First name
Karen
Middle name
W
Last name
Carroll

Title

Problems and hopes perceived by mothers, fathers and physicians of children receiving palliative care.

Year of Publication

2015

Number of Pages

1052-65

Date Published

2015 Oct

ISSN Number

1369-7625

Abstract

<p><strong>BACKGROUND: </strong>The quality of shared decision making for children with serious illness may depend on whether parents and physicians share similar perceptions of problems and hopes for the child.</p>

<p><strong>OBJECTIVE: </strong>(i) Describe the problems and hopes reported by mothers, fathers and physicians of children receiving palliative care; (ii) examine the observed concordance between participants; (iii) examine parental perceived agreement; and (iv) examine whether parents who identified specific problems also specified corresponding hopes, or whether the problems were left 'hopeless'.</p>

<p><strong>METHOD: </strong>Seventy-one parents and 43 physicians were asked to report problems and hopes and perceived agreement for 50 children receiving palliative care. Problems and hopes were classified into eight domains. Observed concordance was calculated between parents and between each parent and the physicians.</p>

<p><strong>RESULTS: </strong>The most common problem domains were physical body (88%), quality of life (74%) and medical knowledge (48%). The most common hope domains were quality of life (88%), suffering (76%) and physical body (39%). Overall parental dyads demonstrated a high percentage of concordance (82%) regarding reported problem domains and a lower percentage of concordance on hopes (65%). Concordance between parents and physicians regarding specific children was lower on problem (65-66%) and hope domains (59-63%). Respondents who identified problems regarding a child's quality of life or suffering were likely to also report corresponding hopes in these domains (93 and 82%, respectively).</p>

<p><strong>CONCLUSION: </strong>Asking parents and physicians to talk about problems and hopes may provide a straightforward means to improve the quality of shared decision making for critically ill children.</p>

DOI

10.1111/hex.12078

Alternate Title

Health Expect

PMID

23683168

Title

Point prevalence study of pediatric inpatients who are unable to communicate effectively about pain.

Year of Publication

2014

Number of Pages

382-6

Date Published

2014 Nov

ISSN Number

2154-1663

Abstract

<p><strong>OBJECTIVE: </strong>Pediatric inpatients may be at risk for inadequate pain management if they are unable to communicate effectively because of age, physical or cognitive impairment, or medical procedures. We conducted a point prevalence study to estimate the proportion of inpatients at a children's hospital who have difficulty communicating to hospital staff.</p>

<p><strong>METHODS: </strong>We obtained nurse reports of ability to communicate for all inpatients aged ≥12 months in a pediatric hospital. Demographic information was obtained from the medical record.</p>

<p><strong>RESULTS: </strong>Questionnaires were completed for 254 inpatients. Forty percent of inpatients had some difficulty communicating, and 69% had experienced pain during the hospitalization. Patient ability to communicate was not related to experiencing pain (χ(2) test, P = .30) or effectiveness of pain management (χ(2) test, P = .80) but was associated with difficulty communicating about pain and nurses needing help from the caretaker to communicate with the patient (χ(2) tests, Ps &lt; .001).</p>

<p><strong>CONCLUSIONS: </strong>A substantial proportion of inpatients aged ≥12 months at a large children's hospital had difficulties communicating effectively and experienced pain during hospitalization. These communication difficulties were not associated with nurse reports of the effectiveness of pain management. However, patients who had difficulties communicating in general were also more likely to have difficulty communicating about pain specifically, and nurses were more likely to need help from the caregiver to understand these patients. Future directions include identifying which conditions, procedures, and medications are associated with inability to communicate.</p>

DOI

10.1542/hpeds.2014-0006

Alternate Title

Hosp Pediatr

PMID

25362081

Title

Psychological Well-Being and Family Environment of Siblings of Children with Life Threatening Illness.

Year of Publication

2015

Number of Pages

981-4

Date Published

2015 Nov

ISSN Number

1557-7740

Abstract

<p><strong>BACKGROUND: </strong>The psychological well-being of siblings of children with life threatening illness remains largely uncharted. Pediatric cancer research suggests that a supportive family environment may protect the psychological well-being of siblings.</p>

<p><strong>OBJECTIVE: </strong>We hypothesized that (1) siblings of pediatric palliative care patients would show clinical/behavioral scores that were elevated but that rates of serious psychopathology would be comparable to the general population of children their age; and (2) higher family functioning scores would be associated with lower clinical scores and higher adaptive scores for these siblings.</p>

<p><strong>METHODS: </strong>We conducted an observational study with families in which a patient receiving palliative care had one or more siblings between the ages of 6 and 11. Parents completed the Behavioral Assessment System for Children, Second Edition (BASC-2) to assess the siblings' psychological well-being and the Family Assessment Device (FAD) to assess the family environment.</p>

<p><strong>RESULTS: </strong>Twenty-four parents reported data for 30 siblings. Only three siblings scored in the clinical range on a BASC-2 composite clinical scale, and 11 siblings scored in the at-risk range on one or more composite scales. Higher FAD scores predicted significantly higher externalization composite clinical scores (7.54, 95% CI: 1.12, 13.97, p &lt; 0.05) and significantly higher behavioral composite scores (7.88, 95% CI: 1.55, 14.21, p &lt; 0.05).</p>

<p><strong>DISCUSSION: </strong>Siblings of pediatric palliative care patients are not experiencing lower psychological well-being than the general population. The prediction that a positive family environment would be associated with higher levels of psychological health was supported.</p>

DOI

10.1089/jpm.2015.0150

Alternate Title

J Palliat Med

PMID

26393493

Title

Putting on a happy face: emotional expression in parents of children with serious illness.

Year of Publication

2013

Number of Pages

542-51

Date Published

2013 Mar

ISSN Number

1873-6513

Abstract

<p><strong>CONTEXT: </strong>Communication is widely acknowledged as a crucial component of high-quality pediatric medical care, which is provided in situations in which parents typically experience strong emotions.</p>

<p><strong>OBJECTIVES: </strong>To explore emotion using the Linguistic Inquiry and Word Count (LIWC) and a self-report questionnaire to better understand the relationship between these two measures of emotion in a pediatric care context.</p>

<p><strong>METHODS: </strong>Sixty-nine parents of 47 children who were participants in the Decision Making in Pediatric Palliative Care Study at The Children's Hospital of Philadelphia took part in this study. Parents completed the Positive and Negative Affect Schedule (PANAS) and a semistructured interview about their children and experience with medical decision making. The transcribed interviews were analyzed with the LIWC program, which yields scores for positive and negative emotional expression. The association between LIWC and PANAS scores was evaluated using multivariate linear regression to adjust for potential confounders.</p>

<p><strong>RESULTS: </strong>Parents who used more positive words when speaking about the illnesses of their children and the experience of medical decision making were more likely to report lower levels of positive affect on the PANAS: increase in the standard deviation of positive emotional expression was associated with an unadjusted 7.4% decrease in the self-reported positive affect (P&nbsp;= 0.015) and an adjusted 7.0% decrease in the self-reported positive affect (P&nbsp;= 0.057) after modeling for potential confounders. Increase in the standard deviation of negative emotional expression was associated with an adjusted 9.4% increase in the self-reported negative affect (P&nbsp;= 0.036).</p>

<p><strong>CONCLUSION: </strong>The inverse relationship between parents' positive emotional expression and their self-reported positive affect should remind both researchers and clinicians to be cognizant of the possibilities for emotional miscues, and consequent miscommunication, in the pediatric care setting.</p>

DOI

10.1016/j.jpainsymman.2012.03.007

Alternate Title

J Pain Symptom Manage

PMID

22926092

Title

Regoaling: a conceptual model of how parents of children with serious illness change medical care goals.

Year of Publication

2014

Number of Pages

9

Date Published

03/2014

ISSN Number

1472-684X

Abstract

<p><strong>BACKGROUND: </strong>Parents of seriously ill children participate in making difficult medical decisions for their child. In some cases, parents face situations where their initial goals, such as curing the condition, may have become exceedingly unlikely. While some parents continue to pursue these goals, others relinquish their initial goals and generate new goals such as maintaining the child's quality of life. We call this process of transitioning from one set of goals to another regoaling.</p>

<p><strong>DISCUSSION: </strong>Regoaling involves factors that either promote or inhibit the regoaling process, including disengagement from goals, reengagement in new goals, positive and negative affect, and hopeful thinking. We examine these factors in the context of parental decision making for a seriously ill child, presenting a dynamic conceptual model of regoaling. This model highlights four research questions that will be empirically tested in an ongoing longitudinal study of medical decision making among parents of children with serious illness. Additionally, we consider potential clinical implications of regoaling for the practice of pediatric palliative care.</p>

<p><strong>SUMMARY: </strong>The psychosocial model of regoaling by parents of children with a serious illness predicts that parents who experience both positive and negative affect and hopeful patterns of thought will be more likely to relinquish one set of goals and pursue a new set of goals. A greater understanding of how parents undergo this transition may enable clinicians to better support them through this difficult process.</p>

DOI

10.1186/1472-684X-13-9

Alternate Title

BMC Palliat Care

PMID

24625345

Title

Parental explicit heuristics in decision-making for children with life-threatening illnesses.

Year of Publication

2013

Number of Pages

e566-72

Date Published

2013 Feb

ISSN Number

1098-4275

Abstract

<p><strong>OBJECTIVE: </strong>To identify and illustrate common explicit heuristics (decision-making aids or shortcuts expressed verbally as terse rules of thumb, aphorisms, maxims, or mantras and intended to convey a compelling truth or guiding principle) used by parents of children with life-threatening illnesses when confronting and making medical decisions.</p>

<p><strong>METHODS: </strong>Prospective cross-sectional observational study of 69 parents of 46 children who participated in the Decision-making in Pediatric Palliative Care Study between 2006 and 2008 at the Children's Hospital of Philadelphia. Parents were guided individually through a semistructured in-depth interview about their experiences and thoughts regarding making medical decisions on behalf of their ill children, and the transcribed interviews were qualitatively analyzed.</p>

<p><strong>RESULTS: </strong>All parents in our study employed explicit heuristics in interviews about decision-making for their children, with the number of identified explicit heuristics used by an individual parent ranging from tens to hundreds. The heuristics served 5 general functions: (1) to depict or facilitate understanding of a complex situation; (2) to clarify, organize, and focus pertinent information and values; (3) to serve as a decision-making compass; (4) to communicate with others about a complex topic; and (5) to justify a choice.</p>

<p><strong>CONCLUSIONS: </strong>Explicit heuristics played an important role in decision-making and communication about decision-making in our population of parents. Recognizing explicit heuristics in parent interactions and understanding their content and functions can aid clinicians in their efforts to partner with parents in the decision-making process.</p>

DOI

10.1542/peds.2012-1957

Alternate Title

Pediatrics

PMID

23319524

Title

How parents of children receiving pediatric palliative care use religion, spirituality, or life philosophy in tough times.

Year of Publication

2011

Number of Pages

39-44

Date Published

2011 Jan

ISSN Number

1557-7740

Abstract

<p><strong>BACKGROUND: </strong>How parents of children with life threatening conditions draw upon religion, spirituality, or life philosophy is not empirically well described.</p>

<p><strong>METHODS: </strong>Participants were parents of children who had enrolled in a prospective cohort study on parental decision-making for children receiving pediatric palliative care. Sixty-four (88%) of the 73 parents interviewed were asked an open-ended question on how religion, spirituality, or life philosophy (RSLP) was helpful in difficult times. Responses were coded and thematically organized utilizing qualitative data analysis methods. Any discrepancies amongst coders regarding codes or themes were resolved through discussion that reached consensus.</p>

<p><strong>RESULTS: </strong>Most parents of children receiving palliative care felt that RSLP was important in helping them deal with tough times, and most parents reported either participation in formal religious communities, or a sense of personal spirituality. A minority of parents, however, did not wish to discuss the topic at all. For those who described their RSLP, their beliefs and practices were associated with qualities of their overall outlook on life, questions of goodness and human capacity, or that "everything happens for a reason." RSLP was also important in defining the child's value and beliefs about the child's afterlife. Prayer and reading the bible were important spiritual practices in this population, and parents felt that these practices influenced their perspectives on the medical circumstances and decision-making, and their locus of control. From religious participation and practices, parents felt they received support from both their spiritual communities and from God, peace and comfort, and moral guidance. Some parents, however, also reported questioning their faith, feelings of anger and blame towards God, and rejecting religious beliefs or communities.</p>

<p><strong>CONCLUSIONS: </strong>RSLP play a diverse and important role in the lives of most, but not all, parents whose children are receiving pediatric palliative care.</p>

DOI

10.1089/jpm.2010.0256

Alternate Title

J Palliat Med

PMID

21244252

Title

Parental hopeful patterns of thinking, emotions, and pediatric palliative care decision making: a prospective cohort study.

Year of Publication

2010

Number of Pages

831-9

Date Published

2010 Sep

ISSN Number

1538-3628

Abstract

<p><strong>OBJECTIVE: </strong>To test the hypothesis that hopeful patterns of thoughts and emotions of parents of pediatric patients receiving palliative care consultative services are related to subsequent decisions, specifically regarding limit of intervention (LOI) orders.</p>

<p><strong>DESIGN: </strong>Prospective cohort study.</p>

<p><strong>SETTING: </strong>Children's hospital and surrounding region.</p>

<p><strong>PARTICIPANTS: </strong>Thirty-three pediatric patients receiving palliative care consultative services who did not have LOI orders at time of cohort entry and their 43 parental adults.</p>

<p><strong>MAIN EXPOSURES: </strong>Parental levels at time of cohort entry of hopeful patterns of thinking and emotions, in conjunction with perceptions about patients' health trajectories.</p>

<p><strong>MAIN OUTCOME MEASURE: </strong>Enactment of an LOI order after entry into the cohort.</p>

<p><strong>RESULTS: </strong>During the 6 months of observation, 14 patients (42.4%) had an LOI order enacted. In adjusted analyses, higher levels of parental hopeful patterns of thinking were significantly associated with increased odds of enactment of an LOI order (adjusted odds ratio [AOR], 2.73; 95% confidence interval [CI], 1.04-7.22). Increased odds of LOI enactment were associated to nonsignificant degrees with lower levels of parental positive affect (AOR, 0.44; 95% CI, 0.17-1.12), higher levels of parental negative affect (AOR, 2.02; 95% CI, 0.98-4.16), and parental perceptions of worsening health over time (AOR, 1.72; 95% CI, 0.73-4.07).</p>

<p><strong>CONCLUSION: </strong>For pediatric patients receiving palliative care consultative services, higher levels of parents' hopeful patterns of thinking are associated with subsequent enactment of LOI orders, suggesting that emotional and cognitive processes have a combined effect on medical decision making.</p>

DOI

10.1001/archpediatrics.2010.146

Alternate Title

Arch Pediatr Adolesc Med

PMID

20819965

Title

Good-parent beliefs of parents of seriously ill children.

Year of Publication

2015

Number of Pages

39-47

Date Published

01/2015

ISSN Number

2168-6211

Abstract

IMPORTANCE: Parents' beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision support.

OBJECTIVE: To assess parents' perceptions regarding the relative importance of 12 good-parent attributes.

DESIGN, SETTING, AND PARTICIPANTS: A cross-sectional, discrete-choice experiment was conducted at a children's hospital. Participants included 200 parents of children with serious illness.

MAIN OUTCOMES AND MEASURES: Ratings of 12 good-parent attributes, with subsequent use of latent class analysis to identify groups of parents with similar ratings of attributes, and ascertainment of whether membership in a particular group was associated with demographic or clinical characteristics.

RESULTS: The highest-ranked good-parent attribute was making sure that my child feels loved, followed by focusing on my child's health, making informed medical care decisions, and advocating for my child with medical staff. We identified 4 groups of parents with similar patterns of good-parent-attribute ratings, which we labeled as: child feels loved (n=68), child's health (n=56), advocacy and informed (n=55), and spiritual well-being (n=21). Compared with the other groups, the child's health group reported more financial difficulties, was less educated, and had a higher proportion of children with new complex, chronic conditions.

CONCLUSIONS AND RELEVANCE: Parents endorse a broad range of beliefs that represent what they perceive they should do to be a good parent for their seriously ill child. Common patterns of how parents prioritize these attributes exist, suggesting future research to better understand the origins and development of good-parent beliefs among these parents. More important, engaging parents individually regarding what they perceive to be the core duties they must fulfill to be a good parent may enable more customized and effective decision support.

DOI

10.1001/jamapediatrics.2014.2341

Alternate Title

JAMA Pediatr

PMID

25419676

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