hospital. Throughout the decision-making process, conflicted or wavering feelings and various anxieties were present in the parents. Ultimately, accepting the child’s state and/or feelings of affection toward the child led parents to decide to provide home care. This process was affected by various factors, including what other people said or did, and deciding to provide home care was represented by one or two of the following three categories: [feeling of “let us try”], [feeling of “it looks like it would work”], and [“being prepared for the possibility of the child’s death”]. These findings demonstrate that the decision-making process is varied and complicated. Nurses and other medical professionals should assess parents’ conflicted feelings, assist in clarifying the cause of their anxieties, promote parent-child attachment, and help facilitate the child’s development to support parents during the decision-making process.

Keywords: Decision making; Parent; Technology-dependent children; Home care


Advances in medical technology and health care now allow technology-dependent children with chronic diseases to receive care at home [1-3]. Technology-dependent children are defined as those who require both lifesaving medical devices to compensate for a loss of vital body functions and ongoing nursing care to avert death or further disability [4]. Types of technology dependency vary from procedures such as intermittent urinary catheterization to continuous mechanical ventilation. Home care brings normalization, a nurturing home environment, an enhanced quality of life, and improved development for such children [5-7]. Improved development for children receiving care at home and from the community has been reported in the literature [7-10]. However, providing home care to a child with a complicated condition who depends on technology is often challenging for parents, because in the home setting, medical care cannot always be provided by health professionals.

One of the prerequisites for successful home care is that the parents actually want the child to be at home [7]. Studies have shown that families sometimes have difficulty imagining life at home with the child and that they often fear caring for the child at home [11- 14]. However, the decision-making process of parents regarding the transition of a child from the hospital to the home remains largely unexamined.

Carnevale et al. [15] explored the experiences of families with a child who required assisted ventilation at home and found that many parents were ambivalent with regard to making life support-related decisions. They also found that parents sometimes asked themselves whether they made the right decision; this was commonly resolved by realizing that life without their child would be unthinkable. Although the experiences of families caring for children at home have been reported [4,6,15-18], to the best of our knowledge, no studies regarding the experiences of parents who decide to care for technology-dependent children at home have been conducted in the Western literature. In Japan, a small body of literature has examined the decision-making process of parents regarding the transition of their child from the hospital to the home. Suzuki [19] analyzed parents’ perceptions of choosing home care for children dependent on mechanical ventilation and found a “gap” between the perceptions of parents and health care providers; this gap gradually altered parents’ perceptions of health care providers from “professionals who keep our child alive and help raise them” to “professionals who merely keep our child alive when necessary”, leading to the feeling that they needed to make a decision. Consequently, home care seemed to be the only viable choice. Suzuki also reported that awareness of the child’s response, confidence in care, and care burden were associated with their struggle to gain sufficient information before making a decision [20].

Therefore, anxieties or fears among parents about caring for their child at home have been identified, and the experiences of parents providing home care to their child after discharge from hospital have been explored. However, few studies have been conducted on the parents’ decision-making process and related factors in regard to choosing to provide home care. Facilitating family strengths and supporting the decision-making process are considered essential roles of nurses [18], which suggests that support should be offered based on a better understanding of parents’ decision-making processes.

The objective of this study was to examine the decision-making processes and influencing factors of parents who chose home care for their technology-dependent child.

Materials and Methods

A qualitative descriptive design was used to explore the experiences of parents deciding to provide care for their technologydependent child at home.

Selection of participants

The participants in this study were parents whose technologydependent child had been discharged from hospital in less than three months. Participants were recruited from two tertiary hospitals in an urban region of Japan. The inclusion criteria were as follows: a) children with group I-III dependence on a life-sustaining mechanical device(s), such as mechanical ventilation, prolonged intravenous administration of nutritional substances or drugs, tracheostomy care, suctioning, oxygen support, or tube feedings, as defined by the Office of Technology Assessment [4]; b) children who had been hospitalized due to congenital anomalies, perinatal problems, or early neonatal illness; and c) children who had been discharged to their home for the first time.

Data collection

Semi-structured interviews were conducted from 2008 to 2010 at the participant’s homes. The interview questions were composed of the following five parts concerning the parents’ decision-making process and influencing factors: 1) course of hospitalization until the choice to provide home care was made; 2) factors that were thought to influence the decision to provide home care from the parents’ perspectives; 3) what parents had imagined life at home with the child would be like; 4) parents’ perceptions about technology dependency; and 5) the child’s development. Finally, the participants were asked to comment freely about any other issues concerning the care of their child. All interviews were recorded.

Data regarding the child’s age, diagnosis, duration of hospitalization, type of dependency, level of consciousness, and performance of activities of daily living were collected from medical charts.

Data analysis

In this exploratory study, data were analyzed using a qualitative descriptive method [21] that aimed to clarify the actual situation from the emic (“insider’s”) viewpoint. Analyses were carried out as follows. All interviews were transcribed verbatim and coded after careful review. In the coding process, the participants’ own words were used as much as possible. Codes were classified through a comparison of differences or similarities and then divided into sub-categories, which were further abstracted to form categories and core categories. Next, the associations between categories were examined in consideration of cause, context, contingencies, consequences, covariance, and conditions [21,22], and schematized with respect to the flow of time.

A constant comparative method [21,23] was utilized to ensure trustworthiness. First, comparisons were carried out within the cases, and then across interviews, going back and forth between codes, sub-categories, and categories. The categorization was discussed with researchers experienced in home care nursing. Transferability was secured by intense description, including direct quotations of the participants in the codes, sub-categories, and categories. Data analysis was supervised by an expert in home care nursing research.

Ethical considerations

All parents were informed of the purpose of the study, the study methods, and the content of the data to be collected, and that the confidentiality of all participants would be maintained and the study results would be submitted for publication in an academic journal. The parents were also informed that their participation in the study was strictly voluntary. This information was explained orally and accompanied by an explanatory handout that was then given to each parent. Participants signed a consent form if they agreed to participate. All interview data were anonymized and reviewed repeatedly to exclude any data that could identify individuals. This study was approved by the ethics review committee of the authors’ university.


Finally, 11 parents (six mothers and five fathers) of six technologydependent children participated in the study. Interviews took place from the 7th to 75th day after the child’s discharge from hospital. The characteristics of the children are shown in (Table 1). Four children were receiving tube feedings, four required tracheostomy care, and three were dependent on mechanical ventilation. The age of children at discharge ranged from 3-56 months.