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CHAPTER 21 Reconceptualizing Normal: From Concept

Building to Proposal Development

Shelley J. Greif

The idea of studying and understanding challenges faced by parents caring for a child after traumatic brain injury (TBI) grew directly out of my work provid- ing care coordination, education, and support caring for children and families who had recently sustained TBI. This practice was within a state program for children with special healthcare needs as well as brain and spinal cord injury. I worked for many years with the broad population of children with special healthcare needs and families. However, I found when working with TBI sur- vivors and families there was a unique depth of parental involvement and commitment that was different from previous experience. I wanted to better understand the experience of those parents in order to inform and improve practice in the fi eld. The structure and process that was used in the develop- ment of this concept is described in detail in Reconceptualizing Normal (Greif, 2014). This chapter briefl y summarizes the concept development and then describes the process used in moving from concept building to proposal devel- opment for my doctoral dissertation.

■ FOUNDATION OF CONCEPT BUILDING

The concept reconceptualizing normal was derived from practice. The prac- tice story situation was about Maria, who sustained a severe TBI at the age of 16, when she was struck and dragged by a truck while riding a bicycle. The story describes the experience of Maria and her mother as they moved through trauma care, inpatient rehabilitation, and outpatient services, including inte- gration into educational and community settings.

■ THEORETICAL LENS

The Theory of Uncertainty in Illness (Mishel & Clayton, 2008) was used as a lens to shape reconceptualizing normal. This theory describes uncertainty in

Copyright Springer Publishing Company. All Rights Reserved. From: Middle Range Theory for Nursing, Fourth Edition DOI: 10.1891/9780826159922.0021

428 I I I . CONCEPT BU ILD ING FOR RESEARCH—THROUGH THE LENS OF M IDDLE RANGE THEORY

situations where the impact of illness is unpredictable or there is insuffi cient information to determine the meaning of the event. In a study on adjustment of families with members who had heart transplants, Mishel and Murdaugh (1987) found that adjustments were continually being made and belief of return to normal was gradually eroded. They described the process of adjust- ment as one which includes an awareness of the need to redefi ne what is normal.

■ LITERATURE REVIEW

TBI is frequently referred to as the “silent epidemic” because the complications from TBI, such as changes affecting thinking, sensation, language, or emo- tions, may not be readily apparent. Each year, TBIs contribute to a substantial number of deaths and cases of permanent disability. Recent data show that, on average, approximately 1.7 million people sustain a TBI annually (Faul, Xu, Wald, & Coronado, 2010). Children from birth to 4 years of age, teenagers 15 to 19, and adults over the age of 65 are most likely to sustain a TBI. Furthermore, almost half a million emergency department visits are made annually by chil- dren from birth to 14 years.

Consistent throughout the literature is the importance of family functioning. Review of qualitative research suggests that what is central to successful adap- tation and community reintegration is the family’s ability to reconceptualize what is normal to change expectations about how they and their child will live and experience daily activities (Duff, 2002, 2006; Kao & Stuifbergen, 2004; Mishel & Murdaugh, 1987; Roscigno, 2008; Wongvatunyu & Porter, 2008a, 2008b).

■ CORE QUALITIES/CONCEPT DEFINITION/MODEL

There is persistent uncertainty associated with how a child will recover from brain injury. Families develop basic competencies and patterns that foster growth, protect their child, and enable recovery. In coping with uncertainty, they demonstrate fl exibility and draw on unconditional love that enables them to get to know their child again and to develop new approaches for everyday living. Willing openness to know anew (Roscigno, 2008; Wongvatunyu & Porter, 2008b), intentional fl exibility (Duff, 2002, 2006; Kao & Stuifbergen, 2004), and unconditional love (Kao & Stuifbergen, 2004; Wongvatunyu & Porter, 2008b) are the core qualities of reconceptualizing normal. Reconceptualizing normal is willing openness to know anew through intentional fl exibility and uncondi- tional love (Greif, 2014).

Figure 21.1 illustrates the process of reconceptualizing normal after TBI.

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Unconditional love

Intentional flexibility

W illing openness

Know anew

FIGURE 21.1 Model of Reconceptualizing Normal.

■ RELATIONSHIP OF THE MODEL TO THE RESEARCH PROPOSAL

In continuing to develop and refi ne the concept of reconceptualizing normal, Story Theory provided an approach that intuitively resonated with exploring and understanding the phenomenon. Story Theory was developed by Smith and Liehr to provide a story-centered structure for guiding nursing practice and research (Smith & Liehr, 2014). The theory recognizes that listening to per- sons’ stories about their health experience is a fundamental nursing process that allows people to express what matters to them. Smith and Liehr (2014) describe story as the “narrative happening of connecting with self-in-relation through intentional dialogue to create ease.” In this description story incorpo- rates narration of events as remembered and infuses unique personal perspec- tives that shape meaning and guide choices in the moment.

■ EXEMPLAR PROPOSAL

The purpose of this study is to understand how parents manage the care and community reintegration of their child who has experienced a TBI over time. This study uses a mixed-method approach, exploring critical turning points for parents as they move from “normalcy” prior to and then an altered health tra- jectory following their child’s TBI. Health challenges that parents experience and their approaches for resolving health challenges are also explored.

The population of interest is parent caregivers of children who had a mod- erate or severe TBI (at least 2 years ago) when they were between the ages of 12 and 18 years. This population is selected for several reasons. It is the age group most at risk and is the largest percentage of children referred for TBI. Adolescents and young adults, who have already begun the developmen- tal processes of independence, are beginning to gain the skills for transition to adulthood. The signifi cant change in their needs following TBI, including dependence and behavioral and cognitive needs, puts them and their families at high risk for dysfunction, stress, and depression.

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The research questions for the qualitative component are:

• What are the dimensions of the health challenge of caring for a child who has had a moderate-to-severe TBI?

• What are the turning points that mark change over time for parents of children who have experienced a TBI?

• How have parents managed the challenges they face?

The research questions for the quantitative component are:

• How do parents assess the quality of life for their child who has experienced a TBI?

• How do parents self-appraise management of everyday living following their child’s TBI?

■ BACKGROUND AND SIGNIFICANCE

Studies of children’s cognitive and functional recovery following TBI identify factors that infl uence outcomes, including pretrauma profi le, family character- istics, and severity of injury. None of these factors or variables exists in isola- tion. Lack of recognition of need by parents or caregivers has been identifi ed as one barrier to improved outcomes, with the recommendation that primary care providers be alert to unrecognized need and provide appropriate referrals (Slomine et al., 2006). Children with preexisting psychosocial conditions such as learning disabilities, behavior disorders, and/or low socioeconomic status are more likely to report unmet needs. It has been suggested that intensive nurse visiting to assess needs and provide support for cognitive and social interventions may improve outcomes for both the family and the child (Keenan, Runyan, & Nocera, 2006). Findings from quantitative research on children’s TBI suggest the importance of inquiring into the care and experience of chil- dren who have had TBIs. In addition, the experience of families is warranted, given the role that families play in their child’s outcomes.

This research is an attempt to understand and appreciate the impact of pedi- atric TBI through the lens of Story Theory, using a mixed-method design for data collection and analysis. It is expected that this research will: (a) inform nursing practice with respect to understanding the experience for families in managing the care and community reintegration of their child; and (b) high- light opportunities to support family management and strengthening.

■ THEORETICAL FRAMEWORK

Story Theory was developed to provide a story-centered structure for guid- ing nursing practice and research, recognizing that stories are a fundamental

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dimension of the human experience. Smith and Liehr (2014) identifi ed three interrelated concepts of the theory: intentional dialogue, connecting with self- in-relation, and creating ease. Intentional dialogue is “purposeful engage- ment with another to summon the story of a complicating health challenge” (p. 230). It is the nurse’s intentional presence as a way of coming to know the other person. Connecting with self-in-relation is “the active process of recog- nizing self as related with others in a story plot” (p. 231), and in Story Theory, connecting with self-in-relation incorporates personal history and refl ective awareness. Creating ease is a “release experienced as the story comes together in a movement toward resolving” (p. 232). These three concepts interrelate with each other in a dynamic way to describe story as “a narrative happen- ing of connecting with self-in-relation through intentional dialogue to cre- ate ease” (p. 234). The theory proposes concept-related processes named as components of the theory method: intentional dialogue about a complicat- ing health challenge, connecting with self-in-relation through developing story plot (high points, low points, turning points), and creating ease through movement toward resolving the complicating health challenge. The gathering of stories is relevant to both nursing practice and research. The development of Story Theory and method offers an opportunity to embrace story-gathering as an intentional intervention as well as a tool for research expanding nursing knowledge and wisdom.

■ METHOD

Design

This study utilizes a mixed-method approach. In the qualitative component, the following experiences were explored: (a) dimensions of the health chal- lenges faced by parents caring for a child after a TBI; (b) critical turning points for parents as they face the health challenges; and (c) approaches for move- ment toward resolving health challenges. In the quantitative component, par- ents’ perceptions of their child’s quality of life and their own ability to manage their child’s health challenge are also explored. Mixed methods refers to the combination of qualitative and quantitative research, and is used when the two approaches complement one another and lead to a more comprehensive understanding of the phenomenon than one or the other could do alone.

Story inquiry method is used to gather and analyze data about health chal- lenges, approaches for resolving health challenges, and turning points as parents move along to reconceptualize normal. These qualitative data are enhanced with a quantitative study component. The Pediatric Quality of Life Inventory (PedsQL) Measurement Model is used to assess the child’s quality of life and the Family Management Measure (FaMM) is used to assess parents’ ability to manage their child’s health challenge.

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Qualitative Approach

According to Creswell (2007), “narrative research is best for capturing the detailed stories or life experiences of a single life or the lives of a small num- ber of individuals” (p. 55). Narrative research draws from the humanities, including anthropology, literature, psychology, sociology, and history, and is well suited for telling the stories of individual experiences. The procedures for conducting narrative research include collecting information about the con- text of the stories, which are situated within the participants’ personal experi- ences, their culture, and their historical contexts; analyzing the participants’ stories; and then “restorying” them into an organized framework. It also calls for collaborating with participants by actively involving them in the research. Creswell noted that in narrative research, there is a relationship between the researcher and the researched in which both parties learn and change in the encounter. This relationship allows the parties to negotiate the meaning of the stories, adding a validation check to the analysis (Creswell, 2007).

Story narrative encourages and allows the participant to articulate expe- riences that are meaningful, offering the researcher an opportunity to fully understand. In this case, how families moved through the experience of having a child with a TBI is the focus of inquiry. This approach is particularly valuable in uncovering the life-changing dimensions of being thrust unexpectedly into an intensive and complex system of health and related care needs. Engaging in dialogue and eliciting stories that are meaningful to participants allows for the expression of whatever is most important and vital for the care of their child, and allows for consideration of ways to incorporate care into their daily lives.

STORY INQUIRY METHOD

Story inquiry method is used to gather and analyze data about health chal- lenges, turning points, and movement toward resolving health challenges. Story inquiry method derives from Story Theory and is an approach for sys- tematically gathering and analyzing stories with the intention of informing nursing knowledge development (Liehr & Smith, 2007). Liehr and Smith (2007) proposed fi ve inquiry processes: (a) gathering stories about a complicat- ing health challenge, (b) deciphering dimensions of the complicating health challenge, (c) describing the developing story plot (turning points), (d) identi- fying movement toward resolving, and (e) synthesizing fi ndings to address the research question. Each phase of the story inquiry method is used in this study.

Quantitative Approach

Several existing tools were examined to determine feasibility of use with this population. The challenge was to identify tools that adequately measure fam- ily management and how it infl uences outcomes in quality of life for children with TBI.

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FAMILY MANAGEMENT MEASURE

The FaMM was created to assess families’ strategies for managing caring for children with chronic illness and the extent to which they incorporate condi- tion management into everyday life (Knafl et al., 2011). The eight dimensions of the Family Management Style Framework (FMSF; Child Identity, Illness View, Management Mindset, Parental Mutuality, Parenting Philosophy, Management Approach, Family Focus, and Future Expectations) were used to generate the initial set of items for the FaMM (Knafl et al., 2011). The current version of the FaMM has 65 items with 7 to 9 items/subscale. The fi nal set of items of the measure comprises the Parent Mutuality subscale for partnered parents only. Alpha reliability for mothers/fathers for each of the subscales were accept- able: Child’s Daily Life (.76/.79), Condition Management Ability (.72/.73), Condition Management Effort (.74/.78), Family Life Diffi culty (.90/.91), View of Condition Impact (.73/.77), and Parental Mutuality (.79/.75); test–test reli- ability for the subscales ranged from .71 to .94 (Knafl et al., 2011). Knafl et al. (2011) also reported construct validity testing that indicated consistency with established measures.

PEDIATRIC QUALITY OF LIFE INVENTORY

The PedsQL (Varni, Seid, & Kurtin, 1999) is a 23-item self-report instrument for children and proxy report for parents that includes physical functioning (8 items), emotional functioning (5 items), social functioning (5 items), and school functioning (5 items). The measure includes developmentally appropri- ate report forms for different age ranges, as well as condition-specifi c modules to complement the generic scales. It is designed to be used for healthy popula- tions as well as children with acute and chronic health conditions. The tool has been used in numerous studies of health-related quality of life for both typi- cally developing children and children with special healthcare needs. Internal consistency reliability for the full 23-item scale approaches .90 for both reports. Validity has been demonstrated through correlation with other measures of disease burden. In this study, the PedsQL Measurement Model proxy report for parents will be used to enhance understanding about how parents assess the quality of life for their child who has had a TBI.

■ SAMPLE AND RECRUITMENT

The sample for this study is a purposive sample of parents who have cared for a child after a TBI. Participants will be identifi ed from a population of indi- viduals who had been referred to the Florida Department of Health—Brain and Spinal Cord Injury Program. Florida statute requires trauma centers to report all moderate-to-severe traumatic brain and spinal cord injuries through a central registry. Individuals identifi ed through the registry are referred to

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local case managers in their community or region to contact for education, resources, and assistance with coordination of inpatient and/or rehabilitation discharge plans with the goal of community reintegration. Participation in the program is voluntary.

Procedure

Invitations to participate will be sent by the Regional Children’s Medical Services Nursing Director to all families who meet the inclusion criteria, with request to contact the researcher if they are interested in and willing to partici- pate. While it is hypothesized that there may be similarities and differences in culture care beliefs and how families reconceptualize normal and manage care of a child who has had a TBI, families who do not speak or read English will be excluded due to the diffi culties of translating and effectively understanding the nuances of language in their stories.

Sample Size Consideration

Stories will be collected from 10 to 15 parent caregivers of a child who has sus- tained a TBI. The maximum of 15 participants was chosen with the expectation that it will be a suffi cient number to reach saturation. Saturation in qualitative research occurs when there is no longer additional information that adds to the understanding of the area of study. In this mixed-method approach the quali- tative dimension of the study is guiding sample size determination. Creswell (2007) suggests that in narrative research, as few as one or two individuals can be sampled unless a larger pool is used to develop a collective story. In this pro- posed research, a larger pool is indicated to understand the collective story of parenting a child with TBI. In phenomenology, recommendations are to study 3 to 10 subjects, and for Grounded Theory, 20 to 30 individuals (Creswell, 2007). Analysis of the quantitative data is conceptualized as descriptive, and is intended to enhance understanding of the qualitative data.

Stories will be audiotaped and transcribed for analysis. Stories will be ana- lyzed to identify the dimensions of what matters most about the complicat- ing health challenge for the parent caregiver. Descriptive statements will be grouped and labeled with the themes that refl ect the complex dimensions of the health challenge. Stories will be examined to identify the turning points that contribute to management of the care of their child with TBI. An additional step in the inquiry process will be to identify approaches used by parents to move toward resolving the health challenge of parenting a child with TBI.

Story-gathering will begin by asking the participant to share their “Story of Parenting a Child Who Has Had a Traumatic Brain Injury.” The participant will be provided with a piece of paper with the title and a horizontal line drawn on it. They will be asked to identify the date of the circumstance that resulted in the TBI and it will be noted near the left end of the line. Then the date that

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the story is being gathered will be noted on the line. Story-gathering will fol- low a story path approach (Smith & Liehr, 2014). The researcher will begin the dialogue in the present. Participants will be asked to describe challenges that they are facing in the present and how they are managing those challenges. Then, participants will be asked to think about the time before the TBI and tell the researcher what they remember about what life was like for them and their child. They will then be asked to think about and describe the time between the injury and now, and how they got from the time of the injury to the pres- ent point in time. Finally, the last inquiry will ask participants to describe their hopes and dreams for the future.

Analysis Plan

ANALYZING THE HEALTH CHALLENGE

Deciphering the dimensions of the complicating health challenge involves engaging with the stories to fi gure out “what matters most.” Dimensions are unique descriptions shared by the storyteller about his or her personal expe- rience of the complicating health challenge (Liehr & Smith, 2011). Multiple themes will refl ect the different and complex dimensions of the health chal- lenge. An inductive approach will be used. Stories will be read and reread to ascertain meaning. Passages related to the health challenge description will be identifi ed. Like passages will be grouped and themes that address the dimen- sions of the health challenge will be named.

ANALYZING MOVEMENT TOWARD RESOLVING

Movement toward resolving refers to action taken to resolve the health chal- lenge. Stories will be examined to evaluate movement toward resolving the health challenge of caring for a child who has suffered a TBI. It is expected that there will be stories along the continuum from nearly complete resolution to little or no resolution. Once again, an inductive approach will be used as previously described. At the completion of this process, there will be a set of health challenge themes, and a second set of themes descriptive of approaches used to resolve the health challenge of parenting a child who has experienced a TBI.

ANALYZING TURNING POINTS

Finally, stories will be analyzed to identify the turning points that are integral to the health challenge. Turning points are defi ned as issues that have impor- tance for moving through the health challenge being faced, in this case car- ing for a child who has had a TBI. Turning points are important decisions or shifts in the story of the unfolding health challenge, and may interplay with movement toward resolving. An inductive approach will, once again, be used,

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grouping similar descriptions of transition shared by parents. Themes will be identifi ed for each set of turning point descriptions.

Results of the PedsQL and the FaMM will be analyzed using descriptive statistics (means and standard deviations) to address the quantitative research questions: (a) How do parents assess the quality of life for their child who has experienced a TBI? and (b) How do parents self-appraise management of everyday living following their child’s TBI? The small sample size prohibits inferential statistics but these descriptive data may shed light on the qualita- tive fi ndings by providing another perspective regarding how caregivers are managing their challenges in relation to the circumstance of having a child who suffered a TBI.

This parallel mixed-method design results in two sets of inferences, one qualitative and one quantitative, each developed from independent analysis (Chiang-Hanisko, Newman, Dyess, Piyakong, & Liehr, 2016). At the comple- tion of independent data analysis, the inferences will be examined together to identify areas of consistency and discrepancy, thereby enabling identifi cation of guidance for both practice and research.

Study Rigor

Sandelowski (1986) addresses the issue of rigor in qualitative research, noting that qualitative research emphasizes the meaningfulness of the research prod- uct rather than control of the process. Guba and Lincoln (1981) suggest that credibility of a qualitative study is the measure of its truth value, and is evident when the study presents such faithful descriptions of the experience that peo- ple immediately recognize it from description or interpretation as their own.

Tappen (2011) identifi es a number of ways to ensure trustworthiness of qual- itative research. Credibility is established through prolonged engagement and observation, member checking, peer debriefi ng, negative case analysis, and tri- angulation. Two of these approaches will be used: prolonged engagement and peer debriefi ng.

Prolonged engagement and persistent observation allow time and opportu- nity to test possible explanations and develop emerging explanations. Length of engagement is infl uenced by how well you already know the language and culture. This researcher has worked directly with children and families of chil- dren with TBIs for more than 5 years and is familiar with what families expe- rience. Story-gathering is intended to provide a structure and framework for enhancing understanding of the multiple dimensions of the health challenge. During the interview the researcher will ask participants to clarify informa- tion that has been shared as part of story-gathering, to be sure that an accurate refl ection of their intention has been heard.

Peer debriefi ng, seeking feedback from individuals with expertise on the subject and methodology, is another strategy for ensuring trustworthiness of qualitative research. The doctoral candidate’s dissertation committee chair will

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serve as the expert, and will be asked to review 20% of the sample for assess- ment of analysis. Feedback will be elicited from other committee members who are subject matter experts.

Cases will be examined after the initial analysis is completed to see whether the dimensions of the health challenge, movement toward resolving, and turn- ing points are applicable to all cases. Negative cases (those that differ from the prevailing themes), if identifi ed, will also be included for analysis. It is important to consider divergent meaning and incorporate this consideration into conclusions.

The dependability of qualitative research is equivalent to reliability in quan- titative research. Lincoln and Guba address the importance of an audit trail, a careful compilation of material. The researcher will keep careful records of raw data (fi eld notes, audio recordings, documents), data analysis products (sum- maries or ideas that occur to the researcher during study), coding schemes, process notes (descriptions of how data were obtained and how analysis done), refl ections of the investigator (personal notes and refl ective journal), and surveys or questionnaire guides (forms used to collect information on par- ticipants, interview guides).

Ethics and Institutional Review Board

Because this is research involving human subjects, institutional review board approval will be necessary. Institutional review board approval will need to be obtained from the Florida Department of Health as well as Florida Atlantic University. Invitations will be sent by the Regional Nursing Director for Children’s Medical Services, in order to protect the confi dentiality of clients. Subjects who express interest in the study will be informed that their partici- pation is voluntary, and their decision about participation will not affect the services they receive through the Brain and Spinal Cord Injury Program. Also, refusal to participate will involve no penalty or loss of benefi ts, and they may stop participating at any time. The purpose of the research will be explained to participants both verbally and in writing, to ensure understanding of participation.

It is possible that in the process of sharing stories about managing care of their child with TBI, parents may identify unmet needs. They will be provided with contact information for the Brain Injury Association of Florida, which provides family support to survivors and caregivers of survivors of TBI, information, and educational resources. They will also be provided contact information as appro- priate for their local community health and/or community mental health center.

Data Collection Protocol

Parents who respond to the invitation to participate will be contacted by the researcher to further explain the study and to set up an appointment. The total

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time allocated for the appointment will be 1.5 to 2 hours. The consent form will be introduced and explained. Time for story-gathering will be 45 minutes to 1 hour, with additional time for introduction, demographic and health data, and completion of quantitative measures.

Demographic and health data will be collected in an interview format, in order to establish rapport and get to know the participant. These data will include caregiver and child information. Caregiver information will include: age, gender, ethnic background, marital status, duration of marriage, educa- tion, occupation, and parent perception of severity of injury. Child informa- tion will include: age, gender, ethnic background, age at time of injury, and preexisting conditions (e.g., attention defi cit hyperactivity disorder [ADHD], behavioral or learning disabilities).

Stories will be collected as previously described using a story path approach (Smith & Liehr, 2014), beginning with the present experience, life before the TBI, time from the TBI to the present, and future hopes and dreams. Stories will be audiotaped for accuracy and to facilitate the analysis process.

Parents will be asked to complete the PedsQL and FaMM immediately after the story is completed. If they are unable to complete these due to time con- straints or other factors at that time, they will be offered the option to com- plete the measures within 48 hours and then mail back to the researcher. The researcher will telephone participants after 48 hours to see if there is anything they want to add to the story that might not have been included, and to remind them to mail back the measures.

■ EVALUATION OF THE STRUCTURE BUILDING PROCESS

The process of moving from concept development to the proposal and imple- mentation of research was guided by the concept of reconceptualizing normal after TBI. The foundational understanding of this idea emerging during con- cept building set in motion a proposal development process that integrated qualitative and quantitative approaches for data gathering and analysis.

This study used a parallel mixed-method approach to understand how fami- lies manage the care of a child with TBI. The qualitative inquiry was guided by Story Theory and story inquiry method. This narrative approach was selected because of its essential congruence with nursing practice and research and my understanding about the importance of knowing the stories of these families, based on years of nursing practice experience. Quantitative data was collected using the PedsQL and the FaMM to provide descriptive data with the potential to enhance understanding of the complexity of the health challenge of parent- ing a child who had suffered a TBI.

One of the qualities essential for both concept building and proposal devel- opment was adherence to a systematic scholarly process. The skills that were

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developed during concept building, like thoughtful refl ection to synthesize ideas and determine next directions, were critical to proposal development. Each step from beginning with the practice story in concept building to prepa- ration of a three-chapter dissertation proposal was built upon the learning that has come before it. From my perspective, concept building and dissertation proposal development are parts of a whole for scholars on a path to complete dissertation research.

■ REFERENCES

Chiang-Hanisko, L., Newman, D., Dyess, S., Piyakong, D., & Liehr, P. (2016).

Guidance for using mixed methods design in nursing practice research. Applied Nursing Research, 31, 1–5.

Creswell, J. W. (2007). Qualitative inquiry & research design: choosing among fi ve approaches. Thousand Oaks, CA: Sage.

Duff, D. (2002). Family concerns and responses following a severe traumatic brain

injury: A grounded theory study. Axon, 24(2), 14–22.

Duff, D. (2006). Family impact and infl uence following severe traumatic brain injury.

Axon, 27(2), 9–23.

Faul, M., Xu, L., Wald, M. M., & Coronado, V. G. (2010). Traumatic brain injury in the United States: Emergency department visits, hospitalizations, and deaths. Atlanta,

GA: Centers for Disease Control and Prevention, National Center for Injury

Prevention and Control.

Greif, S. J. (2014). Reconceptualizing normal. In M. J. Smith & P. R. Liehr (Eds.),

Middle range theory for nursing (3rd ed., pp. 383–396). New York, NY: Springer

Publishing.

Guba, E. G., & Lincoln, Y. S. (1981). Effective evaluation. San Francisco, CA:

Jossey-Bass.

Kao, H.-F. S., & Stuifbergen, A. K. (2004). Love and load–the lived experience of the

mother-child relationship among young adult traumatic brain-injured survivors.

Journal of Neuroscience Nursing, 36(2), 73–81.

Keenan, H.T., Runyan, D.K., & Nocera, M. (2006). Longitudinal follow-up of families

and young children with traumatic brain injury. (Disease/Disorder overview).

Pediatrics 117(4), 1291.

Knafl , K., Deatrick, J. A., Gallo, A., Dixon, J., Grey, M., Knalt, G., & O’Malley, J. (2011).

Assessment of the psychometric properties of the Family Management Measure.

Journal of Pediatric Psychology, 36(5), 494–505.

Liehr, P., & Smith, M. J. (2007). Story inquiry: A method for research. Archives of Psychiatric Nursing, 21(2), 120–121.

Liehr, P., & Smith, M. J. (2011). Refi ning story inquiry as a method for research.

Archives of Psychiatric Nursing, 25(1), 74–75.

Mishel, M. H., & Clayton, M. F. (2008). Theories of uncertainty in illness. In M. J.

Smith & P. R. Liehr (Eds.), Middle range theory for nursing (2nd ed., pp. 55–84).

New York, NY: Springer Publishing.

440 I I I . CONCEPT BU ILD ING FOR RESEARCH—THROUGH THE LENS OF M IDDLE RANGE THEORY

Mishel, M. H., & Murdaugh, C. L. (1987). Family adjustment to heart transplantation:

redesigning the dream. Nursing Research, 36, 332–336.

Roscigno, C. (2008). Children’s and parents’ experiences following children’s moderate to severe traumatic brain injury (Unpublished doctoral dissertation). University of

Washington, Seattle, WA.

Sandelowski, M. (1986). The problem of rigor in qualitative research. Advances in Nursing Science, 8(3), 27–37.

Slomine, B. S., McCarthy, M. L., Ding, R., MacKenzie, E. J., Jaffe, K. M., Aitken,

M. E., . . . Paidas, C. N. (2006). Health care utilization and needs after pediatric

traumatic brain injury. Pediatrics, 117(4), e663–e674. doi:10.1542/peds.2005-1892

Smith, M. J., & Liehr, P. (2014). Story theory. In M. J. Smith & P. R. Liehr (Eds.),

Middle range theory for nursing (3rd ed., pp. 225–251). New York, NY: Springer

Publishing.

Tappen, R. M. (2011). Advanced nursing research, from theory to practice. Sudbury, MA:

Jones & Bartlett.

Varni, J. W., Seid, M., & Kurtin, P. S. (1999). Pediatric health-related quality of life

measurement technology: A guide for health care decision makers. Journal of Clinical Outcomes Management, (6), 33–40.

Wongvatunyu, S., & Porter, E. J. (2008a). Changes in family life perceived by mothers

of young adult TBI survivors. Journal of Family Nursing, 14(3), 314–332.

Wongvatunyu, S., & Porter, E. J. (2008b). Helping young adult children with

traumatic brain injury: the life-world of mothers. Qualitative Health Research, 18(8),

1062–1074.