563404
research-article2015
JPOXXX10.1177/1043454214563404Journal of Pediatric Oncology NursingPopp et al.
Research
Parents’ Experience With Their Child’s Cancer Diagnosis: Do Hopefulness, Family Functioning, and Perceptions of Care Matter?
Journal of Pediatric Oncology Nursing 1–8 © 2015 by Association of Pediatric Hematology/Oncology Nurses Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1043454214563404 jpo.sagepub.com
Jill M. Popp, PhD1, Mary Conway, MSN, RN, CPHON2, and Ashley Pantaleao, BA3
Abstract Objectives: This study assessed the experience of parents who have a child diagnosed with cancer and whether parental hope, family functioning, and perceptions of care distinguish those parents who have adapted to the diagnosis versus those who have not adapted. Methods: Fifty parents completed an interview about the diagnosis experience and questionnaires about hopefulness, family functioning, and family-centered care. Results: A majority of parents had come to terms with the diagnosis; however, a subset indicated feeling emotionally disengaged from the experience and having persistent thoughts about why this had happened to them. In addition, parents who were having a difficult time adapting reported lower hopefulness and felt that they received more information about support services from medical providers compared with parents who had come to terms with the diagnosis. Conclusions: By recognizing families who continue to struggle with the diagnosis, nurses may be better equipped to approach families and evaluate their needs, including coping and adaptation. Asking parents about their experience can also lead to more appropriate and timely care and referral and allows nurses to provide care that engenders hopefulness. Keywords reaction to diagnosis, hope, family-centered care, family functioning New advances in medication and treatment protocols have led to an 84% 5-year survival rate for young children diagnosed with cancer (Howlader et al., 2014). Despite these advances, the diagnosis of cancer and the treatment process can be traumatic for parents, children, and families. Children with cancer face demanding treatments that involve chemotherapy and/or radiation and medications for side effects. Oftentimes parents are given a great deal of responsibility in the day-to-day care of their child, and a new role as medical caregiver may make them feel overwhelmed (Steele, Long, Reddy, Luhr, & Phipps, 2003). Mothers and fathers often must learn complicated and confusing treatment protocols, monitor medications and their side effects, and communicate with medical staff, as well as continue to provide comfort and support to other family members. In addition to family and friends, the child’s medical team may be viewed as a source of support and comfort for parents during diagnosis and treatment. The current study is a preliminary investigation into the experience of parents who have a child diagnosed with cancer and whether parental hope, family functioning, and perceptions of care distinguish
those parents who have adapted versus not adapted to the diagnosis. Studies of parents’ initial experience with the diagnosis of a pediatric chronic illness commonly found grief and feelings of powerlessness and abandonment (eg, Bowes, Lowes, Warner, & Gregory; 2009; Wennick & Hallstrom, 2006). Some researchers have described the process of resolution/adaptation in stages. For example, parents may feel distressed during the diagnosis phase and eventually move toward adaptation and adjustment (Blacher, 1984; Clubb, 1991). Zimmerman, Bonner, Evans, and Mellins (1999) suggested that families move 1
Connecticut Children’s Medical Center, Hartford CT, and University of Connecticut, Department of Pediatrics, Farmington, CT, USA 2 Center for Cancer and Blood Disorders, Connecticut Children’s Medical Center, Hartford, CT, USA 3 Department of Pain and Palliative Care at Connecticut Children’s Medical Center, Hartford, CT, USA Corresponding Author: Mary Conway, MSN, RN, CPHON, Connecticut Children’s Medical Center, 282 Washington St, Hartford CT 06102, USA. Email: [email protected]
Downloaded from jpo.sagepub.com at HOWARD UNIV UNDERGRAD LIBRARY on March 5, 2015
2
Journal of Pediatric Oncology Nursing
through stages of symptom avoidance, acceptance, compliance, and self-regulation. Research on adult narratives has become an increasingly popular way of understanding how individuals deal with experiences such as the diagnosis of a pediatric chronic illness and how this reflects their beliefs about themselves and others in the family (Charon, 2004; Hyden, 1997). According to the framework of Pianta and Marvin (1993), the idea of resolution is grounded in attachment theory. Having a child diagnosed with a chronic illness may be perceived as a threat that disrupts existing parental representations of attachment and caregiving. Resolution is the process of integrating information and emotion in a way that allows parents to accept the diagnosis and reorganize their caregiving behaviors (Marvin & Pianta, 1996). Resolved parents have moved on from the grieving process and acknowledge a change in intensity of the emotional response to the illness over time. In contrast, parents who are unresolved appear stuck in a pattern of grieving over the diagnosis and can adopt a coping style that could fuel ongoing feelings of distress and preoccupation (Pianta & Marvin, 1993). Resolution status of the parents has been associated with parental stress, type of diagnosis, perceived social support, and the child’s cognitive functions (Lord, Ungerer, & Wastell, 2008; Rentinck, Ketelaar, Jongmans, Lindeman, & Gorter, 2009; Sheeran, Marvin, & Pianta, 1997). There is some evidence to suggest that marital functioning and the quality of the parentchild relationship may distinguish resolution status (Kearny, Britner, Farrell & Robinson, 2011; Marvin & Pianta, 1996; Sheeran et al., 1997) and family functioning (Popp, Robinson, Britner, & Blank, 2014). Giving health care professionals information about parental resolution may lead to changes in services that are more family-centered (Rentinck et al., 2009); still, more research on the characteristics of resolved parents is needed. One idea not well understood in the literature is whether levels of hope and perceptions of care distinguish parental resolution status (eg, resolved vs unresolved). Several definitions of hopefulness (or trait hope) have been described in the literature. There is consensus that hope comprises a cognitive appraisal of information regarding future goals and that it has a motivational quality that can ebb and flow depending on the situation (Folkman, 2010; Groopman, 2005; Snyder et al., 1991). Individuals who report higher hope tend to take on more goals in various life arenas, select tasks that are more challenging, and focus on success rather than failure (Snyder, 1995). According to Snyder et al., (1991), hope is a 2-part entity that is comprised of a sense of successful agency (belief that a goal can be achieved) and pathways (belief that a route for achieving goals can be obtained). For parents of children with chronic illness, hope appears to play a significant role in the adaptation process.
Specifically, hopefulness has been associated in the literature with greater self-efficacy and life satisfaction and less psychological distress in parents of children with chronic illness (Faso, Neal-Beevers, & Carlson, 2013; Mednick et al., 2007; Venning, Eliott, Whitford, & Honnor, 2007). Additionally, parents have indicated that medical providers influence levels of hope. For example, in a qualitative study by Kylmä and Juvakka (2007), parents reported that hope was reflected in their relationships with health care personnel and confidence that they were receiving good care/treatment. Similarly, Salmon et al. (2012) reported that parents relied on their child’s oncologist to help them feel hopeful by the information that was provided (or withheld) about care. The present study assessed parental hope in relation to resolution status and perceptions of family-centered care. Family-centered care (FCC) is a philosophy and method of health care service delivery that emphasizes a partnership between providers, patients, and families (Klassen et al., 2009). Central to FCC are dignity and respect, information sharing, participation, and collaboration (Institute for Family Centered Care, 2008). Studies of FCC have shown that parents feel validated and comforted by their health care team when the team listens to the family (Buford, 2005; Kuhlthau et al., 2011). Additionally, FCC has been associated with higher levels of parental satisfaction with services and better parental and child psychological well-being in families of children with special health care needs (King, King, Rosenbaum, & Goffin, 1999; Kuhlthau et al., 2011). While most families alter roles and responsibilities to accommodate the needs of caring for a child with cancer, these changes seem to affect families differently (Herzer et al., 2010; Long & Marsland, 2011; Pai et al., 2007). A collaborative approach to health care delivery that emphasizes the family perspective and experience may result in more tailored services for families who need additional support. Currently, there is a void in the literature on parental resolution to a child’s cancer diagnosis. This study builds upon previous work with other pediatric conditions and parental resolution by incorporating trait hope and perceptions of FCC as possible variables that distinguish resolution. In the current study, we theorized that parents’ experience and reaction to their child’s cancer diagnosis will influence and be influenced by individual characteristics (eg, hopefulness), family characteristics (eg, family functioning), and perceptions of the health care team (eg, FCC) where their child is being treated. We hypothesize that independent of illness characteristics (eg, severity, number of hospitalizations, time since diagnosis) and child age, parents who lack resolution about the diagnosis will report lower levels of hope, family functioning, and FCC.
Downloaded from jpo.sagepub.com at HOWARD UNIV UNDERGRAD LIBRARY on March 5, 2015
3
Popp et al.
Methods Participants Participants included 50 parents (46 mothers, 4 fathers) of children under age 18 (mean age, 8 years) receiving treatment for pediatric cancer. The mean age of parents was 37.6 years. The sample included parents who were white (66%), black (16%), hispanic (8%), biracial (6%), and asian (4%). A majority of participants were predominantly living in households where parents were married (64%) and represented middle-class incomes (59% reported household annual incomes ≥$40,000). Twenty-five children (50%) with cancer had been diagnosed with leukemia, 15 (30%) with a solid tumor, 6 (12%) with a central nervous system tumor, and 4 (8%) with lymphoma. Thirtyone (62%) children had been in treatment at least 1 year. Parents of children with cancer under the age of 18 were recruited from the oncology department at a children’s hospital in the northeast United States. Inclusion criteria for participation in this study were (a) primary parent(s) accompanying child to the clinic, (b) child’s illness duration of at least 1 month, (c) child in active treatment, and (d) sufficient mastery of English to complete study questionnaires.
Measures Demographic Form. A demographic form was completed by the primary caregiver and included basic demographics, recent medical history for the child (eg, number of hospitalizations, time since diagnosis, medications), and perception of the child’s illness severity. Participants responded to illness severity on a 4-point scale ranging from 0 (not that severe) to 3 (very severe). The mean severity rating for this sample was 2.1 (SD, 0.78). Parental Resolution. The Reaction to Diagnosis Interview (RDI; Pianta & Marvin, 1993) was administered by a trained research assistant to assess parents’ feelings and thoughts about their child’s diagnosis. The RDI classifies a parent’s resolution to his or her child’s diagnosis as either resolved or unresolved. To be classified as resolved, a parent must indicate some change in feelings since his or her child’s diagnosis that indicates the parent has moved on from the trauma or disorganization that often occurs at diagnosis. The full interview can be found in Marvin and Pianta(1996). In general, interviews lasted 10 minutes and were videotaped for coding purposes. Several studies using the RDI demonstrated adequate interrater reliability (eg, Pianta, Marvin, Britner, & Borowitz, 1996). In the current study, the first author and a research assistant who received extensive training on the RDI independently coded an initial set of 35 RDIs for
reliability. Of the 35 RDIs classified independently by these 2 coders, an agreement level of 88% (kappa = 0.76; P < .001) was initially achieved. Consensus was reached for all discrepancies. The final 15 RDIs were coded by the research assistant. Parental Hope. The Trait Hope Scale is a 12-item selfreport measure of trait hopefulness (Snyder, 1995). Participants responded to questions on a 4-point scale (1 = definitely false to 4 = definitely true). This measure has been used with parents who have a child with a pediatric condition (Maikranz, Steele, Dreyer, Stratman, & Bovaird, 2007). The Trait Hope Scale includes 2 subscales: Agency Hope (beliefs about initiating and maintaining movement toward goals) and Pathway Hope (beliefs in one’s capabilities to produce workable strategies toward goals). The 2 subscales together make up a total hope scale (Snyder, 1995). A total score under 25 is considered low hope. Previous research has indicated adequate internal consistency and test-retest reliability (Maikranz et al., 2007). Family Functioning. Family functioning was assessed using the Family Assessment Device (FAD; Miller et al., 1994). The FAD is a 60-item measure based on the McMaster Model of family assessment/functioning. Seven subscales are generated from the FAD; for this study, the 12-item General Functioning subscale was used. The FAD has been extensively used in pediatric studies and has adequate reliability and validity (Miller et al., 1994). Family-Centered Care. Family-centered care was measured by the Measure of Processes of Care (MPOC-20), which is a 20-item survey. Responses are based on a 7-point Likert scale ranging from 7 (a very great extent) to 1 (not at all) (King, King, & Rosenbaum, 2004). Parents are asked to think about the people who work directly with their child from the health care organization (eg, doctors, nurses, parking services, food services). Some examples of questions include “In the past year, to what extent do the people who work with your child help you feel competent as a parent” and “in the past year, to what extent does the organization where you receive services provide opportunities for the entire family to obtain information” (King et al., 2004). The MPOC-20 has been shown to be reliable and valid with parents who have a child diagnosed with cancer (Klassen et al., 2009). The 5 subscales generated from the MPOC-20 are Enabling and Partnership, Providing General Information, Providing Specific Information, Coordinated and Comprehensive Care, and Respectful and Supportive Care. There is no total score for this measure.
Downloaded from jpo.sagepub.com at HOWARD UNIV UNDERGRAD LIBRARY on March 5, 2015
4
Journal of Pediatric Oncology Nursing
Table 1. Means and Standard Deviations for Parent Questionnaires.
General family functioning Agency hope Pathway hope FCC—partnering FCC—general information FCC—specific information FCC—coordinated care FCC—respect
Mean
SD
3.20 12.66 13.01 6.31 5.41 5.97 6.18 6.34
0.58 1.68 1.70 0.80 1.26 1.07 0.80 0.82
Procedures Eligible participants were identified from a clinic roster by the primary and co-investigators. Project staff approached parents in the waiting room or in the treatment room at the hospital. The study was described to the parent, and consent was obtained. After informed consent was obtained, the parent completed the RDI and study questionnaires. Interviews were videotaped for coding purposes. Each parent was provided a $20 gift card for participating in the study. All procedures complied with institutional review board requirements.
Results Descriptive Data and Correlations Means and standard deviations can be found in Table 1. In general, parents reported above-average levels of family functioning (Epstein, Baldwin, & Bishop, 1983) and perceptions of FCC (King et al., 2004). Additionally, parents had average levels of hope according to levels established in previous research (Snyder, 1995). Pearson correlation coefficients were run between parent measures. Significant correlations were found between family functioning and agency hope (r = 0.32; P = .02) and family functioning and pathway hope (r = 0.34; P = .01).
Percentage of Resolved Versus Unresolved on Reaction to Diagnosis The results of the RDIs indicated that 56% (n = 28) of parents were resolved and 44% (n = 22) were unresolved with their child’s diagnosis. Time since diagnosis (χ21,49 = 1.91, P = .24), number of hospitalizations (t = −0.68; P = .49), and child age (t = .86; P = .39) did not distinguish resolved versus unresolved parents. Unresolved parents did report greater perceived severity that approached significance (t = −01.98; P = .05); thus, severity was used as a covariate in subsequent analyses. Interviews with
resolved mothers were characterized by coming to terms with the diagnosis despite the shock and sadness that accompanied learning that their child had cancer. For example, when one resolved mother from the current study talked about her son and his diagnosis, she reflected on the realization that something was wrong, stating, “We thought he just sprained his ankle but after a couple of weeks we realized it was maybe something else. When the word ‘cancer’ was brought up I was shocked and overwhelmed but these are the cards we have been dealt.” She continued after being asked about specifics of hearing the final diagnosis: “We came in [to the clinic] thinking we were going to do additional blood work and then they told us the diagnosis and it was a whirlwind. We were being admitted, not just here for a visit, we were not going home. I was shocked and sad, you just can’t believe it.” She indicated that her feelings have changed for the better: “It is what it is. Our life is different than others but it is just something that we do. I try not to focus on why, we don’t really know why. I do believe that what he is going through will make him a stronger person. I believe it will benefit him in the future. He is the strongest person I know and he is only 4 [years old].” Unresolved interviews were characterized by recognition that feelings and thoughts about the diagnosis have not changed and that the parents continue to be preoccupied with the reasons why their child has cancer. For example, one unresolved mother explained, “I still have waves of sadness. It will hit me at times and I still feel horror over it. I am also angry over the diagnosis and ask ‘why’ all the time. The anger at the diagnosis does come up for me. I mean, we are in the day to day of it and dealing with side effects. I wonder why all the time. Like, I wonder what happened to his genetic makeup to cause this.”
Resolution Status and Hope, Family Functioning, and FCC Analyses of covariance were run to determine whether parent report of family functioning, hope, and FCC distinguished resolution status. A significant effect was found for agency hope (F = 4.53; P = .03) and for pathway hope (F = 5.04; P = .03). Specifically, unresolved parents reported significantly less agency hope (ie, belief that a goal can be achieved) and pathway hope (ie, belief that a route for achieving goals can be obtained) compared with resolved mothers. No significant findings emerged for family functioning. A significant effect was found for general information (F = 7.05, P = .01) on the MPOC-20, with unresolved parents reporting greater perceptions of receiving general information compared with resolved parents. See Table 2 for means and standard deviations.
Downloaded from jpo.sagepub.com at HOWARD UNIV UNDERGRAD LIBRARY on March 5, 2015
5
Popp et al. Table 2. Means and Standard Deviations of Parental SelfReported Measures by Resolution Status.
Agency hope Pathway hope General family functioning FCC—partnering FCC—general information FCC—specific information FCC—coordinated care FCC—respect
Resolved (n = 28)
Unresolved (n = 22)
P
13.14 (1.26) 13.35 (1.68) 3.33 (0.52) 6.26 (0.97) 5.09 (1.35) 5.82 (1.19) 6.12 (0.91) 6.30 (0.93)
12.14 (1.95) 12.50 (1.67) 3.02 (0.60) 6.33 (0.54) 5.91 (0.65) 6.16 (0.90) 6.30 (0.63) 6.50 (0.56)
.03 .03 .07 .80 .01 .19 .33 .35
Discussion The main goal of this study was to understand parents’ state of mind regarding resolution of the difficult feelings associated with having a child diagnosed with cancer. Second, we sought to investigate whether hopefulness, family functioning, and perceptions of care distinguish parents who have worked through those difficult feelings compared with those who are stuck in feelings of grief and preoccupation with the diagnosis. We found that 44% of parents were unresolved regarding their child’s diagnosis, regardless of time since diagnosis, number of hospitalizations, and age of their child. This is consistent with previous research that found comparable percentages with physical (Barnett et al., 2006; Marvin & Pianta, 1996; Popp, Robinson, Britner, & Blank, 2014) and psychiatric populations (Kearney, Britner, Farrell, & Robinson, 2011). Unresolved reactions in the current sample were evident when parents described thoughts and feelings that interfered with parent-child interactions (eg, “I couldn’t even look at her or be around her after the diagnosis”), emotional disengagement from the experience (eg, “I didn’t feel anything about the diagnosis”), and the continued search for understanding why this had happened to them (eg, “I wonder was it something I did while pregnant, was it something I gave to her, I wonder why all the time”). Our results related to hopefulness also suggest that resolution may be a resilience factor for coping with a child’s illness, similar to resilience factors in the stress and coping framework (Wallandar & Varni, 1998). In the current study, unresolved parents reported lower agency and pathway hopefulness compared with resolved parents. This finding is inconsistent with that of Lord et al. (2008), who found no differences between resolution status and personal hopefulness. These contradictory findings could be due in part to the measures used or illness characteristics (eg, phenylketonuria (PKU) vs pediatric cancer). In the present study, hopefulness was measured within a goal-setting framework, which may tap into the processes
of resolution more closely. Specifically, both agency and pathway hope suggest that parents have the determination to meet goals along with a sense of being able to create a plan to meet those goals. Similarly, resolved parents describe their experience in a positive sense and believe that they can manage challenges in their future (Marvin & Pianta, 1996). Previous research has demonstrated that unresolved parents report increased distress, characteristics common to parents who report lower hopefulness (Lewis & Kliewer, 1996; Mednick et al., 2007). Finally, there is evidence that hope buffers the relationship between stress and parental adjustment (Horton & Wallander, 2001); future researchers may want to consider whether resolution moderates this relationship as well. We also hypothesized that resolved parents would have greater perceptions of FCC. Only one of the subscales was significant, and it was contrary to our hypothesis: Unresolved parents had greater perceptions of receiving general information from health care providers. Examples of questions on the General Information subscale include whether staff gave the entire family information (eg, verbal, written), whether services were offered within the organization/community, and whether families received information about how to contact other parents for support. Other studies incorporating the MPOC-20 have reported low means on this subscale (eg, Dickens, Matthews, & Thompson, 2010; Jeglinsky, AuttiRamo, & Brogren Carlberg, 2011). One explanation for this finding in the current study is that unresolved parents may be soliciting information from health care providers, which is consistent with the persistent distress and preoccupied nature of some unresolved parents (Marvin & Pianta, 1996), leading to a decreased ability to integrate information.It may also be that health care providers are recognizing unresolved characteristics and the increased needs of these parents and are providing more education and information regarding care in an effort to increase coping and well-being. While this is likely an informal assessment made by the health care team (nurses, doctors, etc), there is recognition in the pediatric literature that formal, systematic screening can facilitate support services based on family needs (Kazak et al., 2011). Several strengths and limitations of this study will help guide future research. Strengths of this study include the use of interviews rather than reliance on self-report questionnaires of adaptation to illness. This allowed for a comprehensive understanding of the parent experience and provided context to parental concerns (Creswell, Klassen, Plano Clark, & Smith, 2011). Additionally, we used a measure of family centeredness that had been previously assessed for reliability and validity in a pediatric oncology sample (Klassen et al., 2008). Commentaries on FCC indicate that using established measures has the potential to advance knowledge in this area (Kuo et al., 2012).
Downloaded from jpo.sagepub.com at HOWARD UNIV UNDERGRAD LIBRARY on March 5, 2015
6
Journal of Pediatric Oncology Nursing
One limitation of this study is the lack of report from medical providers about their family-centered behaviors (eg, including the family in decisions, giving information about community support programs) or using observations of patient-provider encounters to evaluate familycenteredness. In addition, only 4 fathers completed RDI in this study as the primary parent who brought the child to the clinic. Future studies should incorporate a separate larger sample of fathers to understand the emotional impact of the diagnosis on them. Finally, it is likely that resolution is an ongoing process that may be dependent on the child’s treatment course; therefore, future studies should incorporate multiple assessments of resolution to capture this process overtime. Several implications for nursing practice emerged from this study. First, the narratives from parents inform nurses about the emotional experience of families whose child is diagnosed with cancer—in particular, the impact of the illness on the family since diagnosis. This study also highlights the practice of FCC and how this care is perceived by parents who are unresolved versus resolved. By recognizing the characteristic behaviors of resolution, nurses may be better equipped to approach and evaluate a family’s needs, including coping, adaptation, and barriers and response to learning. This can lead nurses to develop and provide families with more individualized care, education, and support. It may also help nurses discriminate between educational and emotional needs and thus provide more appropriate and timely care and referral. Further, this study found that unresolved parents report less hopefulness. It can be postulated that if health care providers do in fact have an influence on levels of hope in families (Hinds, Martin, & Vogel, 1987; Kylmä & Juvakka, 2007; Salmon et al., 2012) and hope has a role in the process of adaptation, then determining ways of providing care that engenders hopefulness in families may help move unresolved families toward resolution. Acknowledgments We gratefully acknowledge Renee C. B. Manworren, PhD, APRN, BC, PCNS-BC, FAAN, and Jacqueline M. McGrath, PhD, RN, FNAP, FAAN, for their support and guidance throughout this project and to all the families who agreed to participate.
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.
References Barnett, D., Clements, M., Kaplan-Estrin, M., McCaskill, J. W., Hunt, K. H., Butler, C. M., . . . Janisse, H. C. (2006). Maternal resolution of child diagnosis: Stability and relations with child attachment across the toddler to preschooler transition. Journal of Family Psychology, 20, 100-107. Bowes, S., Lowes, L., Warner, J., & Gregory, J. W. (2009). Chronic sorrow in parents of children with type 1 diabetes. Journal of Advanced Nursing, 65, 992-1000. Blacher, J. (1984). Sequential stages of parental adjustment to the birth of a child with handicaps: Fact or artifact? American Journal of Mental Deficiency, 89, 653-656. Buford, T. A. (2005). School-age children with asthma and their parents: Relationships with health care providers. Issues in Comprehensive Pediatric Nursing, 28, 153-162. Charon, R. (2004). Narrative and medicine. New England Journal of Medicine, 350, 862-864. Clubb, R. L. (1991). Chronic sorrow: Adaptation patterns of parents with chronically ill children. Pediatric Nursing, 17, 462-466. Creswell, J. W., Klassen, A. C., Plano Clark, V. L., & Clegg Smith, K. (2011). Best practices for mixed methods research in the health sciences. Retrieved from Office of Behavioral and Social Sciences Research (OBSSR) website: http://obssr.od.nih.gov/mixed_methods_research/pdf/ Best_Practices_for_Mixed_Methods_Research.pdf Dickens, K., Matthews, L. R., & Thompson, J. (2010). Parent and service providers’ perceptions regarding the delivery of family-centred paedriatric rehabilitation services in a children’s hospital. Child: Care, Health and Development, 37, 64-73. Epstein, N. B., Baldwin, L. M., & Bishop, D. S. (1983). The McMaster Family Assessment Device. Journal of Marital and Family Therapy, 9, 171-190. Faso, D. J., Neal-Beevers, A. R., & Carlson, C. L. (2013). Vicarious futurity, hope, and well-being in parents of children with autism spectrum disorder. Research in Autism Spectrum Disorders, 7, 288-297. Folkman, S. (2010). Stress, coping, and hope. Psycho-Oncology, 19, 901-908. Groopman, J. The anatomy of hope. New York: Random House; 2004. Herzer, M., Godiwala, N., Hommel, K. A., Driscoll, K., Mitchell, M., Crobsy, L. E., . . . Modi, A. C. (2010). Family functioning in the context of pediatric chronic conditions. Journal of Developmental and Behavioral Pediatrics, 31, 26-34. Hinds, P., Martin, J., & Vogel, R. J. (1987). Nursing strategies to influence adolescent hopefulness during oncologic illness. Journal of the Association of Paediatric Oncology Nurses, 4, 14-22. Horton, T. V., & Wallander, J. L. (2001). Hope and social support as resilience factors against psychological distress of mothers who care for children with chronic physical conditions. Rehabilitation Psychology, 46, 382-399. Howlader, N., Noone, A. M., Krapcho, M., Garshell, J., Miller, D., Altekruse, S. F., . . . Cronin, K. A. (Eds.). (2014). SEER cancer statistics review, 1975-2011. Retrieved from National Cancer Institute website: http://seer.cancer.gov/ csr/1975_2011/
Downloaded from jpo.sagepub.com at HOWARD UNIV UNDERGRAD LIBRARY on March 5, 2015
7
Popp et al. Hyden, L. C. (1997). Illness and narrative. Sociology of Healthy and Illness, 19, 48-64. Institute for Patient- and Family-Centered Care. (2008). Partnering with patients and families to design a patient-and family-centered health care system. Retrieved from http:// www.ipfcc.org/pdf/PartneringwithPatientsandFamilies.pdf Jeglinsky, I., Autti-Ramo, I., & Brogren Carlberg, E. (2011). Two sides of the mirror: Parents’ and service providers’ view on the family-centredness of care for children with cerebral palsy. Child: Care, Health, and Development, 38, 79-86. Kazak, A. E., Barakat, L. P., Hwang, W., Ditaranto, S., Biros, D., Beele, D., . . . Reilly, A. (2011). Association of psychological risk screening in pediatric cancer with psychosocial services provided. Psycho-Oncology, 20, 715-723. Kearny, J., Britner, P., Farrell, A., & Robinson, J. (2011). Mothers’ resolution of their young child’s psychiatric diagnosis: Associations with child, parent, and relationship characteristics. Child Psychiatry and Human Development, 42, 334-348. King, S., King, G., & Rosenbaum, P. (2004). Evaluating health service delivery to children with chronic conditions and their families: Development of a refined measure of processes of care (MPOC-20). Children’s Health Care, 33, 35-37. King, G., King, S., Rosenbaum, P., & Goffin, R. (1999). Familycentered caregiving and well- being of parents of children with disabilities: Linking process with outcome. Journal of Pediatric Psychology, 24, 41-53. Klassen, A. F., Dix, D. D., Cano, S. J., Papsdorf, M. M., Sung, L. L., & Klaassen, R. J. (2009). Evaluating family-centred service in paediatric oncology with the measure of processes of care (MPOC-20). Child: Care, Health and Development, 35(1), 16-22. Kuhlthau, K. A., Bloom, S., Van Cleave, J., Knapp, A. A., Romm, D., Klatka, K., . . . Perrin, J. M. (2011). Evidence for family-centered care for children with special health care needs: A systematic review. Academic Pediatrics, 11, 136-143. Kuo, D. Z., Houtrow, A. J., Arango, P., Kuhlthau, K. A., Simmons, J. M., & Neff, J. M. (2012). Family-centered care: Current applications and future directions in pediatric health care. Journal of Maternal Child Health, 16, 297-305. Kylmä, J., & Juvakka, T. (2007). Hope in parents of adolescents with cancer—Factors endangering and engendering parental hope. European Journal of Oncology Nursing, 11(3), 262-271. Lewis, H. A., & Kliewer, W. (1996). Hope, coping and adjustment among children with sickle cell disease: Tests of mediator and moderator models. Journal of Pediatric Psychology, 21, 25-41. Long, K. A., & Marsland, A. L. (2011). Family adjustment to childhood cancer: A systematic review. Clinical Child and Family Psychology Review, 14, 57-88. Lord, B., Ungerer, J., & Wastell, C. (2008). Implications of resolving the diagnosis of PKU for parents and children. Journal of Pediatric Psychology, 33, 855-866. Maikranz, J. M., Steele, R. G., Dreyer, M. L., Stratman, A. C., & Bovaird, J. A. (2007). The relationship of hope and illness-related uncertainty to emotional adjustment and
adherence among pediatric renal and liver transplant recipients. Journal of Pediatric Psychology, 32(5), 571-581. Marvin, R. S., & Pianta, R. C. (1996). Mothers’ reactions to their child’s diagnosis: Relations with security of attachment. Journal of Clinical Child Psychology, 25, 436-445. Miller, I. W., Kabacoff, R. I., Epstein, N. B., Bishop, D. S., Keitner, G. I., Baldwin, L. M., & van der Spuy, H. I. (1994). The development of a clinical rating scale for the McMaster model of family functioning. Family Process, 33, 53-69. Mednick, L., Cogen, F., Henderson, C., Rohrbeck, C. A., Kitessa, D., & Streisand, R. (2007). Hope more, worry less: Hope as a potential resilience factor in mothers of very young children with type 1 diabetes. Children’s Healthcare, 26, 385-396. Pai, A. L. H., Greenley, R. N., Lewandowski, A., Drotar, D., Youngstrom, E., & Peterson, C. C. (2007). A meta-analytic review of the influence of pediatric cancer on parent and family functioning. Journal of Family Psychology, 21, 407-415. Pianta, R. C., & Marvin, R. S. (1993). Manual for classification of the reaction to diagnosis interview. Unpublished manuscript, University of Virginia. Pianta, R. C., Marvin, R. S., Britner, P. A., & Borowitz, K. C. (1996). Mothers’ resolution of their children’s diagnosis: Organized patterns of caregiving representations. Special issue: The caregiving system. Infant Mental Health Journal, 17, 239-256. Popp, J. M., Robinson, J. L., Britner, P.A., & Blank, T.O. (2014). Parent adaptation and family functioning in relation to narratives of children with chronic illness. Journal of Pediatric Nursing, 29, 58-64. Rentinck, I., Ketelaar, M., Jongmans, M., Lindeman, E., & Gorter, J. (2009). Parental reactions following the diagnosis of cerebral palsy in their young child. Journal of Pediatric Psychology, 34(6), 671-676. Salmon, P., Hill, J., Ward, J., Gravenhorst, K, Eden, T., & Young, B. (2012). Faith and protection: The construction of hope by parents of children with leukemia and their oncologists. The Oncologist, 17, 398-404. Sheeran, T., Marvin, R. S., & Pianta, R. C. (1997). Mothers’ resolution of their child’s diagnosis and self-reported measures of parenting stress, marital relations, and social support. Journal of Pediatric Psychology, 22, 197-212. Snyder, C. R. (1995). Conceptualizing, measuring, and nurturing hope. Journal of Counseling & Development, 73(3), 355-360. Snyder, C. R., Harris, C., Anderson, J. R., Holleran, S. A., Irving, L. M., Sigmon, S. T., . . . Harney, P. (1991). The will and the ways: Development and validation of an individual-differences measure of hope. Journal of Personality and Social Psychology, 60, 570-585. Steele, R. G., Long, A., Reddy, K. A., Luhr, M., & Phipps, S. (2003). Changes in maternal distress and child-rearing strategies across treatment for pediatric cancer. Journal of Pediatric Psychology, 28, 447-452. Venning, A. J., Eliott, J., Whitford, H., & Honnor, J. (2007). The impact of a child’s chronic illness on hopeful thinking in children and parents. Journal of Social and Clinical Psychology, 26, 708-727.
Downloaded from jpo.sagepub.com at HOWARD UNIV UNDERGRAD LIBRARY on March 5, 2015
8
Journal of Pediatric Oncology Nursing
Wallander, J. L., & Varni, J. W. (1998). Effects of pediatric chronic physical disorders on child and family adjustment. Journal of Child Psychology and Psychiatry, 39, 29-46. Wennick, A., & Hallstrom, I. (2006). Swedish families’ lived experience when a child is first diagnosed as having insulin-dependent diabetes mellitus: An ongoing learning process. Journal of Family Nursing, 12, 368-389. Zimmerman, B. J., Bonner, S., Evans, D., & Mellins, R. B. (1999). Self-regulating childhood asthma: A developmental model of family change. Health Education & Behavior, 26, 55-71.
Author Biographies Jill M. Popp, PhD, is a Research Scientist at Connecticut Children’s Medical Center, Hartford, and Assistant Professor in
the Department of Pediatrics at the University of Connecticut School of Medicine. The focus of her research program is on parents’ reaction to their child’s diagnosis and how this influences individual and family functioning. Mary Conway, MSN, RN, CPHON, is a Pediatric Clinical Nurse Specialist in the Center for Cancer and Blood Disorders at Connecticut Children’s Medical Center in Hartford. Her research interests are in pediatric oncology and family-centered coping, care, and education. Ashley Pantaleao, BA, is a Research Assistant in the Department of Pain and Palliative Care at Connecticut Children’s Medical Center, Hartford. Her research interests include the effects of chronic illness on parent-child relationship quality.
Downloaded from jpo.sagepub.com at HOWARD UNIV UNDERGRAD LIBRARY on March 5, 2015
research-article2015
JPOXXX10.1177/1043454214563404Journal of Pediatric Oncology NursingPopp et al.
Research
Parents’ Experience With Their Child’s Cancer Diagnosis: Do Hopefulness, Family Functioning, and Perceptions of Care Matter?
Journal of Pediatric Oncology Nursing 1–8 © 2015 by Association of Pediatric Hematology/Oncology Nurses Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1043454214563404 jpo.sagepub.com
Jill M. Popp, PhD1, Mary Conway, MSN, RN, CPHON2, and Ashley Pantaleao, BA3
Abstract Objectives: This study assessed the experience of parents who have a child diagnosed with cancer and whether parental hope, family functioning, and perceptions of care distinguish those parents who have adapted to the diagnosis versus those who have not adapted. Methods: Fifty parents completed an interview about the diagnosis experience and questionnaires about hopefulness, family functioning, and family-centered care. Results: A majority of parents had come to terms with the diagnosis; however, a subset indicated feeling emotionally disengaged from the experience and having persistent thoughts about why this had happened to them. In addition, parents who were having a difficult time adapting reported lower hopefulness and felt that they received more information about support services from medical providers compared with parents who had come to terms with the diagnosis. Conclusions: By recognizing families who continue to struggle with the diagnosis, nurses may be better equipped to approach families and evaluate their needs, including coping and adaptation. Asking parents about their experience can also lead to more appropriate and timely care and referral and allows nurses to provide care that engenders hopefulness. Keywords reaction to diagnosis, hope, family-centered care, family functioning New advances in medication and treatment protocols have led to an 84% 5-year survival rate for young children diagnosed with cancer (Howlader et al., 2014). Despite these advances, the diagnosis of cancer and the treatment process can be traumatic for parents, children, and families. Children with cancer face demanding treatments that involve chemotherapy and/or radiation and medications for side effects. Oftentimes parents are given a great deal of responsibility in the day-to-day care of their child, and a new role as medical caregiver may make them feel overwhelmed (Steele, Long, Reddy, Luhr, & Phipps, 2003). Mothers and fathers often must learn complicated and confusing treatment protocols, monitor medications and their side effects, and communicate with medical staff, as well as continue to provide comfort and support to other family members. In addition to family and friends, the child’s medical team may be viewed as a source of support and comfort for parents during diagnosis and treatment. The current study is a preliminary investigation into the experience of parents who have a child diagnosed with cancer and whether parental hope, family functioning, and perceptions of care distinguish
those parents who have adapted versus not adapted to the diagnosis. Studies of parents’ initial experience with the diagnosis of a pediatric chronic illness commonly found grief and feelings of powerlessness and abandonment (eg, Bowes, Lowes, Warner, & Gregory; 2009; Wennick & Hallstrom, 2006). Some researchers have described the process of resolution/adaptation in stages. For example, parents may feel distressed during the diagnosis phase and eventually move toward adaptation and adjustment (Blacher, 1984; Clubb, 1991). Zimmerman, Bonner, Evans, and Mellins (1999) suggested that families move 1
Connecticut Children’s Medical Center, Hartford CT, and University of Connecticut, Department of Pediatrics, Farmington, CT, USA 2 Center for Cancer and Blood Disorders, Connecticut Children’s Medical Center, Hartford, CT, USA 3 Department of Pain and Palliative Care at Connecticut Children’s Medical Center, Hartford, CT, USA Corresponding Author: Mary Conway, MSN, RN, CPHON, Connecticut Children’s Medical Center, 282 Washington St, Hartford CT 06102, USA. Email: [email protected]
Downloaded from jpo.sagepub.com at HOWARD UNIV UNDERGRAD LIBRARY on March 5, 2015
2
Journal of Pediatric Oncology Nursing
through stages of symptom avoidance, acceptance, compliance, and self-regulation. Research on adult narratives has become an increasingly popular way of understanding how individuals deal with experiences such as the diagnosis of a pediatric chronic illness and how this reflects their beliefs about themselves and others in the family (Charon, 2004; Hyden, 1997). According to the framework of Pianta and Marvin (1993), the idea of resolution is grounded in attachment theory. Having a child diagnosed with a chronic illness may be perceived as a threat that disrupts existing parental representations of attachment and caregiving. Resolution is the process of integrating information and emotion in a way that allows parents to accept the diagnosis and reorganize their caregiving behaviors (Marvin & Pianta, 1996). Resolved parents have moved on from the grieving process and acknowledge a change in intensity of the emotional response to the illness over time. In contrast, parents who are unresolved appear stuck in a pattern of grieving over the diagnosis and can adopt a coping style that could fuel ongoing feelings of distress and preoccupation (Pianta & Marvin, 1993). Resolution status of the parents has been associated with parental stress, type of diagnosis, perceived social support, and the child’s cognitive functions (Lord, Ungerer, & Wastell, 2008; Rentinck, Ketelaar, Jongmans, Lindeman, & Gorter, 2009; Sheeran, Marvin, & Pianta, 1997). There is some evidence to suggest that marital functioning and the quality of the parentchild relationship may distinguish resolution status (Kearny, Britner, Farrell & Robinson, 2011; Marvin & Pianta, 1996; Sheeran et al., 1997) and family functioning (Popp, Robinson, Britner, & Blank, 2014). Giving health care professionals information about parental resolution may lead to changes in services that are more family-centered (Rentinck et al., 2009); still, more research on the characteristics of resolved parents is needed. One idea not well understood in the literature is whether levels of hope and perceptions of care distinguish parental resolution status (eg, resolved vs unresolved). Several definitions of hopefulness (or trait hope) have been described in the literature. There is consensus that hope comprises a cognitive appraisal of information regarding future goals and that it has a motivational quality that can ebb and flow depending on the situation (Folkman, 2010; Groopman, 2005; Snyder et al., 1991). Individuals who report higher hope tend to take on more goals in various life arenas, select tasks that are more challenging, and focus on success rather than failure (Snyder, 1995). According to Snyder et al., (1991), hope is a 2-part entity that is comprised of a sense of successful agency (belief that a goal can be achieved) and pathways (belief that a route for achieving goals can be obtained). For parents of children with chronic illness, hope appears to play a significant role in the adaptation process.
Specifically, hopefulness has been associated in the literature with greater self-efficacy and life satisfaction and less psychological distress in parents of children with chronic illness (Faso, Neal-Beevers, & Carlson, 2013; Mednick et al., 2007; Venning, Eliott, Whitford, & Honnor, 2007). Additionally, parents have indicated that medical providers influence levels of hope. For example, in a qualitative study by Kylmä and Juvakka (2007), parents reported that hope was reflected in their relationships with health care personnel and confidence that they were receiving good care/treatment. Similarly, Salmon et al. (2012) reported that parents relied on their child’s oncologist to help them feel hopeful by the information that was provided (or withheld) about care. The present study assessed parental hope in relation to resolution status and perceptions of family-centered care. Family-centered care (FCC) is a philosophy and method of health care service delivery that emphasizes a partnership between providers, patients, and families (Klassen et al., 2009). Central to FCC are dignity and respect, information sharing, participation, and collaboration (Institute for Family Centered Care, 2008). Studies of FCC have shown that parents feel validated and comforted by their health care team when the team listens to the family (Buford, 2005; Kuhlthau et al., 2011). Additionally, FCC has been associated with higher levels of parental satisfaction with services and better parental and child psychological well-being in families of children with special health care needs (King, King, Rosenbaum, & Goffin, 1999; Kuhlthau et al., 2011). While most families alter roles and responsibilities to accommodate the needs of caring for a child with cancer, these changes seem to affect families differently (Herzer et al., 2010; Long & Marsland, 2011; Pai et al., 2007). A collaborative approach to health care delivery that emphasizes the family perspective and experience may result in more tailored services for families who need additional support. Currently, there is a void in the literature on parental resolution to a child’s cancer diagnosis. This study builds upon previous work with other pediatric conditions and parental resolution by incorporating trait hope and perceptions of FCC as possible variables that distinguish resolution. In the current study, we theorized that parents’ experience and reaction to their child’s cancer diagnosis will influence and be influenced by individual characteristics (eg, hopefulness), family characteristics (eg, family functioning), and perceptions of the health care team (eg, FCC) where their child is being treated. We hypothesize that independent of illness characteristics (eg, severity, number of hospitalizations, time since diagnosis) and child age, parents who lack resolution about the diagnosis will report lower levels of hope, family functioning, and FCC.
Downloaded from jpo.sagepub.com at HOWARD UNIV UNDERGRAD LIBRARY on March 5, 2015
3
Popp et al.
Methods Participants Participants included 50 parents (46 mothers, 4 fathers) of children under age 18 (mean age, 8 years) receiving treatment for pediatric cancer. The mean age of parents was 37.6 years. The sample included parents who were white (66%), black (16%), hispanic (8%), biracial (6%), and asian (4%). A majority of participants were predominantly living in households where parents were married (64%) and represented middle-class incomes (59% reported household annual incomes ≥$40,000). Twenty-five children (50%) with cancer had been diagnosed with leukemia, 15 (30%) with a solid tumor, 6 (12%) with a central nervous system tumor, and 4 (8%) with lymphoma. Thirtyone (62%) children had been in treatment at least 1 year. Parents of children with cancer under the age of 18 were recruited from the oncology department at a children’s hospital in the northeast United States. Inclusion criteria for participation in this study were (a) primary parent(s) accompanying child to the clinic, (b) child’s illness duration of at least 1 month, (c) child in active treatment, and (d) sufficient mastery of English to complete study questionnaires.
Measures Demographic Form. A demographic form was completed by the primary caregiver and included basic demographics, recent medical history for the child (eg, number of hospitalizations, time since diagnosis, medications), and perception of the child’s illness severity. Participants responded to illness severity on a 4-point scale ranging from 0 (not that severe) to 3 (very severe). The mean severity rating for this sample was 2.1 (SD, 0.78). Parental Resolution. The Reaction to Diagnosis Interview (RDI; Pianta & Marvin, 1993) was administered by a trained research assistant to assess parents’ feelings and thoughts about their child’s diagnosis. The RDI classifies a parent’s resolution to his or her child’s diagnosis as either resolved or unresolved. To be classified as resolved, a parent must indicate some change in feelings since his or her child’s diagnosis that indicates the parent has moved on from the trauma or disorganization that often occurs at diagnosis. The full interview can be found in Marvin and Pianta(1996). In general, interviews lasted 10 minutes and were videotaped for coding purposes. Several studies using the RDI demonstrated adequate interrater reliability (eg, Pianta, Marvin, Britner, & Borowitz, 1996). In the current study, the first author and a research assistant who received extensive training on the RDI independently coded an initial set of 35 RDIs for
reliability. Of the 35 RDIs classified independently by these 2 coders, an agreement level of 88% (kappa = 0.76; P < .001) was initially achieved. Consensus was reached for all discrepancies. The final 15 RDIs were coded by the research assistant. Parental Hope. The Trait Hope Scale is a 12-item selfreport measure of trait hopefulness (Snyder, 1995). Participants responded to questions on a 4-point scale (1 = definitely false to 4 = definitely true). This measure has been used with parents who have a child with a pediatric condition (Maikranz, Steele, Dreyer, Stratman, & Bovaird, 2007). The Trait Hope Scale includes 2 subscales: Agency Hope (beliefs about initiating and maintaining movement toward goals) and Pathway Hope (beliefs in one’s capabilities to produce workable strategies toward goals). The 2 subscales together make up a total hope scale (Snyder, 1995). A total score under 25 is considered low hope. Previous research has indicated adequate internal consistency and test-retest reliability (Maikranz et al., 2007). Family Functioning. Family functioning was assessed using the Family Assessment Device (FAD; Miller et al., 1994). The FAD is a 60-item measure based on the McMaster Model of family assessment/functioning. Seven subscales are generated from the FAD; for this study, the 12-item General Functioning subscale was used. The FAD has been extensively used in pediatric studies and has adequate reliability and validity (Miller et al., 1994). Family-Centered Care. Family-centered care was measured by the Measure of Processes of Care (MPOC-20), which is a 20-item survey. Responses are based on a 7-point Likert scale ranging from 7 (a very great extent) to 1 (not at all) (King, King, & Rosenbaum, 2004). Parents are asked to think about the people who work directly with their child from the health care organization (eg, doctors, nurses, parking services, food services). Some examples of questions include “In the past year, to what extent do the people who work with your child help you feel competent as a parent” and “in the past year, to what extent does the organization where you receive services provide opportunities for the entire family to obtain information” (King et al., 2004). The MPOC-20 has been shown to be reliable and valid with parents who have a child diagnosed with cancer (Klassen et al., 2009). The 5 subscales generated from the MPOC-20 are Enabling and Partnership, Providing General Information, Providing Specific Information, Coordinated and Comprehensive Care, and Respectful and Supportive Care. There is no total score for this measure.
Downloaded from jpo.sagepub.com at HOWARD UNIV UNDERGRAD LIBRARY on March 5, 2015
4
Journal of Pediatric Oncology Nursing
Table 1. Means and Standard Deviations for Parent Questionnaires.
General family functioning Agency hope Pathway hope FCC—partnering FCC—general information FCC—specific information FCC—coordinated care FCC—respect
Mean
SD
3.20 12.66 13.01 6.31 5.41 5.97 6.18 6.34
0.58 1.68 1.70 0.80 1.26 1.07 0.80 0.82
Procedures Eligible participants were identified from a clinic roster by the primary and co-investigators. Project staff approached parents in the waiting room or in the treatment room at the hospital. The study was described to the parent, and consent was obtained. After informed consent was obtained, the parent completed the RDI and study questionnaires. Interviews were videotaped for coding purposes. Each parent was provided a $20 gift card for participating in the study. All procedures complied with institutional review board requirements.
Results Descriptive Data and Correlations Means and standard deviations can be found in Table 1. In general, parents reported above-average levels of family functioning (Epstein, Baldwin, & Bishop, 1983) and perceptions of FCC (King et al., 2004). Additionally, parents had average levels of hope according to levels established in previous research (Snyder, 1995). Pearson correlation coefficients were run between parent measures. Significant correlations were found between family functioning and agency hope (r = 0.32; P = .02) and family functioning and pathway hope (r = 0.34; P = .01).
Percentage of Resolved Versus Unresolved on Reaction to Diagnosis The results of the RDIs indicated that 56% (n = 28) of parents were resolved and 44% (n = 22) were unresolved with their child’s diagnosis. Time since diagnosis (χ21,49 = 1.91, P = .24), number of hospitalizations (t = −0.68; P = .49), and child age (t = .86; P = .39) did not distinguish resolved versus unresolved parents. Unresolved parents did report greater perceived severity that approached significance (t = −01.98; P = .05); thus, severity was used as a covariate in subsequent analyses. Interviews with
resolved mothers were characterized by coming to terms with the diagnosis despite the shock and sadness that accompanied learning that their child had cancer. For example, when one resolved mother from the current study talked about her son and his diagnosis, she reflected on the realization that something was wrong, stating, “We thought he just sprained his ankle but after a couple of weeks we realized it was maybe something else. When the word ‘cancer’ was brought up I was shocked and overwhelmed but these are the cards we have been dealt.” She continued after being asked about specifics of hearing the final diagnosis: “We came in [to the clinic] thinking we were going to do additional blood work and then they told us the diagnosis and it was a whirlwind. We were being admitted, not just here for a visit, we were not going home. I was shocked and sad, you just can’t believe it.” She indicated that her feelings have changed for the better: “It is what it is. Our life is different than others but it is just something that we do. I try not to focus on why, we don’t really know why. I do believe that what he is going through will make him a stronger person. I believe it will benefit him in the future. He is the strongest person I know and he is only 4 [years old].” Unresolved interviews were characterized by recognition that feelings and thoughts about the diagnosis have not changed and that the parents continue to be preoccupied with the reasons why their child has cancer. For example, one unresolved mother explained, “I still have waves of sadness. It will hit me at times and I still feel horror over it. I am also angry over the diagnosis and ask ‘why’ all the time. The anger at the diagnosis does come up for me. I mean, we are in the day to day of it and dealing with side effects. I wonder why all the time. Like, I wonder what happened to his genetic makeup to cause this.”
Resolution Status and Hope, Family Functioning, and FCC Analyses of covariance were run to determine whether parent report of family functioning, hope, and FCC distinguished resolution status. A significant effect was found for agency hope (F = 4.53; P = .03) and for pathway hope (F = 5.04; P = .03). Specifically, unresolved parents reported significantly less agency hope (ie, belief that a goal can be achieved) and pathway hope (ie, belief that a route for achieving goals can be obtained) compared with resolved mothers. No significant findings emerged for family functioning. A significant effect was found for general information (F = 7.05, P = .01) on the MPOC-20, with unresolved parents reporting greater perceptions of receiving general information compared with resolved parents. See Table 2 for means and standard deviations.
Downloaded from jpo.sagepub.com at HOWARD UNIV UNDERGRAD LIBRARY on March 5, 2015
5
Popp et al. Table 2. Means and Standard Deviations of Parental SelfReported Measures by Resolution Status.
Agency hope Pathway hope General family functioning FCC—partnering FCC—general information FCC—specific information FCC—coordinated care FCC—respect
Resolved (n = 28)
Unresolved (n = 22)
P
13.14 (1.26) 13.35 (1.68) 3.33 (0.52) 6.26 (0.97) 5.09 (1.35) 5.82 (1.19) 6.12 (0.91) 6.30 (0.93)
12.14 (1.95) 12.50 (1.67) 3.02 (0.60) 6.33 (0.54) 5.91 (0.65) 6.16 (0.90) 6.30 (0.63) 6.50 (0.56)
.03 .03 .07 .80 .01 .19 .33 .35
Discussion The main goal of this study was to understand parents’ state of mind regarding resolution of the difficult feelings associated with having a child diagnosed with cancer. Second, we sought to investigate whether hopefulness, family functioning, and perceptions of care distinguish parents who have worked through those difficult feelings compared with those who are stuck in feelings of grief and preoccupation with the diagnosis. We found that 44% of parents were unresolved regarding their child’s diagnosis, regardless of time since diagnosis, number of hospitalizations, and age of their child. This is consistent with previous research that found comparable percentages with physical (Barnett et al., 2006; Marvin & Pianta, 1996; Popp, Robinson, Britner, & Blank, 2014) and psychiatric populations (Kearney, Britner, Farrell, & Robinson, 2011). Unresolved reactions in the current sample were evident when parents described thoughts and feelings that interfered with parent-child interactions (eg, “I couldn’t even look at her or be around her after the diagnosis”), emotional disengagement from the experience (eg, “I didn’t feel anything about the diagnosis”), and the continued search for understanding why this had happened to them (eg, “I wonder was it something I did while pregnant, was it something I gave to her, I wonder why all the time”). Our results related to hopefulness also suggest that resolution may be a resilience factor for coping with a child’s illness, similar to resilience factors in the stress and coping framework (Wallandar & Varni, 1998). In the current study, unresolved parents reported lower agency and pathway hopefulness compared with resolved parents. This finding is inconsistent with that of Lord et al. (2008), who found no differences between resolution status and personal hopefulness. These contradictory findings could be due in part to the measures used or illness characteristics (eg, phenylketonuria (PKU) vs pediatric cancer). In the present study, hopefulness was measured within a goal-setting framework, which may tap into the processes
of resolution more closely. Specifically, both agency and pathway hope suggest that parents have the determination to meet goals along with a sense of being able to create a plan to meet those goals. Similarly, resolved parents describe their experience in a positive sense and believe that they can manage challenges in their future (Marvin & Pianta, 1996). Previous research has demonstrated that unresolved parents report increased distress, characteristics common to parents who report lower hopefulness (Lewis & Kliewer, 1996; Mednick et al., 2007). Finally, there is evidence that hope buffers the relationship between stress and parental adjustment (Horton & Wallander, 2001); future researchers may want to consider whether resolution moderates this relationship as well. We also hypothesized that resolved parents would have greater perceptions of FCC. Only one of the subscales was significant, and it was contrary to our hypothesis: Unresolved parents had greater perceptions of receiving general information from health care providers. Examples of questions on the General Information subscale include whether staff gave the entire family information (eg, verbal, written), whether services were offered within the organization/community, and whether families received information about how to contact other parents for support. Other studies incorporating the MPOC-20 have reported low means on this subscale (eg, Dickens, Matthews, & Thompson, 2010; Jeglinsky, AuttiRamo, & Brogren Carlberg, 2011). One explanation for this finding in the current study is that unresolved parents may be soliciting information from health care providers, which is consistent with the persistent distress and preoccupied nature of some unresolved parents (Marvin & Pianta, 1996), leading to a decreased ability to integrate information.It may also be that health care providers are recognizing unresolved characteristics and the increased needs of these parents and are providing more education and information regarding care in an effort to increase coping and well-being. While this is likely an informal assessment made by the health care team (nurses, doctors, etc), there is recognition in the pediatric literature that formal, systematic screening can facilitate support services based on family needs (Kazak et al., 2011). Several strengths and limitations of this study will help guide future research. Strengths of this study include the use of interviews rather than reliance on self-report questionnaires of adaptation to illness. This allowed for a comprehensive understanding of the parent experience and provided context to parental concerns (Creswell, Klassen, Plano Clark, & Smith, 2011). Additionally, we used a measure of family centeredness that had been previously assessed for reliability and validity in a pediatric oncology sample (Klassen et al., 2008). Commentaries on FCC indicate that using established measures has the potential to advance knowledge in this area (Kuo et al., 2012).
Downloaded from jpo.sagepub.com at HOWARD UNIV UNDERGRAD LIBRARY on March 5, 2015
6
Journal of Pediatric Oncology Nursing
One limitation of this study is the lack of report from medical providers about their family-centered behaviors (eg, including the family in decisions, giving information about community support programs) or using observations of patient-provider encounters to evaluate familycenteredness. In addition, only 4 fathers completed RDI in this study as the primary parent who brought the child to the clinic. Future studies should incorporate a separate larger sample of fathers to understand the emotional impact of the diagnosis on them. Finally, it is likely that resolution is an ongoing process that may be dependent on the child’s treatment course; therefore, future studies should incorporate multiple assessments of resolution to capture this process overtime. Several implications for nursing practice emerged from this study. First, the narratives from parents inform nurses about the emotional experience of families whose child is diagnosed with cancer—in particular, the impact of the illness on the family since diagnosis. This study also highlights the practice of FCC and how this care is perceived by parents who are unresolved versus resolved. By recognizing the characteristic behaviors of resolution, nurses may be better equipped to approach and evaluate a family’s needs, including coping, adaptation, and barriers and response to learning. This can lead nurses to develop and provide families with more individualized care, education, and support. It may also help nurses discriminate between educational and emotional needs and thus provide more appropriate and timely care and referral. Further, this study found that unresolved parents report less hopefulness. It can be postulated that if health care providers do in fact have an influence on levels of hope in families (Hinds, Martin, & Vogel, 1987; Kylmä & Juvakka, 2007; Salmon et al., 2012) and hope has a role in the process of adaptation, then determining ways of providing care that engenders hopefulness in families may help move unresolved families toward resolution. Acknowledgments We gratefully acknowledge Renee C. B. Manworren, PhD, APRN, BC, PCNS-BC, FAAN, and Jacqueline M. McGrath, PhD, RN, FNAP, FAAN, for their support and guidance throughout this project and to all the families who agreed to participate.
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.
References Barnett, D., Clements, M., Kaplan-Estrin, M., McCaskill, J. W., Hunt, K. H., Butler, C. M., . . . Janisse, H. C. (2006). Maternal resolution of child diagnosis: Stability and relations with child attachment across the toddler to preschooler transition. Journal of Family Psychology, 20, 100-107. Bowes, S., Lowes, L., Warner, J., & Gregory, J. W. (2009). Chronic sorrow in parents of children with type 1 diabetes. Journal of Advanced Nursing, 65, 992-1000. Blacher, J. (1984). Sequential stages of parental adjustment to the birth of a child with handicaps: Fact or artifact? American Journal of Mental Deficiency, 89, 653-656. Buford, T. A. (2005). School-age children with asthma and their parents: Relationships with health care providers. Issues in Comprehensive Pediatric Nursing, 28, 153-162. Charon, R. (2004). Narrative and medicine. New England Journal of Medicine, 350, 862-864. Clubb, R. L. (1991). Chronic sorrow: Adaptation patterns of parents with chronically ill children. Pediatric Nursing, 17, 462-466. Creswell, J. W., Klassen, A. C., Plano Clark, V. L., & Clegg Smith, K. (2011). Best practices for mixed methods research in the health sciences. Retrieved from Office of Behavioral and Social Sciences Research (OBSSR) website: http://obssr.od.nih.gov/mixed_methods_research/pdf/ Best_Practices_for_Mixed_Methods_Research.pdf Dickens, K., Matthews, L. R., & Thompson, J. (2010). Parent and service providers’ perceptions regarding the delivery of family-centred paedriatric rehabilitation services in a children’s hospital. Child: Care, Health and Development, 37, 64-73. Epstein, N. B., Baldwin, L. M., & Bishop, D. S. (1983). The McMaster Family Assessment Device. Journal of Marital and Family Therapy, 9, 171-190. Faso, D. J., Neal-Beevers, A. R., & Carlson, C. L. (2013). Vicarious futurity, hope, and well-being in parents of children with autism spectrum disorder. Research in Autism Spectrum Disorders, 7, 288-297. Folkman, S. (2010). Stress, coping, and hope. Psycho-Oncology, 19, 901-908. Groopman, J. The anatomy of hope. New York: Random House; 2004. Herzer, M., Godiwala, N., Hommel, K. A., Driscoll, K., Mitchell, M., Crobsy, L. E., . . . Modi, A. C. (2010). Family functioning in the context of pediatric chronic conditions. Journal of Developmental and Behavioral Pediatrics, 31, 26-34. Hinds, P., Martin, J., & Vogel, R. J. (1987). Nursing strategies to influence adolescent hopefulness during oncologic illness. Journal of the Association of Paediatric Oncology Nurses, 4, 14-22. Horton, T. V., & Wallander, J. L. (2001). Hope and social support as resilience factors against psychological distress of mothers who care for children with chronic physical conditions. Rehabilitation Psychology, 46, 382-399. Howlader, N., Noone, A. M., Krapcho, M., Garshell, J., Miller, D., Altekruse, S. F., . . . Cronin, K. A. (Eds.). (2014). SEER cancer statistics review, 1975-2011. Retrieved from National Cancer Institute website: http://seer.cancer.gov/ csr/1975_2011/
Downloaded from jpo.sagepub.com at HOWARD UNIV UNDERGRAD LIBRARY on March 5, 2015
7
Popp et al. Hyden, L. C. (1997). Illness and narrative. Sociology of Healthy and Illness, 19, 48-64. Institute for Patient- and Family-Centered Care. (2008). Partnering with patients and families to design a patient-and family-centered health care system. Retrieved from http:// www.ipfcc.org/pdf/PartneringwithPatientsandFamilies.pdf Jeglinsky, I., Autti-Ramo, I., & Brogren Carlberg, E. (2011). Two sides of the mirror: Parents’ and service providers’ view on the family-centredness of care for children with cerebral palsy. Child: Care, Health, and Development, 38, 79-86. Kazak, A. E., Barakat, L. P., Hwang, W., Ditaranto, S., Biros, D., Beele, D., . . . Reilly, A. (2011). Association of psychological risk screening in pediatric cancer with psychosocial services provided. Psycho-Oncology, 20, 715-723. Kearny, J., Britner, P., Farrell, A., & Robinson, J. (2011). Mothers’ resolution of their young child’s psychiatric diagnosis: Associations with child, parent, and relationship characteristics. Child Psychiatry and Human Development, 42, 334-348. King, S., King, G., & Rosenbaum, P. (2004). Evaluating health service delivery to children with chronic conditions and their families: Development of a refined measure of processes of care (MPOC-20). Children’s Health Care, 33, 35-37. King, G., King, S., Rosenbaum, P., & Goffin, R. (1999). Familycentered caregiving and well- being of parents of children with disabilities: Linking process with outcome. Journal of Pediatric Psychology, 24, 41-53. Klassen, A. F., Dix, D. D., Cano, S. J., Papsdorf, M. M., Sung, L. L., & Klaassen, R. J. (2009). Evaluating family-centred service in paediatric oncology with the measure of processes of care (MPOC-20). Child: Care, Health and Development, 35(1), 16-22. Kuhlthau, K. A., Bloom, S., Van Cleave, J., Knapp, A. A., Romm, D., Klatka, K., . . . Perrin, J. M. (2011). Evidence for family-centered care for children with special health care needs: A systematic review. Academic Pediatrics, 11, 136-143. Kuo, D. Z., Houtrow, A. J., Arango, P., Kuhlthau, K. A., Simmons, J. M., & Neff, J. M. (2012). Family-centered care: Current applications and future directions in pediatric health care. Journal of Maternal Child Health, 16, 297-305. Kylmä, J., & Juvakka, T. (2007). Hope in parents of adolescents with cancer—Factors endangering and engendering parental hope. European Journal of Oncology Nursing, 11(3), 262-271. Lewis, H. A., & Kliewer, W. (1996). Hope, coping and adjustment among children with sickle cell disease: Tests of mediator and moderator models. Journal of Pediatric Psychology, 21, 25-41. Long, K. A., & Marsland, A. L. (2011). Family adjustment to childhood cancer: A systematic review. Clinical Child and Family Psychology Review, 14, 57-88. Lord, B., Ungerer, J., & Wastell, C. (2008). Implications of resolving the diagnosis of PKU for parents and children. Journal of Pediatric Psychology, 33, 855-866. Maikranz, J. M., Steele, R. G., Dreyer, M. L., Stratman, A. C., & Bovaird, J. A. (2007). The relationship of hope and illness-related uncertainty to emotional adjustment and
adherence among pediatric renal and liver transplant recipients. Journal of Pediatric Psychology, 32(5), 571-581. Marvin, R. S., & Pianta, R. C. (1996). Mothers’ reactions to their child’s diagnosis: Relations with security of attachment. Journal of Clinical Child Psychology, 25, 436-445. Miller, I. W., Kabacoff, R. I., Epstein, N. B., Bishop, D. S., Keitner, G. I., Baldwin, L. M., & van der Spuy, H. I. (1994). The development of a clinical rating scale for the McMaster model of family functioning. Family Process, 33, 53-69. Mednick, L., Cogen, F., Henderson, C., Rohrbeck, C. A., Kitessa, D., & Streisand, R. (2007). Hope more, worry less: Hope as a potential resilience factor in mothers of very young children with type 1 diabetes. Children’s Healthcare, 26, 385-396. Pai, A. L. H., Greenley, R. N., Lewandowski, A., Drotar, D., Youngstrom, E., & Peterson, C. C. (2007). A meta-analytic review of the influence of pediatric cancer on parent and family functioning. Journal of Family Psychology, 21, 407-415. Pianta, R. C., & Marvin, R. S. (1993). Manual for classification of the reaction to diagnosis interview. Unpublished manuscript, University of Virginia. Pianta, R. C., Marvin, R. S., Britner, P. A., & Borowitz, K. C. (1996). Mothers’ resolution of their children’s diagnosis: Organized patterns of caregiving representations. Special issue: The caregiving system. Infant Mental Health Journal, 17, 239-256. Popp, J. M., Robinson, J. L., Britner, P.A., & Blank, T.O. (2014). Parent adaptation and family functioning in relation to narratives of children with chronic illness. Journal of Pediatric Nursing, 29, 58-64. Rentinck, I., Ketelaar, M., Jongmans, M., Lindeman, E., & Gorter, J. (2009). Parental reactions following the diagnosis of cerebral palsy in their young child. Journal of Pediatric Psychology, 34(6), 671-676. Salmon, P., Hill, J., Ward, J., Gravenhorst, K, Eden, T., & Young, B. (2012). Faith and protection: The construction of hope by parents of children with leukemia and their oncologists. The Oncologist, 17, 398-404. Sheeran, T., Marvin, R. S., & Pianta, R. C. (1997). Mothers’ resolution of their child’s diagnosis and self-reported measures of parenting stress, marital relations, and social support. Journal of Pediatric Psychology, 22, 197-212. Snyder, C. R. (1995). Conceptualizing, measuring, and nurturing hope. Journal of Counseling & Development, 73(3), 355-360. Snyder, C. R., Harris, C., Anderson, J. R., Holleran, S. A., Irving, L. M., Sigmon, S. T., . . . Harney, P. (1991). The will and the ways: Development and validation of an individual-differences measure of hope. Journal of Personality and Social Psychology, 60, 570-585. Steele, R. G., Long, A., Reddy, K. A., Luhr, M., & Phipps, S. (2003). Changes in maternal distress and child-rearing strategies across treatment for pediatric cancer. Journal of Pediatric Psychology, 28, 447-452. Venning, A. J., Eliott, J., Whitford, H., & Honnor, J. (2007). The impact of a child’s chronic illness on hopeful thinking in children and parents. Journal of Social and Clinical Psychology, 26, 708-727.
Downloaded from jpo.sagepub.com at HOWARD UNIV UNDERGRAD LIBRARY on March 5, 2015
8
Journal of Pediatric Oncology Nursing
Wallander, J. L., & Varni, J. W. (1998). Effects of pediatric chronic physical disorders on child and family adjustment. Journal of Child Psychology and Psychiatry, 39, 29-46. Wennick, A., & Hallstrom, I. (2006). Swedish families’ lived experience when a child is first diagnosed as having insulin-dependent diabetes mellitus: An ongoing learning process. Journal of Family Nursing, 12, 368-389. Zimmerman, B. J., Bonner, S., Evans, D., & Mellins, R. B. (1999). Self-regulating childhood asthma: A developmental model of family change. Health Education & Behavior, 26, 55-71.
Author Biographies Jill M. Popp, PhD, is a Research Scientist at Connecticut Children’s Medical Center, Hartford, and Assistant Professor in
the Department of Pediatrics at the University of Connecticut School of Medicine. The focus of her research program is on parents’ reaction to their child’s diagnosis and how this influences individual and family functioning. Mary Conway, MSN, RN, CPHON, is a Pediatric Clinical Nurse Specialist in the Center for Cancer and Blood Disorders at Connecticut Children’s Medical Center in Hartford. Her research interests are in pediatric oncology and family-centered coping, care, and education. Ashley Pantaleao, BA, is a Research Assistant in the Department of Pain and Palliative Care at Connecticut Children’s Medical Center, Hartford. Her research interests include the effects of chronic illness on parent-child relationship quality.
Downloaded from jpo.sagepub.com at HOWARD UNIV UNDERGRAD LIBRARY on March 5, 2015
