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When a child's cancer progresses beyond current treatment capability, the parents are likely to participate in noncurative treatment decision making. One factor that helps parents to make these decisions and remain satisfied with them afterward is deciding as they believe a good parent would decide. Because being a good parent to a child with incurable cancer has not been formally defined, we conducted a descriptive study to develop such a definition.
In face-to-face interviews, 62 parents who had made one of three decisions (enrollment on a phase I study, do not resuscitate status, or terminal care) for 58 patients responded to two open-ended questions about the definition of a good parent and about how clinicians could help them fulfill this role. For semantic content analysis of the interviews, a rater panel trained in this method independently coded all responses. Inter-rater reliability was excellent.
Among the aspects of the definition qualitatively identified were making informed, unselfish decisions in the child's best interest, remaining at the child's side, showing the child that he is cherished, teaching the child to make good decisions, advocating for the child with the staff, and promoting the child's health. We also identified 15 clinician strategies that help parents be a part of making these decisions on behalf of a child with advanced cancer.
The definition and the strategies may be used to guide clinicians in helping parents fulfill the good parent role and take comfort afterward in having acted as a good parent.
Parents of children who are expected to die of cancer often describe themselves as trying to be a good parent in making care decisions in the child's best interest.1 Parents' perceived success in this effort is influenced by their interactions with the child's clinicians. The support of trusted clinicians in decision making conveys that the parents are viewed as good parents.1–3 Clinicians' reactions to parental decisions (respect for the decision v doubt) can enhance or diminish parents' sense of competence at a time when there are few remaining opportunities to be a good parent. Clinicians' reactions also influence parents' level of trust at a time when trust is essential to meet the child's and family's needs.4–6 In addition, parents of children who have died of cancer report that their sense of having been a good parent at the end of their child's life helps them to emotionally survive the experience and the child's loss.2 In our previous research, 84% of participating parents of children with incurable cancer identified a factor influencing their decision making to be “deciding as a good parent would.”1 We recognized that we did not know the meaning of this commonly considered factor for parents.
An understanding of the meaning of being a good parent to a child dying of cancer may help guide clinical care, optimize support for difficult treatment or care decisions, and allow parents the comfort of having made a good parent's decision. We conducted interviews with parents who participated in making one of three decisions for a child with cancer to elicit their definitions of being a good parent. We also asked what clinician behaviors would be helpful to parents in fulfilling the good parent role at this time in their child's care.
This descriptive study took place at St Jude Children's Research Hospital and was approved by the institutional review board. Eligible parents were English speaking, and had made a noncurative treatment decision during the previous 72 hours for their ill child. We approached only parents identified by clinicians as having made one of three decisions, able to provide informed consent, and unlikely to be emotionally burdened by an invitation to participate. The three decisions were whether to enroll in a phase I study, to initiate a do not resuscitate (DNR) order, and whether to initiate terminal care (ie, to end all disease-directed therapy while continuing aggressive symptom management). Each parent could participate in the study only once.
Eligible parents were identified through our attendance at clinical rounds, daily review of physician documentation in the intensive care and bone marrow transplant units, electronic notification of each enrollment on a phase I trial, and by clinician referral. When a potentially eligible parent was identified, a study team member confirmed the parent's eligibility with both the child's physician and psychosocial specialist. After signed informed consent was obtained, the parent selected the interview location.
Using our standard decision making study interview format,1–3 we first asked parents to describe the decision they had made. As described in our explanation of the study to parents and in the consent documents, we then read the following statements to the parents: In our previous studies with parents and guardians who have made a difficult decision, such as the one you recently made on behalf of your child, we learned that the parents/guardians made their decision to benefit their child in some way. These parents/guardians described their decision making as “doing what a good parent would do” or “deciding as a good parent would.” It is important to staff to do all that they can to support your definition of what a good parent is or what a good parent would do. (1) Please share with me your definition of being a good parent for your child at this point in your child's life. (2) Please describe for me the actions from staff that would help you in your efforts to be a good parent to your child now.
The interviewer wrote down the parent's responses, read them back to the parent for verification, immediately typed them, and returned the typed interview to the parent(s) for review. The three interviewers were retrained in obtaining consent and interview technique every 3 months throughout the 22-month study period.
After accuracy was confirmed by parents, the transcribed responses were analyzed for semantic content to identify the parents' intended meaning.7–11 Two study team members jointly reviewed the first four interviews and applied codes to each phrase to capture its meaning. Three team members (one palliative care physician and two nurse researchers) then completed study-specific training in semantic content analysis using the four interviews and independently analyzed the remaining interviews. The specific steps in this analysis were as follows. (1) Each phrase was labeled with a code derived from the exact and recurring verbiage used by the parents and that represented the parents' intended meaning and thus the codes' meaning. (2) Each individual coded phrase was repeatedly compared with the actual parent interview quotes and with all other coded phrases to make sure the parents' intended meaning was accurately captured in the label and to assess for overlapping or expanded meaning among the recurring codes. (3) A conceptual definition was developed for each code based on the parents' verbiage and the assessed parents' meaning. (4) Inter-rater reliability estimates (percent agreement) were computed for each code. (5) Codes with overlapping meaning and that recurred together frequently were combined to reduce the number of unique codes; as a result of the combining, a reworking of the code definitions was completed to include all aspects of the combined codes (now labeled themes) and the definitions of the themes. (6) All elements of each theme were compared and extracted to form the overall conceptual definition of being a good parent.
Sixty-two parents (including four couples) of 58 patients participated. Most parents were mothers (91.4%) and white (44.8%); their ages were 19.7 to 55.2 years. Only the interview responses from the parents who identified themselves as the primary caregiver are included in this analysis to avoid the possibility of duplicative responses from couples that could inflate frequency rates of findings. The most frequent decisions were about phase I study enrollment (51.7%) and DNR status (29.3%). Each parent responded to both interview questions; there were no missing data. Most of the 58 patients were white (65.5%) and male (56.9%); their ages were 6 months to 21.6 years. Solid tumors were the most common diagnoses (n = 30; 51.78%; Table 1). All but two patients are now deceased. Death occurred 3 to 103 days (median, 10 days) after a DNR decision; 3 to 685 days (median, 46 days) after a terminal care decision; and 39 to 1,508 days (median, 138 days) after a phase I decision.
Each parent was interviewed once; the mean interview time was 31 minutes (median, 23 minutes). Most interviews (n = 63) occurred in clinical or domiciliary settings; one parent requested a telephone interview. Two couples requested that they be interviewed simultaneously; all other parents were interviewed singly. Three parents made minor corrections to the interview transcripts, 57 approved them without change, and two elaborated on them. Mean inter-rater reliability (% agreement) for each code was 92.6% (median, 75%; range, 50% to 100%) for the first question and 92.0% (median, 75%; range, 50% to 100%) for the second.
Interview question 1: Please share with me your definition of being a good parent for your child at this point in your child's life. Eight themes identified among the 220 meaning codes assigned to parent responses (Table 2) formed the basis of our definition of being a good parent. The most frequent theme (in 89.1% of interviews) was “doing right by my child,” conveying parents' desire to make decisions in the child's best interest and meet the child's basic needs to the extent possible, in an unselfish manner. The next two most frequent themes, identified in 48.4% and 42.2% of interviews, respectively, were “being there for my child” and “conveying love to my child.” Parents felt that it was important to be continually supportive, to remain at the side of their child, and to convey their love to the child. Additional themes in descending frequency included “being a good life example,” “being an advocate for my child,” “letting the Lord lead,” “not allowing suffering,” and “making my child healthy.” The qualitatively derived definition of being a good parent to a child with incurable cancer is: The good parent makes informed, unselfish decisions in the child's best interest; provides the basics of food, shelter, and clothing; remains at the child's side regardless of the circumstances; shows the child that he or she is cherished; tries to prevent suffering and protect health; teaches the child to make good choices, to respect and have sympathy for others, and to know God; advocates for the child with staff; and promotes the child's health.
Although not all eight themes were represented in every parent's responses, all themes were represented across each of the three types of decisions.
Interview Question 2: Please describe for me the actions from staff that would help you in your efforts to be a good parent to your child now. From a total of 210 codes assigned to the parent responses, 15 themes were identified (Table 3). The most frequent theme (“all that can be done is being done”) represented the foremost importance of knowing that the child and family were receiving the best possible clinical care. Of the remaining themes, five (“staff respect me and my decisions,” “staff know our special needs,” “staff like our child,” “staff tell us we are good parents,” and “staff give us time to decide”) represented supportive, positive clinician behaviors consistently experienced by parents. Nine themes (“continue to comfort my child and me,” “be pleasant,” “coordinate care,” “ask about our faith,” “give us the facts,” “don't quit on us,” “don't forget us,” “keep including my child,” and “provide more material items and support options”) represented clinician behaviors that parents desired to see increased or initiated.
To the best of our knowledge, this is the first study to explicate the meaning of being a good parent to a child with incurable cancer. The definition reflects parents' perceived obligation to make beneficial medical decisions for their child and remain at the child's side despite difficult circumstances. Certain components of this semantically derived definition confirm the findings of others. Making well-informed, unselfish decisions, having the courage to pursue favorable outcomes for the child, and facing difficult treatment decisions were the leading values of parents of neonates with life-limiting congenital abnormalities.12 Parents' desire to uphold their responsibilities toward their critically ill or dying child13–16 was reflected in our themes of “being there for my child” and “being an advocate for my child.” In addition, using a phenomenological method to describe the transition experience of 28 bereaved parents through the death of their child, Woodgate17 labeled aspects of that experience as being a good parent. These aspects included preventing suffering and ensuring happiness for their child, being physically present, and providing emotional support to their child. These aspects are reflected in our themes of “being there for my child,“ “conveying love to my child,” “being an advocate for my child” and “not allowing suffering.” The emergence of similar parental meaning across different infant, child, and adolescent age patients and through different research methods further supports the existence of the concept of being a good parent to a seriously ill child.
Our themes of ”making my child healthy,“ “being a good life example,” and “letting the Lord lead” were not identified in previous studies. The differences between our findings and those of Rushton12 and Woodgate17 may reflect medical circumstances or the status of the ill child (deceased v living). Parents of a child with cancer typically pursue potentially curative treatment until cure is no longer a medical possibility, whereas curative options were unavailable for the neonates12 or the children who died of sudden infant death.17
Although every theme identified in our parent interviews was reflected in all three decision types, not every parent interview contained all of the identified themes. This may be related to differing parental perceptions of what it means to be a good parent and to different clinical contexts, including parents' perceptions of care goals and of the seriousness of their child's clinical situation. In one recent study, spouses reported perceiving the primary treatment goal for their child differently (palliative care v curative therapy).18 In another study, most of the parents of 24 children who had died of cancer perceived the goal of palliative care as comfort, but several desired broader goals (eg, activities to engage their child in daily life).16 Clinicians mindful of possible differences in parental perceptions may help parents increase their understanding of their child's clinical status and achieve their definition of being a good parent by providing opportunities to discuss care goals. Parents' intellectual and emotional awareness of their child's incurable disease appears to be influenced by the type and amount of information provided to them by their child's clinicians.19,20
Clinician strategies that help parents fulfill their definition of a good parent appear to fall into three categories: strategies that parents currently benefit from and want to see continued (“staff like our child”), those that the parents want increased (“ask about our faith,” “give us the facts”), and those the parents want initiated (“don't forget us”). Clinicians may directly query parents about the clinician behaviors they would like to see continued, increased, or initiated. The theme “staff like our child” reflects the importance of positive relationships in end-of-life care1,21 and the comfort parents derive from clinicians' positive regard for their child; this regard is effectively conveyed when clinicians show emotion about the child's clinical situation.22 The theme “give us the facts” represents parents' desire for accurate, clear, understandable information about their child's condition. Others have reported that parents of children dying of cancer want clear, understandable, concise, complete, accurate, and compassionately delivered information2,16,22,23; this strategy is included in the end-of-life care recommendations of professional associations24–26 and in evidence-based guidelines from a multisite study.3 Our findings also indicate that parents benefit from their child's clinicians telling them that they are good parents.
A faith-related theme in the good-parent definition (“let the Lord lead”) and among the helpful clinician strategies (“ask about our faith”) highlights parents' perceived responsibility to guide their child spiritually and their reliance on personal faith. The theme “ask about our faith” conveys parents' desire that clinicians know about and respect their religious beliefs and practices. Among parents whose child died in a pediatric intensive care unit, 73% identified faith-based sources of comfort at the end of their child's life.5 Four religious themes were identified: prayer, faith, access to clergy, and belief that the parent-child relationship endures beyond death. Other studies of parents and clinicians of children dying in intensive care15,27–30 and hospice settings31,32 also demonstrated the importance of spiritual beliefs. Because faith is important to some parents at this point in their child's care, clinicians can support parents' faith-related practices by asking about parents' beliefs, religious symbols, or practices and asking how clinicians can best show their respect. The American Academy of Pediatrics position article on palliative care acknowledges the essential inclusion of spirituality, including access to spiritual advisors.33
Clinician behaviors reported by parents to help them make the studied decisions have striking similarities to those identified in other studies. The theme we identified as “not allowing suffering” is comparable to that of avoiding negative outcomes for the ill child.1,15 Additional similarities include staff emotional supportiveness and comforting of parents,22,34 keeping parents well-informed about their child's status,22 including the child in discussions and decisions to the extent possible,24–26 continuing to convey hope and have a positive demeanor,13 allowing parents time to make end-of-life decisions,15 and being direct and forthcoming with information even if it is distressing.22,34 These similarities indicate that certain clinician behaviors help parents make end-of-life decisions and fulfill the good parent role in general.
Four supportive clinician behaviors identified in this study were not associated with end-of-life decision making but were identified as helping parents feel that they were “good parents”: “staff tell us we are good parents,” “don't forget us,” “provide more material items and support options,” and “coordinate care.” These four behaviors appear related to parents' desire to maintain a personal association with the child's clinicians. The remarkable nature of this relationship is a comfort to parents. In sum, although behaviors that help parents make end-of-life decisions and fulfill their definition of a good parent have similarities, some helpful clinician behaviors are unique to the latter effort. Clinicians will benefit from knowing which behaviors are most helpful to parents in both of these clinical situations.
Components of the definition of a good parent (contributing to the child's moral, physical, and emotional well being) meet social expectations of all parents. Our findings and others1,16 indicate that the parents of seriously ill children remain concerned about the child's development; clinicians need to anticipate these concerns. The absence of missing data for either interview question indicates that all participating parents, including several first-time parents, were able to articulate their personal definition of a good parent. It is possible that some parents may not be aware of this personal definition until asked about it by a clinician. Helping the parent to explore his or her definition of a good parent may offer parents and clinicians insight into parent choices and preferences for the child with progressed cancer.
Our study was limited by the predominance of mothers and of white male patients, and by being conducted at a single site. It is also possible that the wording used in our interview query (“…we learned that the parents made their decision to benefit their child in some way…”) may have influenced the parents' responses by framing the question. Our findings do not represent all parents involved in these three decisions for a child with incurable cancer, given that some parents were not approached for this study because of clinician concern that it would be too burdensome. Some aspects of the definition of being a good parent do not apply equally to all parents (eg, “to know God”) or to children of all ages (eg, “teaching the child to have sympathy for others”), as conveyed by the number of parents represented by each code or theme. Therefore, clinicians may find it more helpful to select from among themes rather than attempt to apply the entire definition in every clinical situation related to the three studied decisions. Finally, some aspects of care that may influence parents' definition of a good parent may differ with cancer versus other clinical conditions. The information provided here may help to guide clinicians' care of children with advanced cancer, optimize support for the studied decisions, and allow grieving parents the comfort of having been a good parent.
We thank Sharon L. Naron, Scientific Editor at St Jude Children's Research Hospital, for her insightful editing of this work.
Supported in part by Grant No. R21 NR008634 from the National Institute of Nursing Research, Cancer Center Support Grant No. P30 CA21765 from the National Cancer Institute, and the American Lebanese Syrian Associated Charities.
Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.
The author(s) indicated no potential conflicts of interest.
Conception and design: Pamela S. Hinds, Linda L. Oakes, Brent Powell, Deo Kumar Srivastava, Wayne L. Furman
Financial support: Pamela S. Hinds
Administrative support: Pamela S. Hinds
Provision of study materials or patients: Pamela S. Hinds, Linda L. Oakes, Judy Hicks, Brent Powell, JoAnn Harper, Wayne L. Furman
Collection and assembly of data: Pamela S. Hinds, Linda L. Oakes, Judy Hicks, Brent Powell, Sheri L. Spunt, JoAnn Harper, Justin N. Baker, Nancy K. West, Wayne L. Furman
Data analysis and interpretation: Pamela S. Hinds, Linda L. Oakes, Judy Hicks, Brent Powell, Deo Kumar Srivastava, Sheri L. Spunt, JoAnn Harper, Justin N. Baker, Nancy K. West, Wayne L. Furman
Manuscript writing: Pamela S. Hinds, Linda L. Oakes, Judy Hicks, Brent Powell, Deo Kumar Srivastava, Sheri L. Spunt, JoAnn Harper, Justin N. Baker, Nancy K. West, Wayne L. Furman
Final approval of manuscript: Pamela S. Hinds, Linda L. Oakes, Judy Hicks, Brent Powell, Deo Kumar Srivastava, Sheri L. Spunt, JoAnn Harper, Justin N. Baker, Nancy K. West, Wayne L. Furman