Collaborative Frameworks for Chronic Illness, Research Paper Example

Abstract

The development of a collaborative framework for decision-making is essential for parents of children who face challenging chronic illnesses because these conditions often limit routine activities and other traditional adolescent behaviors. It is important for parents and their children to recognize limitations but to also determine how to improve living conditions and wellbeing when chronic illnesses are present. Collaborative efforts may lead to more effective decision making and improved outcomes for children with chronic illness. Parents should reach out to other parents and professionals in an effort to improve decision-making and child wellbeing for the improved management of chronic illness.

Introduction

Collaborative decision-making between parents and children is a challenging process, and is even more difficult when children have chronic illnesses to manage on a daily basis. Communication between parents and children is poor and is often distorted due to the overprotective nature of parents and their perspectives regarding chronic illness. Therefore, an evaluation of collaborative decision-making is worthy of consideration in improving the ability of children with chronic illnesses to gain greater independence to make decisions on their own. This is an important opportunity for children to experience a greater sense of comfort and wellbeing, in spite of their condition.

Description of the Study

A research study conducted by Miller (2009, p. 249) addressed the importance and implications of parent-child decision making in a collaborative manner. This study explored the different constructs associated with chronic illnesses in children between the ages of 8 and 19 and which steps are required to improve outcomes for children with a variety of conditions, such as type I diabetes, cystic fibrosis, or asthma (Miller, 2009, p. 249). A focus group and interview effort was conducted and included parents of children with these conditions to determine if collaboration provides the desired benefits in managing these illnesses more effectively (Miller, 2009, p. 249). These efforts were evaluated in the context of their effectiveness in improving collaborations with parents and their children to expand decision-making capabilities (Miller, 2009, p. 249).

Miller’s qualitative study was designed to emphasize parent-child collaborative decision making (CDM) and its ability to improve independent decision-making capacity for children with chronic illness (2009, p. 249). This study attempted to capture behavioral constructs and other factors which parents must develop and maintain so that children feel more comfortable in making decisions on their own, using parents as a guide in this process (Miller, 2009, p. 250). These efforts demonstrate that it is essential for parents to reduce their level of anxiety and perhaps frustration with their child’s chronic condition so that they better communicate and encourage some degree of independence, in spite of any limitations that this condition might introduce into their lives (Miller, 2009, p. 250). In the past, CDM has not been a primary focus of research, and therefore, it is believed that this area could benefit from further evaluation and consideration (Miller, 2009, p. 250).

The study method involved children with asthma, cystic fibrosis, and type I diabetes, in addition to parents of children with these conditions, some of which overlapped and others of which who did not (Miller, 2009, p. 252). Focus groups were utilized for children with conditions other than cystic fibrosis, and the latter group was engaged in individual interviews because of infection-related risks (Miller, 2009, p. 252). An interview template was created for the focus groups and interviews as a guide in directing these conversations, but the discussion purposely did not include the term collaboration (Miller, 2009, p. 252). A specific coding structure was used to decipher the data obtained in the interviews and focus groups and to establish results (Miller, 2009, p. 252).

The study results demonstrated that as children mature and become more independent, they are more likely to seek guidance regarding individual decision-making in an effort to make decisions on their own more frequently (Miller, 2009, p. 261). The level of engagement between parents and children varies and is based upon a number of conditions, including but not limited to factors such as degree of illness severity and level of comfort with independent decision making (Miller, 2009, p. 261). There are varying degrees of control over information that are exercised between parents and children, and these factors should be addressed in making decisions effectively which have a positive impact on both parents and their children (Miller, 2009, p. 261). This study reflects a capacity to share knowledge and information to achieve mutually beneficial outcomes for both parents and their children (Miller, 2009, p. 261).

Critique of the Study: Strengths and Limitations

This study provides a relatively unexplored research hypothesis regarding collaborative decision making between parents and children with chronic illness. Many parents find that they are unable to fully accept and embrace chronic illness and may place challenging expectations and an overly protective nature on their children. In many ways, this is not beneficial to these children because they already face challenges with their illness that are difficult to manage and overcome, not to mention protective parents and limited decision-making potential. The study’s attempts to explore collaborative decision-making more proactively shed some light on the relationship between parents and their children and what steps are necessary to expand independence and decision-making for these children. A key strength of the study is a closer evaluation of these circumstances and an open dialogue regarding perceptions and observations made between and among parents and their children. These efforts are important indicators of how to engage children more effectively and to allow them to mature and make decisions of their own accord, particularly when they are associated with chronic illness. In the context of this population group, the study is valid and appropriate to meet the needs of parents and children who face chronic illness, as the data retrieved is both practical and appropriate for this group. In addition, the study method is reliable because it can be duplicated with other groups in different settings to have similar results (Bouma et.al, 2009, p. 91).

On the other hand, a small focus group and interview process is not necessarily applicable to all parents and children who experience chronic illness. Other important factors must be taken into consideration, such as cultural differences, customs, and expectations, which may influence the level of freedom that children have in some settings. This also impacts their ability to express themselves and openly confide in their parents to make independent decisions, as they might be fearful of what might happen to their children if they make independent decisions in this manner. In addition, the study was broad in scope and emphasized a number of chronic conditions and patients with varying degrees of symptoms and illness severity (Miller, 2009, p. 249). This limits the opportunity of the research data to be applied to specific groups and conditions, which may be necessary under some conditions (Miller, 2009, p. 263). Finally, it is likely that under some conditions, parents and children might view the collaborative decision-making process in a different context because of the specific circumstances and dynamic within each family (Miller, 2009, p. 263). This poses challenges for applicability to larger groups and is not likely to serve as a representative sample.

Implications of the Study for Nursing Practice

Children who face chronic illness and their parents typically require a more advanced and consistent level of care and treatment than children without chronic conditions. It is important to recognize that these children are often limited in the types of activities in which they participate, in addition to the requirement to preserve their health through various management techniques. It is necessary for nurses working with this patient population to recognize that collaborative efforts are likely to beneficial in shaping successful treatment outcomes and wellbeing for these patients, including such areas as the recognition of symptoms and regular visits to the office (Miller, 2009, p. 262). These efforts may also provide children with a greater understanding of their condition and the limitations that they face, as well as the opportunities that they have to try new things and to take small risks that will not detrimentally impact their health (Miller, 2009, p. 262). These efforts are likely to produce effective results for parents and their children, particularly when communication is open and honest regarding symptoms and the illness as a whole (Miller, 2009, p. 262). These efforts will also contribute to the development of new ideas and collaborations to improve the lives of these children through greater independence and a share in the decision-making process (Miller, 2009, p. 262).

Issues Concerning Implementation in Practice Settings

The implementation of this research study in nursing practice settings is challenging and complex in many ways. There is a definite advantage to exploring the CDM dynamic between parents and their children because this demonstrates new opportunities to share ideas and to promote independent decision-making for these children, as well as improved wellbeing and illness management over time. Nurses may be particularly effective in leading these discussions and promoting child independence in decision-making, as they possess knowledge of their clinical prognosis. This knowledge is likely to encourage them to influence parents and to enable them to allow their children to make decisions more independently. At the same time, these efforts will encourage parents and their children to engage in a more open dialogue, not only in the clinical setting, but also in the home environment.

Finally, the implications of this study for nursing practice are important because they shed some light on how nurses should respond to and address questions from parents regarding their understanding of the chronic illnesses which impact their children. These efforts will encourage the development of new ideas and concepts that will facilitate parent-child interactions in a productive and meaningful manner. This is a unique opportunity to engage parents and children regarding issues that are very important yet are inhibiting and challenging on many levels. Nurses are likely to be effective contributors in the engagement process through the development of support groups to bring parents and children together who face similar circumstances. Furthermore, nurses have a great opportunity to recognize when parents face difficulties in letting go of their children and in allowing them to be successful and more independent in making decisions that will positively impact their health and will encourage them to take small risks under controlled conditions.

References

Bouma, G.D., Ling, R., and Wilkinson, L. (2009).The Research Process. Don Mills, Ontario: Oxford University Press.

Miller, V.A. (2009). Parent-child collaborative decision making for the management of chronic illness: a qualitative analysis. Families, Systems & Health, 27(3), 249-266.