Adolescent Experience With Parental Cancer and Involvement With Medical Professionals: A Heuristic Phenomenological Inquiry

Abstract

Experiencing the death of a loved one can be a difficult occurrence. Adolescents, in particular, experience death in a unique way. Yet there is relatively little research on adolescents’ experience with parental death and their involvement in the medical setting during a parent’s terminal illness. This qualitative study utilized heuristic inquiry, a type of phenomenological research, to investigate adolescents’ involvement in the hospital setting during parental terminal illness. Qualitative analysis of participants’ experiences resulted in two primary categories associated with adolescents’ involvement with medical professionals during parental illness: factors influencing hospital involvement and experience with health care professionals. The findings have implications for medical and mental health professionals who work with adolescent family members of terminally ill patients.

Keywords

adolescents heuristic inquiry medical professionals phenomenology qualitative research terminal illness youth family therapy

Adolescence is an important transitional stage of physical, psychological, emotional, and social development (Curtis, 2015). Most youth will have gone through some adverse experiences by the time they reach their teenage years, such as academic pressures, family expectations, or moving to a new city and having to make new friends (Boparai et al., 2017). However, the death of a loved one may be the first traumatic event an adolescent experiences (Kuntz, 1991). A traumatic event is defined as a stressful or disturbing experience in which the level of distress is overwhelming and results in increased feelings of anxiety, depression, and, at times, posttraumatic stress disorder (PTSD; American Psychiatric Association, 2013).

Various factors, such as family structure, cultural background, personal beliefs, social support, and societal norms influence the way adolescents perceive death. If the death of a family member is not handled appropriately, an increased sense of vulnerability, inability to trust, and low self-esteem may occur (Taiym, 2011). Several studies demonstrate that adolescents who experience the death of a parent are at risk for increased behavioral and emotional problems (Edwards et al., 2008; Faccio et al., 2018; Park et al., 2017). Adolescents who have a parent diagnosed with cancer have a higher risk for anxiety, depression, feelings of helplessness, troubled behavior, academic struggles, and difficulty establishing meaningful relationships (Osborn, 2007).

In the United States, more than 1.7 million new cases of cancer and nearly 610,000 cancer deaths were projected to occur in 2018 (National Cancer Institute, 2018). Among new cases, approximately 18% of adults diagnosed with cancer have minor children (Weaver et al., 2010). A life-threatening disease, like cancer, can affect everyone in the family (Cypress, 2011), and many parents do not know where to receive help with communicating their diagnosis to their children. Furthermore, children may struggle with lack of information or understanding their parent’s condition and prognosis, as their access to medical providers and information may be limited. The purpose of this study was to understand the experience of adolescents’ involvement in the hospital setting during parental terminal illness.

Parental Terminal Illness, Family-Centered Care, and Medical Family Therapy (MedFT)

Cancer-struck parents want information from their providers on how to talk to their children or help to facilitate such conversations, but are often met with passive recommendation to seek help elsewhere (Turner et al., 2007). Medical providers disagree about having children present at the hospital during treatment with a dying patient (Duran et al., 2007). Physicians must also consider parent’s desires regarding the extent of information to be shared with children. Lack of training and fear of harming the recipient are common reasons for providers avoiding conversation about the illness and death with children of their patients (Christakis & Iwashyna, 1998; Hancock et al., 2007). However, with specific knowledge and training, it is possible to increase the skills and confidence of oncology treatment team members in working with patients and their families (Zaider et al., 2016).

Recent trends in family-centered care (FCC) have shifted toward being more inclusive of family members, especially children. FCC began with the idea that health care provision is a joint effort of medical and allied health professionals (Arango, 2011). Although FCC has been made a standard of care by the American Academy of Pediatrics for medical care for children (Kuo et al., 2012), it is not often utilized with children of ill or dying parents. The views and desires of adult family members tend to be prioritized over children’s views, thus leaving them out of discussions regarding the illness (Stowers et al., 2018). More research is necessary to understand how health care professionals and families can work together to adapt to and cope with having an ill family member.

Medical Family Therapy (MedFT) is an integrative discipline in which family medical problems are addressed through a comprehensive treatment approach. Medical family therapists (MedFTs) view problems through a biopsychosocial perspective (Hodgson et al., 2014). As McDaniel et al. (1992) explained, “All human problems are biopsychosocial systems problems: there are no psychosocial problems without biological features and no biomedical problems without psychosocial features” (p. 26).

One of the roles of MedFTs is to aid patients and their families in making decisions about medical care and communicating their needs to medical professionals (Hodgson et al., 2011). Informing and involving patients and families in their care is known as shared decision-making (Stermensky & Brown, 2014). Furthermore, MedFTs help chronically ill patients and their families adjust to the many changes that accompany the diagnosis (Speice & McDaniel, 2016). The goal is to have the patient and their family tolerate the ambiguity and uncertainty of the prognosis in order to empower effective caregiving (McDaniel et al., 2014). MedFTs are placed in a unique position to employ the biopsychosocial lens when working with families and illness. They also possess the skills to work with families from a family systems perspective and address issues such as communication, adaptation to illness, and other concerns that may be overlooked with cancer patients and their families (Zaider & Steinglass, 2018).

While the need is great, only a handful of studies have focused on adolescent involvement with medical providers during parental terminal illness (Bylund-Grenklo et al., 2015; McCarthy et al., 2019; Osborn, 2007). Previous research suggests that some children are reluctant to be involved in the hospital setting due to feelings of anxiousness around the hospital setting and feeling that their experience was minimized (e.g., they were seen as just another family in the hospital dealing with a common disease; Finch & Gibson, 2009). However, many youth report that it is important to be told when their parents are diagnosed with cancer and when death is near; but only a little more than half are actually told either by a parent, the healthcare provider, or both (Bylund-Grenklo et al., 2015).

Adolescents interacting with their parent’s providers during treatment can establish trust that the parent is in good hands and is being treated well (Shea et al., 2008). A lack of information received regarding the illness of a parent places adolescents at a higher risk for long-term psychological distress (Barry & Prigerson, 2002). Furthermore, limited communication with providers and not being aware of the possibility of parental death results in adolescents being poorly prepared for the death, which puts them at risk for psychological complications for several years after the cancer bereavement (Hauksdottir et al., 2010; Kreicbergs et al., 2004). Trusting medical providers and being able to openly communicate regarding the treatment options helps adolescents perceive the care of their parents in a positive way, which can help with accepting the illness, impending death, and grief (Bylund-Grenklo et al., 2013; Klostermann et al., 2005). Adolescents have identified the need for a safe space to interact with peers as well as health professionals so that they can process the information without worrying about the reaction of their parents (Kennedy & Lloyd-Williams, 2009; Stiffler et al., 2008). Therefore, understanding the factors that contribute to adolescent involvement with health care professionals is critical to their mental health, ability to cope with the illness, and being prepared for the possibility of parental death.

Research Aims

The aim of this study was to explore the retrospective experience of young adults who, during their adolescent years, interacted with medical professionals during parental terminal illness. The researchers also sought to examine the factors that influenced interaction between the adolescent and the medical providers. The study was guided by the following questions:

Research Question 1 (RQ1): What is the experience of adolescents’ involvement with medical providers during a parent’s terminal illness?

Research Question 2 (RQ2): What factors influence adolescent involvement with medical providers during a parent’s terminal illness?

Method

Theoretical Framework

Given our interest in developing an in-depth understanding of the experience of adolescents and their involvement with medical providers during a parent’s terminal illness, we chose to use a phenomenological approach for the study. In addition to being a branch of philosophy, phenomenology is also a framework for qualitative research that focuses on lived experience and the meaning that people give to their experience (Fife, 2015; Giorgi, 1985; Merleau-Ponty, 1962). Phenomenological methods provide a means of developing rich descriptions of human experience regarding the phenomenon of interest to the researcher.

Our study was guided by principles of heuristic inquiry, a phenomenological approach to qualitative research that emphasizes the personal experience of both the researcher and the participants (Dahl & Boss, 2005; Moustakas, 1990; West, 2001). Heuristic inquiry requires two essential components: (a) the researcher must have had personal experience and interest in the phenomenon being studied, and (b) the research team members also have an interest in the phenomenon (Douglass & Moustakas, 1985; Moustakas, 1990). Along with the experiences of the research participants, heuristic inquiry places importance on “personal experiences, reflections, and insights of the researcher” (Patton, 2002, p. 108). With this experience, the researcher is capable of understanding the phenomena of interest through disciplined self-reflection and scientific inquiry (West, 2001). Heuristic inquiry differs from other forms of phenomenological inquiry in that it places greater emphasis on the connection of the researchers with the topic of the study, derives meanings from both the researchers’ and participants’ experiences, and includes the researchers’ intuition as well as tacit understanding of the experience (Patton, 2002). Although heuristic inquiry studies draw upon the experiences of the researcher, careful attention to analytic principles and reflexivity (described in the following paragraph) help ensure that the researchers are faithful to participants’ experiences and avoid misconstructions and impositions in order to advance the perspectives of the authors (Moran, 2000).

Researcher Reflexivity

Heuristic inquiry provided an appropriate framework for this study because of our (V.K. and S.T.F.) personal experience with the death of a loved one when we were adolescents. My (V.K.) personal experience includes the death of my father when I was aged 15 years and my involvement in the medical setting during my fathers’ cancer treatment (see West, 2001). My interactions with medical professionals were extensive and generally positive. However, my adolescent sister was not involved during the treatment and was mostly absent from the hospital during that time, which led to a completely different experience when our father died. This experience sparked my interest regarding adolescents’ involvement in medical treatment during parental cancer and being physically present at the hospital.

I (S.T.F.) have extensive experience with phenomenological research and share an interest in understanding adolescents’ experience with the death of a loved one, having lost a younger brother in a car accident when I was 16 years old. Furthermore, I embrace a biopsychosocial-spiritual perspective of human beings and health care (Hodgson et al., 2014; NASW, 2014), and I have experience with the utilization of family therapists and behavioral consultants in hospitals and other medical settings to augment patient and family care.

The research team also included two marriage and family therapy graduate students who assisted with data analysis. All four researchers were trained in systemic theory, marriage and family therapy, and qualitative research methods. Prior to data collection and analysis, we discussed our experiences and previously held ideas regarding the topic of our study. I (V.K.) recognized my personal belief in favor of adolescents being included in the treatment of an ill parent and that medical professionals should be open and honest regarding the diagnosis of a parent with a terminal illness. Nevertheless, given the varied experience of my sister and me during our fathers’ illness, I understood that adolescents have diverse experiences with medical settings. This awareness informed the questions I asked during the research interviews. Having personal experience with cancer of a parent, I was able to connect on a deeper level with the participants, which resulted in authentic conversations during the interview process.

Data analysis was also influenced by my (V.K.) experience with parental illness and involvement with medical professionals. This allowed me to share insights with the team regarding the interview process and emerging analytic ideas. For example, I was familiar with the desire participants had for information and open communication with doctors. Yet, I was careful to privilege participants’ experiences during the interviews and analysis, rather than seeking confirmation of my own experience or bias.

Having an analysis team of four members (two of whom had not experienced the death of an immediate family member during adolescence) brought multiple perspectives to the analytic process and helped illuminate multiple factors that influenced involvement in the medical setting and with health care providers. We kept memos of our reflections as we analyzed the data and shared these with each other. We openly discussed our biases and personal experiences during research team meetings to ensure that the analysis and results remained faithful to the participants’ experiences.

In addition to personal experience, our interest in this topic stems from our (V.K. and S.T.F.) concentration in MedFT and integrated behavioral health care. All authors were clinically active during the study, and we (V.K. and S.T.F.) have encountered clients seeking advice or help in their medical care and have felt inadequate to help them at times. An extensive literature review revealed minimal research on adolescent involvement in medical settings during parental illness or collaborative work between mental health and medical providers in oncology treatment settings. These experiences furthered our interest in this study.

Participants and Data Collection

After receiving institutional review board approval, individuals above the age of 18 years were recruited to participate in the study. Participants were recruited through a variety of methods. The study was advertised through flyers at local marriage and family therapy private offices, counseling agencies, and the local university. In addition, a university research pool was used, where a study description was posted to a website accessible to all students. This method was the most successful as the majority of participants resulted from the research pool. Interested individuals contacted the researchers directly regarding participation in the study. Participants recruited from the research pool received extra credit or research credit for enrolling in the study. Participants were also asked whether they knew any other qualified participants.

Inclusion criteria included the death of a biological or adopted parent due to a terminal illness during adolescence (12–18 years) and some involvement with medical staff during their parent’s illness. Nine individuals agreed to participate in the study (see Table 1). Seven identified as female and two identified as male. All participants (N = 9) were above the age of 18 years, ranging from 18 to 26 years (M = 21.11, SD = 2.93). Seven identified as Caucasian, one identified as African American, and one identified as Hispanic. Each of the participants experienced the loss of a parent due to terminal illness during their adolescent years. In each case, the illness was some type of cancer. The death of the parent of all participants occurred at least a year before the time of the study (M = 3.9, SD = 2.93). All participants had contact with medical staff during the time of the parent’s diagnosis and treatment.

Table 1.

Participant Information.

Participant (ID No.)	Gender	Parent and type of cancer	Prognosis	Family support	Age of participant when death occurred	Time between death and interview in years
001	Female	Mother, brain	Few months	No father, one older sibling	18	6
002	Female	Mother, small intestine	Few months	No father, no siblings, distant family	16	9
003	Male	Father, lung	2 years	Mother, two siblings (twin and older)	18	2
004	Male	Both, breast and brain/throat	Was not told	Father, no siblings	13/16	5 and 2
005	Female	Mother, brain	None given	No father, one younger sibling	13	5
006	Female	Mother, melanoma	None given	Father, one older sibling	17	4
007	Female	Mother, lung	None given	Father, one older sibling	14	1
008	Female	Mother, breast	None given	Father, one younger sibling	15	3
009	Female	Father, brain	6 months	Mother, one younger sibling	17	2

Following the phenomenological procedures suggested by Dahl and Boss (2005), data collection consisted of basic demographic information and semi-structured interviews that addressed participants’ retrospective recollection of their experience with their involvement with medical professionals during the illness of their parents. Prior to the start of the interview, each participant provided verbal consent to the interview process and agreed to have the interview audio-recorded. Sample questions of the semi-structured interview included the following: How did you hear about your parent’s diagnosis? What were your thoughts and feelings when you received the news of your parent’s diagnosis? What was your experience like talking with the nurses and doctors? In what way were you involved in the treatment options and decision-making process?

All interviews were conducted by the lead author (V.K.) throughout the study to maintain consistency, while allowing flexibility to obtain important information through follow-up questions. Two of the nine interviews were conducted through phone; the other seven interviews were conducted in person in the researcher’s private office. The interviews were audio-recorded and lasted between 30 and 50 minutes. The interviews were transcribed verbatim by the lead author and verified by a member of the research team.

Data Analysis

The authors utilized phenomenological analysis procedures (Dahl & Boss, 2005; Giorgi, 1985) to explore the unique perspectives of individuals who lost a parent due to a terminal illness and their experience with medical professionals. Members of the research team individually read the interview transcripts to gain a sense of their entirety. Team members then reread the interviews and identified specific “meaning units” from the participants’ experience related to the questions guiding the study (Giorgi, 1985, p. 11). The meaning units from individual interviews were assimilated and organized into categories associated with the phenomenon of interest.

Throughout the analysis process, the research team met and examined the meaning units, emerging categories, and team members’ interpretations and insights related to the research questions. Team meetings allowed for comparisons of analysis, discussing discrepancies, and developing a consensus about prominent categories and subcategories. Team members utilized memos to record the analysis process and theoretical reflections. In the final stages of analysis, the findings were organized into a coherent description of participants’ experience related to their involvement with medical professionals during their parent’s terminal illness.

Data collection and analysis took place in two phases. The first phase consisted of six interviews, which were analyzed independently by each researcher and then as a group according to the process described above. The interviews were analyzed sequentially so that the initial analysis of each interview could inform the subsequent interview. This process continued until the six interviews were thoroughly analyzed, resulting in the identification of categories and subcategories related to the primary research question. In order to add depth to the analysis and to achieve saturation, a second phase of three additional interviews were conducted and analyzed in a similar manner as the initial six. This provided confirmation, refinement, and thickening of the primary categories and subcategories identified in the analysis.

To enhance the credibility and trustworthiness of the findings, triangulation was sought through the use of a research team that included individuals who did not have personal experience with the phenomenon of interest, which provided various observations, perspectives, and conclusions (Carter et al., 2014; Farmer et al., 2006; Moon et al., 1990). The utilization of a team prevented premature foreclosure on potential meanings of participants’ experiences and reduced the risk that the results were merely representations of the lead author’s personal experience. In addition, the research team compared and integrated the analysis of the three final interviews with the findings of the first six interviews. In order to augment the rigor and quality of the analysis and results, the authors also sought feedback from outside auditors (Thomas & Magilvy, 2011). Furthermore, the authors provided an audit trail by outlining (a) the specific purpose of the study, (b) participant selection, (c) data collection procedures, (d) the analysis and presentation of the research findings, and (e) the steps taken to establish credibility of the data (Thomas & Magilvy, 2011).

Results

Our purpose was to study the experience of adolescents’ involvement in the hospital setting during parental terminal illness. The analysis of the qualitative interviews resulted in an in-depth description of participants’ retrospective recollections of their experience with parental illness and medical professionals. Although there was some variability in the experiences of the participants, there were consistent accounts of occurrences that cut across most, if not all, participants. We organized the results into two broad categories related to the participants’ experiences: factors influencing hospital involvement and experience with health care professionals, each with a number of subcategories.

Factors Influencing Hospital Involvement

Adolescent involvement in the hospital setting included talking with the medical professionals, taking their ill parent to hospital classes, and joining the parent during their treatment or hospital stay. Four interrelated subcategories were found to influence the involvement of adolescents with medical professionals: age, family structure, type of communication, and the reality of illness severity.

Age

All nine participants described age-related difficulties or challenges related to their involvement with medical professionals who were caring for their parents. They consistently recalled that their age often affected the quality and quantity of communication they had with medical professionals. Participants learned quickly that their input might be disregarded or dismissed because of their young age: “We knew, because of our age they were just not talking to us, because we were so young. So, we went through a lot of problems not being taken seriously” (001). Some participants became reluctant to talk with medical professionals because they were disregarded in their previous attempts to speak to them. These participants talked about how they feared to speak up, even when they felt they needed to, because they felt that their age would limit the interaction with the medical professionals. Even participants who pushed through the age barrier and tried to be involved felt like they were not being taken seriously. As one participant described, “I appreciated their [doctors] willingness to talk to me, but at the same time I recognized I was only 15 and knew that whatever I would say, they would not take seriously” (002). Another participant recalled being regarded as a child, although she was 16 years old and had taken on many adultlike responsibilities when her mother was diagnosed with cancer.

Family structure

In addition to participants’ age, family structure was another factor that played a role in the level of involvement that participants had with the hospital and medical professionals during their parent’s illness and hospitalization. For the purposes of this study, family structure is defined as the presence or absence of a healthy parent and siblings. In particular, participants were influenced by whether or not they had a healthy parent present. Our sample included six participants with a healthy parent present and three participants from single-parent families.

In situations where the healthy parent was not present, the adolescent stepped directly into a caregiving role, feeling obligated to take on more responsibility. Not having a healthy parent present led participants toward more direct involvement with the medical professionals, such as speaking to them about the diagnosis, prognosis, and treatment. Nevertheless, in spite of attempts for greater involvement, some experienced limited success. Participant 001 reported,

We didn’t have [a] dad in the picture; we didn’t have any other parents. We were the children, and so that position is a one down. I think even though my mom wasn’t competent to take care of her own needs at that point, she was seen in society as being competent.

In cases where the other parent was present, adolescents’ involvement with medical professionals, and thus knowledge of the current situation and future prospects, was constrained. These participants described feeling isolated by the parent, as if the parent was trying to protect them by blocking access to the medical staff and concealing certain information in order to prevent them from knowing the painful truth. One participant shared, “Whenever the doctors did come around, my dad was like a shield towards us, where he would stand in front of us, so we wouldn’t really hear or understand what the doctors said” (006). In addition, when adolescents did receive information about the illness, it was often incorrect or diluted: “One doctor would tell us, [my father] will probably have like two years, and then like he just dies in three months” (003).

Finally, in families where a younger sibling was present, regardless of healthy parent presence, the participants felt the need to be protective or take on a parental role. Participant 009 recalled, “I was not sure how my little sister will handle it, but I knew I had to somehow protect her from harming information.” Participant 005 spoke about her experience with role changes that accompanied her mother’s illness:

I kind of assumed the adult kind of role . . . I’d rather do that and know what was going on and be able to be there for her, and knowing it was her last days, rather than going to school and having to worry about what was going on at home.

Communication

Another prominent subcategory related to the adolescents’ experiences in the hospital setting is communication. Communication is closely related to the themes of age and family structure as the nature and frequency of communication between adolescents and medical professionals was often influenced by participants’ age and family structure at the time of their parent’s illness. Based on the accounts of the participants, we identified four types of communication that influenced participants’ involvement with medical professionals: open, limited, instructive, and neglectful. Participants recalled that their communication experiences with health care professionals varied throughout their parent’s treatment and hospitalization. Although participants had diverse communication experiences with medical professionals, these four types of communication were most prominent in participants’ accounts.

Open communication

Open communication pertains to situations in which the participants felt free to ask questions and offer suggestions. This type of communication was facilitated by medical professionals manifesting a willingness or openness to the adolescents’ questions and desire for information about their parent’s illness, treatment, and prognosis. Participant 004 recalled, “I was proposing my own ideas to the doctor. Suggesting different things that I thought would be a good idea to try.” It also refers to the adolescents’ openness to receiving information from medical professionals. Situations of open communication made the participants feel included and informed. Participants reported that open communication resulted in feelings of being heard and comforted, and it enhanced their understanding of the parent’s diagnosis.

Limited communication

Although each of the participants described experiences with open communication, several also discussed times when their communication with medical professionals was limited or constrained. Sometimes, this was because the adolescent did not want to talk to medical professionals for reasons such as not knowing what to say, how to say it, or being in denial. Participant 002 recalled the day she was being informed about her mother’s relapse and not wanting to talk with anyone about it: “I did not feel comfortable talking to her [mother] about the scary questions I had.” She continued, “And at the hospital, the doctors and my family, who were all nurses and doctors, tried talking to me, but I did not want to. I just did not feel comfortable.” At other times, the communication was constrained by the medical professionals. For example, one participant said that the doctors would only speak with her ill or healthy parent, but not to her, leaving her with unanswered questions and unresolved concerns. As described above, participants perceived their age to be a factor that limited communication.

Instructive communication

At times, medical professionals were described as using instructive communication, which helped the adolescents feel informed, by taking the time to explain thoroughly what the diagnosis meant and what would happen when treatment started. This type of communication was identified by the participant as positive, keeping them well-informed and feeling included. One participant remarked, “I just had a lot of information on what’s happening” (004).

Instructive communication was described in a number of ways. For example, one participant recalled her mother’s doctors always being available, checking in on her, and providing her with information as well as food in order to keep her informed and happy, “When she [mother] was getting chemo, he [doctor] would bring me food and drinks. He was open to talking to me any time, and so he really answered a lot of my questions” (005). Instructive communication was also exhibited by the availability of classes at the medical facility of which the diagnosed patient and family members could be a part. One participant explained how these helped him be informed not only about the diagnosis, but also about what he should expect during his parent’s illness: “They inform you on what’s going to happen to your body when you go through the different treatments and they tell you ‘your body is going to experience this so don’t worry’” (004).

Neglectful communication

In contrast to open and instructive communication, neglectful communication was identified when the medical professionals were perceived to be avoiding the adolescent, did not spend sufficient time with the entire family, and left the family members feeling like they were just another family in the hospital. This type of communication left the adolescent feeling misinformed, disregarded, powerless, and helpless. One said, “They didn’t really tell me anything. The doctors didn’t even try to talk to us” (007). Another participant recalled feeling unimportant to the medical professionals:

I know they have a lot of other patients, but they threw off the vibe that they did not care. Like he [father] would be in his room and need something, we call them, and it would take them a long time to answer and provide him with what he needed. And that made me feel like they are not sensitive to families’ feelings. (003)

Another participant described a similar situation, needing assistance from medical professionals but not receiving it:

My mom was like 380 pounds, just had brain surgery, and was hallucinating and wanted to leave the hospital. I went out to the hallways and yelled for help, for a doctor or a nurse, and literally no one came. (001)

Reality of severeness and prognosis

Being present at the hospital often led to the participants receiving the prognosis of the ill parent, including an explanation of what treatment options and how long the parent had to live. This knowledge led to the realization of reality—the truth of the seriousness of their parent’s illness and their impending death. When the participants realized and accepted that their parents were terminally ill, they often experienced a phenomenon that can be described as rapid maturity. Participants explained how they took on new and more mature responsibilities of their own volition. For example, a participant reported, “When you are in that situation, you are not a kid anymore. I used to be the son in the house, one of the children. But all of the sudden, I am the man of the house” (003). Participants described a number of different responsibilities that emerged with their parent’s illness, such as taking care of a sick parent, holding things together at home, or caring for their siblings. The adolescent often took on the caretaker role, whether another healthy parent was present or not. One participant described it as keeping things as normal as possible, which included taking care of the household chores: “I took on the mom role and tried to keep everything like when she was alive. And taking her position in any way” (006). Understanding the seriousness of the illness also had an effect on the extent of involvement with health care staff. One participant recalled being in denial about their mother’s illness. However, once hospice care began, her communication with the nurses increased: “I did not understand the severity of the situation until my mom went to the hospice. I knew hospice is where you go to die, so then I made sure to talk and listen to the nurses” (002).

In addition, the realization of the seriousness of the diagnosis influenced the participants to accept the illness and come to terms with the possibility of their parents dying and begin to envision what life may look like after the parent dies. One participant recalled thinking about the future after seeing the physical deterioration of his father: “I just started thinking, I could never imagine life without him. I never thought that would be something I would go through now” (009). Participants who had knowledge of prognosis were less shocked and surprised when the death occurred, compared with participants who received minimal information about the prognosis. For example, one participant said, “We had been raised knowing that our mom would die from when we were young. So, we had all the conversations. We knew what she wanted and all that stuff, and she did not want to be resuscitated” (001).

In summary, these experiences emphasize the importance of being aware of the illness, understanding its implications, and adapting to the illness. The process of accepting the reality and the severeness of the illness assisted these participants in taking on new roles and imagining life without the parent. Furthermore, it illustrates the impact of being informed (i.e., knowing the prognosis) and its association with the ability to accept the illness.

Experience With Health Care Professionals

Although participants recalled some frustration with their level of involvement with medical professionals, they also identified certain benefits of being present in the hospital and interacting with the health care professionals. Participants indicated that being present at the hospital helped them establish some type of relationship with the provider and gain a better understanding of the diagnosis; “The doctors explain to you what cancer is and were there for me to answer the questions I had” (007). In some cases, this relationship provided the adolescent with opportunities to speak to the medical professionals or ask direct questions regarding care and treatment. One participant explained, “After talking to the doctors, I knew what the chemo did to her body” (008). Being at the hospital also allowed them to take the ill parent to classes, during which they had opportunities to learn about cancer, different treatment options, and the process of treatment:

I took him to some of his classes, like where they talked about radiation and stuff like that. . . it helped me understand as far as what is going on with [father]. And it kind of helped me understand basically how much pain [father] was in. (003)

Lack of support

Although participants experienced benefits from their involvement with health care professionals, some of the participants felt betrayed by the health care system, as well as other organizations intended to support or assist them. For instance, one participant talked about the lack of support she experienced when taking her ill parent to an inpatient mental hospital, “They were like, ‘Your mom is fine; just take her home,’ and my sister was like, ‘I don’t feel safe driving with her’” (001). Another recalled,

No one at the hospital contacted us. Her doctor came because we called him, and he came by when the coroner came. But that was it. That was the last time I saw him, and so we never saw any of the same people again.

There should be some part of the medical process that is there for you when the person they are treating leaves. You are so involved, but once that one common link [i.e., the patient/parent] is gone, you fall apart. (009)

She continued stating that family members would benefit from health care professionals being trained to talk with family members about what will happen once the ill person dies.

Not receiving the desired help from medical professionals and facilities left these participants feeling hopeless and powerless, leading them to feel like there was nothing they could do or say to help their ill parent or themselves. “No matter what we did, we were ignored, and so eventually we just gave up, because we knew they wouldn’t listen to us anyway” (001). Each participant described moments of powerlessness and hopelessness regarding their experience with interacting with providers, leaving them with unresolved questions and concerns.

Feeling uninformed

Knowing and understanding the diagnosis, being aware of the prognosis, and accepting the uncertain future helped the participants cope with and process the death of their terminally ill parents. Yet all participants discussed a lack of understanding related to their parent’s illness, prognosis, or health care procedures. One participant stated that they desired more information about what to expect when taking care of a terminally ill person “because it’s not just going to be the spouse or the parents of the ill person taking care of them” (006). Participants also emphasized the potential benefits of medical professionals talking with the entire family, rather than just the patient or the spouse of the patient. One participant reiterated that doctors should be taught how to talk to the offspring of their patient or teach the parents how to talk to their adolescent child.

These suggestions shed light on the importance of medical providers taking a more systematic approach in their care with terminally ill patients (i.e., considering the entire family unit and not just the identified patient). Although the participants varied in age, they all agreed that they wanted some type of involvement and communication with the providers of their parents to help with processing and coping.

Discussion

The intent of this study was to gain a deeper understanding of adolescent experiences in the hospital setting during parental terminal illness through a heuristic phenomenology inquiry. Participants’ experiences highlighted several factors that influenced their involvement with medical professionals during their parent’s illness. Similar to findings of Bylund-Grenklo et al. (2015), our results highlight the need and desire of adolescent youth to receive information regarding the illness of their parent. Aligning with the results of Shea et al. (2008) and Klostermann et al. (2005), receiving information from the providers directly was associated with feelings of trust that the parent is in good hands and the ability to understand the diagnosis more than if information was received solely from the parent.

Doctor-patient communication is a fundamental aspect of health care as patients have the right to reliable information about their diagnosis, prognosis, and treatment options as they make decisions regarding their health (Pacian et al., 2014; Sari et al., 2016). It is also a key factor in patient satisfaction, building mutual trust, and the quality of diagnosis and treatment (Begum, 2014; Wu et al., 2014). Although there may be limits to the rights of family members’ access to medical and treatment information, they are often closely involved with the medical professionals who are treating their family members. The findings from this study demonstrate circumstances that either constrain or facilitate family members’ ability to be involved in the hospital setting and communicate with health care professionals. Certain types of communication from medical professionals (open, instructive) allow family members to be more involved by asking questions and gaining knowledge about the diagnosis, prognosis, and treatment. Other types of communication (limited and neglectful) may leave family members feeling alone, uneducated, and inadequate to help their parent. According to most participants in the study, their age was perceived as a barrier that limited communication with medical professionals. The diverse experiences with the various types of communication, and the need for age-appropriate information, highlight the necessity for additional training of providers in communicating with the entire family system (vs. just the patient). The results support and add to previous findings on barriers to communication with doctors, such as time constraints and knowledge regarding how to talk to children of their patients (Mira et al., 2012).

Although participants experienced some barriers to communication, in other cases, communication was facilitated through various contributions from the hospital and medical staff. For example, participants reported benefiting from educational classes in which both the adolescent and ill parent received information about the diagnosis and treatment. In some instances, having the medical professional available to address questions and concerns helped adolescents understand the diagnosis. Similar to the positive impact of effective communication between doctors and patients found in previous research (Sari et al., 2016), open and instructive communication from medical staff helped family members in this study feel informed and empowered. Training medical and mental health providers to improve communication strategies within the oncology department can increase open and instructive communication by providers (Zaider et al., 2016), which may help patients and their families adapt and cope with the diagnosis (Turner et al., 2007).

The findings of this study add to the overall understanding of integrated health care, which emphasizes the importance of communication and collaboration among providers (McDaniel et al., 2014). Participants’ experiences highlight the importance of building trust and communication over time with medical professionals. Furthermore, the study illustrates the need of cancer patients’ children to be included during the treatment in order to ensure healthy adaptation and coping. Providers, of all types, need to be educated on providing age-appropriate information and conversation styles, as well as building trust and helping adolescents understand and cope with the illness.

Implications for Medical Professionals

The results of this study suggest several implications for medical and mental health professionals who work with family members during and after terminal illness and end-of-life care. Wu et al. (2014) discuss the importance of physicians’ communication with patients and family members, emphasizing both the accuracy of communication content as well as the doctor’s manners and attitudes. Like many cancer patients who want to be an active part of treatment (Salamonsen, 2013), family members desire to be involved as well. Building on the recommendation for more “patient-centered communication” (Matusitz & Spear, 2014, p. 254), the findings of the study highlight the need for more “family-centered communication” as well. The results suggest that medical professionals can improve the experience of family members of terminally ill patients by including the family system during the diagnosis explanation and inform them what treatment options are available and what each treatment would look like. Fox et al. (2012) argue that “involving family members in each other’s care can be efficient, informative, and influential to the success of treatment plans” (p. 230). In this study, the findings indicate that adolescents of ill parents desire communication with medical providers about the illness, prognosis, and treatment options. Including the adolescent in the treatment process of the ill parent can help them accept the illness and prepare the adolescent for the upcoming family dynamic changes as well as the potential death.

Medical professionals can improve the experience of family members by teaching parents how to talk to their children about the diagnosis, treatment, and death. Participants in the study noted that educational classes, which explain the diagnosis and treatment options, were helpful. However, similar to the findings of Finch and Gibson (2009), all participants indicated that they longed for more information. Education provided in health care settings could be enhanced to include information about caregiving tasks and other relevant topics for family members. It is vital to have knowledge on age-appropriate conversation types. However, more research needs to be conducted regarding age-appropriate conversations to determine precise age-appropriate communication strategies that providers and parents should use.

Expanding Support With MedFT

Based on the findings, there are improvements that medical staff can make, such as talking directly to family members and providing clear and accurate information. This may require increased training in working with terminally ill patients and the entire family. However, the already heavy demands of doctors and nurses may not allow for lengthy conversations to provide emotional support and discuss end-of-life issues. Rather, extended support may come from other community resources such as friends/family, support groups, and MedFTs or other behavioral health consultants.

MedFTs are uniquely poised to address the barriers and challenges mentioned above and can further facilitate the inclusion of family members over the course of treatment (Doherty et al., 2014; McDaniel et al., 2014). A lack of medical knowledge, distress caused by their family member’s illness, and inexperience negotiating with medical professionals may leave the families confused and frustrated. MedFTs aid patients and their families in making decisions about medical care and communicating their needs to medical professionals (Doherty et al., 2014). Clinicans who identify as MedFTs and work in medical settings can educate health care providers about their roles, thus taking some pressures off the medical provider, and encourage consultations to be part of patient care practices (Zubatsky et al., 2017). Furthermore, MedFTs can help terminally ill patients and their families adjust to the changes and stress that accompany the diagnosis and prepare family members for the eventual death of their loved one (Fox et al., 2012; Zaider & Steinglass, 2018).

In addition, MedFTs strive to enhance agency and communion in patients and their families. Agency refers to helping patients engage actively in their health care, while communion strives for patients’ sense of belonging and community during their illness (McDaniel et al., 1992). These constructs support the notion that patient well-being is more than merely patient-led care; they affirm that the patient is more important than their illness and that patient care involves more than just treating an illness or reducing symptoms (Dahlberg et al., 2009). Furthermore, treatment involves a broad conceptualization of patient well-being, which includes patients’ family members as well. Through agency and communion, MedFTs can help families take control of their health care and connect them to support systems in the community. Often, when the medical condition cannot be treated, treatment should focus on increasing agency and communion in patients and their families (Doherty et al., 2014).

Limitations and Future Directions

There are a number of limitations that may have affected the research findings. This was a retrospective study based on participants’ recalled memories of past events. Although many studies have demonstrated the value of retrospective studies (Abbott et al., 2016; Euser et al., 2009), critics argue that individuals may not accurately recall past events and states of mind due to cognitive limitations (Nisbett & Ross, 1980). Although there are limitations to retrospective methods, they can be effective in learning about people’s past experiences. Although the average years between death of the parent and interview conducted was fairly short (M = 3.9,SD = 2.93), the results could have more precise memories and recollection of experiences if the interview was conducted shortly after the death (e.g., a few months).

There are limitations with the sample population in this study. The sample was self-selected and thus results may be biased. The study also included the experiences of only nine participants, seven of whom were female. Phenomenological research lends itself to small sample studies, embraces the subjectivity of participants and researchers, and emphasizes understanding of experience and meaning rather than generalizing the findings (Dahl & Boss, 2005). Nevertheless, the transferability of results would be increased with a larger number of participants and a more diverse (i.e., gender, race, and ethnicity) and randomly selected sample. In addition, out of the nine, six participants experienced the death of their mother. Mothers are often seen as the primary caretaker, and the death of a mother may be experienced differently than the death of a father.

This study was conducted by a researcher who has experienced the death of a parent and had hospital involvement during the treatment process. Although this is a potential limitation, heuristic inquiry studies include the personal experience of the researcher(s), which will naturally influence all aspects of the research process: development of the research questions, data collection, analysis, and interpretation of the results (Dahl & Boss, 2005; Douglass & Moustakas, 1985; Moustakas, 1990; West, 2001). In order to enhance the rigor of the study, the research team met regularly and engaged in in-depth conversation about the transcripts, codes, categories, and subcategories, ensuring that an agreement was made between all four research team members.

It is important to note that other factors, in addition to those focused on in this study, may affect the way illness is perceived. These may include family members’ age, personality of the adolescent, birth order, the relationship they had with the deceased parent and the living parent, how long the parent was ill, social support, participants’ attachment styles, and family’s meaning making regarding the illness. Research indicates that attachment styles are associated with characteristic strategies for coping with death (Cusinato et al., 2017; Pistole, 1996; Wayment & Vierthaler, 2002). Future research might look at the relationship between attachment style and adolescents’ experience with parental terminal illness. Additional studies might also include older participants or follow participants longitudinally for a deeper understanding of how death can affect adolescent development beyond young adulthood.

A family’s view and belief system may also influence the way the cancer is coped with and adapted to. For example, a person with cancer may deal with guilt for not taking better care of themselves, question why they engaged in unhealthy behaviors, or wonder why they deserve the illness (McDaniel et al., 2014). Therefore, exploring the meaning making of a family may also shift the way members interact with medical professionals and within the hospital setting.

Although this study provided some information on the interaction between family members of patients in the hospital setting, there is a significant need for additional research that looks at what factors, policies, and procedures can improve the experience for family members of hospital patients. Furthermore, this study focused only on the perspective of the adolescents of ill parents. Future research should include the perspective of the ill parent as well as the medical professionals.

Conclusion

The authors explored the experience of adolescents during parental terminal illness, particularly in relation to their interaction with medical professionals and hospital settings. The findings illustrate how certain types of hospital involvement can impact the way the diagnosis is processed and how death is accepted. Open communication, being available, and taking the adolescent seriously, regardless of age, can result in the adolescent feeling comfortable enough to speak up when necessary, in addition to feeling knowledgeable about the diagnosis, prognosis, and treatment. These findings can aid both mental health providers as well as medical professionals in their interactions with adolescents who are present in the hospital environment during the illness of the parent. Using integrative health care teams, mental health providers and medical professionals can enhance the experience of an adolescent in the hospital.

Footnotes

Acknowledgements

The authors acknowledge the contributions of Hannah Sweeney and Triston Krysztof to this study.

Authors’ Note

Both authors (V.K. and S.T.F.) are coequal first authors.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Vaida Kazlauskaite

Author Biographies

Vaida Kazlauskaite is a doctoral candidate in the Department of Family Social Science at the University of Minnesota, Twin Cities. Her research centers on integrated behavioral health care, medical family therapy, and cancer communication between parent and child.

Stephen T. Fife is an associate professor in the Department of Community, Family, and Addiction Sciences and is the program director of the Couple, Marriage, and Family Therapy Program at Texas Tech University. His teaching and research interests include common factors and change processes in therapy, theory and philosophy in marriage and family therapy, and medical family therapy.

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