A Pilot Feasibility Study of a Group-delivered Cancer Parenting Program: Enhancing Connections-Group

Abstract

Objective:

The purpose of this study was to examine the feasibility and short-term impact of a 5-session fully manualized, group-delivered cancer parenting education program to diagnosed parents or surrogate parents with a school-age child.

Design:

Single group, pre-post-test design with intent to treat analysis.

Sample:

A total of 16 parents completed the program who were diagnosed within 12 months with non-metastatic cancer of any type (Stages 0-III), read and wrote English, had a child 5–17 years old who knew the parent’s diagnosis.

Methods:

Assessments occurred at baseline and at 2 months post-baseline on standardized measures of parental depressed mood, anxiety, parenting self-efficacy, parenting quality, parenting skills and child behavioral-emotional adjustment.

Findings/Results:

The program was feasible and well accepted: 16/18 (89%) of the enrolled participants were included in the intent to treat analysis. Program staff were consistently positive and enthusiastic about the demonstrated skills they observed in group attendees during the group-delivered sessions, including the emergence of support between attendees. Outcomes on all measures improved between baseline and post-intervention; changes were statistically significant on measures of parents’ anxiety, parents’ self-efficacy, parents’ skills, and parenting quality.

Conclusions:

The Enhancing Connections-Group delivered cancer parenting program has potential to improve behavioral-emotional outcomes on standardized measures of skills and emotional adjustment in parents, parent-surrogates and children. Future testing is warranted.

Implications for Psychosocial Providers:

After a brief training, a fully manualized cancer parenting program can enhance parenting competencies and parent-reported child outcomes.

Background:

Approximately 381,777 children were newly impacted with a parent who was initially diagnosed with cancer in 2018 (American Cancer Society, 2018; Weaver, Rowland, Alfano, & McNeel, 2010). This number does not include the multiple thousands of children already living with a parent with cancer.

Parents diagnosed with cancer experience high rates of depressed mood and affective problems for up to or longer than two years after initial diagnosis (Fann et al., 2008). Even in the absence of depressed mood, treatment-related pressures from the cancer can diminish the parent’s physical or emotional availability to the child (Brown et al., 2007; Compas, Worsham, Ey, & Howell, 1996; Fann et al., 2008; Lewis, 2011; Lewis et al., 2000; Shands, Lewis, & Zahlis, 2000; Sigal, Perry, Robbins, Gagne, & Nassif, 2003; Vannatta, Ramsey, Noll, & Gerhardt, 2010; Watson et al., 2006). Side effects from chemotherapy, hormonal therapy, surgery or radiation treatment often cause months of symptoms, including sleep and mood disturbances and extreme fatigue, all of which have the potential to impact the child (Rauch & Muriel, 2003).

Although diagnosed parents want to be supportive in interacting with their child about the cancer, they report being too distressed, symptomatic, or overwhelmed to be the attentive and caring parent they want to be (Behar, 2000; Zahlis & Lewis, 1998). Within this altered home and parenting environment, children are primarily on their own to interpret the cancer and the parents’ changed behavior (Behar, 2000; Issel, Ersek, & Lewis, 1990; Zahlis & Lewis, 1998). Unfortunately, an estimated 22–33% of children living with parental cancer reach or exceed clinical levels of distress on standardized measures of behavioral-emotional adjustment (Huizinga, van der Graaf, Visser, Dijkstra, & Hoekstra-Weebers, 2003; Nelson & While, 2002; Osborn, 2007; Visser et al., 2005; Watson et al., 2006). Even children who score in the “normal” range on standardized measures are concerned about their ill parent, their own well-being, and worry about their family (Al Mulla & Lewis, in press; Lewis, 2008).

In an attempt to make sense of the changes they see in their parent and in the household that are brought on by the cancer, children may generate their own images and explanations – often erroneous ones – about the cancer (Armsden & Lewis, 1993) the majority (81%) worry their parent will die from the cancer, even early stage disease (Zahlis, 2001). Some children explain the parent’s cancer or negative mood by thinking they caused it or made it worse. Such internal attributions are expected to be sources of increased anxiety in the child (Armsden & Lewis, 1993, 1994). To complicate the situation more, children, even children with nightmares and crying spells, hold back disclosing their questions, fears or worries to their ill parent, not wanting to further burden an already distressed parent (Lewis, 2010; Lewis et al., 2000). This means that the child’s experience with the parent’s cancer is typically withheld from the parent, challenging the child to manage the illness and its impact on their own. Further adding to the complexity, parents may not want to talk about the cancer with their child, fearing that such conversations will raise or increase the child’s anxiety. The mantra for a well-meaning parent is commonly, parents should care, not scare their child.

Despite the multiple thousands of affected parents and children and the magnitude of their distress, there are few services and materials to help the parent manage the toll of their cancer on the child. There is only one completed Phase III clinical trial of a cancer parenting education program, the Enhancing Connections Program (EC), a 5-session fully scripted educational counseling program that was tested for efficacy in a randomized control trial in 6 regions in the U.S (Lewis et al., 2015). See Table 1 for a summary of the intervention sessions. The goals of the EC were to assist parents minimize the emotional toll of the parent’s cancer on their child, add to the parent’s skills and confidence to communicate with and support their child about the parent’s cancer, and to assist the child’s ways of coping with their cancer-related concerns. Together, these parenting behaviors were hypothesized to improve the child’s behavioral-emotional functioning (Lewis et al., 2015).

Table 1:

Description of Intervention Sessions for Group Delivery

Session Name	Session Content
Session 1: Anchoring yourself to help your child	Session 1: Describes how parent’s own emotions may interfere with parent-child communication; offers strategies for putting emotions aside when talking about illness with child. Homework: List names of support people who can be a listener for the parent.
Session 2: Adding to your listening skills	Session 2: Introduces the Listening Framework, a new framework from which parents can listen to their child about the cancer without judging, thereby gaining a better understanding of their child’s thoughts and feelings about the parent’s cancer. Homework: Engage child in conversation using skills from Listening Framework.
Session 3: Building on your listening skills	Session 3: Adds new skill to the Listening Framework: eliciting and assisting the child’s expression of concerns or feelings. Homework: Engage child in conversation about an aspect of the child’s experience with the cancer.
Session 4: Being a detective of your child’s coping	Session 4: Uses skills gained from the program to discover their child’s ways of coping with the parent’s cancer and what the child perceives as support from the parent. Homework: Engage child in conversation about stressful situation re: parent’s cancer and what parent can do to help child cope.
Session 5. Celebrating your success	Session 5: Invites parent to reflect on skills the parent gained from the program. Homework: Parents receive a worksheet to complete to help them identify resources available for future use.

Results from the Phase III trial revealed that parents in the experimental group improved on depressed mood, parenting skills, anxiety, parenting quality, and parenting confidence compared to controls. Further, children in the experimental group improved on behavioral-emotional adjustment: total behavior problems and externalizing problems significantly declined, anxiety/depressed mood significantly declined, and internalizing problems tended to decline, compared to controls. At 1-year, children in the experimental group remained significantly less depressed than controls on both mother- and child-reported measures.

Originally the EC program was delivered face-to-face to individual parents in their homes. However, such a program is not sustainable. What was still needed was a group-delivered version of the program that could be potentially sustained within real life provider settings in the community. The Cancer Support Community (CSC), a national non-profit organization committed to family-focused supportive services, was selected as a research collaborator to implement and evaluate a group-delivered version of the EC. Three Beta sites were selected by the CSC as pilot test sites. This paper reports on the process by which we collaborated with CSC to conduct a pilot feasibility study of the EC when delivered in a small group.

Preparation of EC Program Materials for Group Delivery

The original EC program consisted of a Patient Educator Manual, a Parent Workbook, and handouts for distribution during the sessions. Prior to formatting the EC program for group delivery, the original study team identified key elements of the original Enhancing Connections Program that produced the observed outcomes in the completed Phase III clinical trial: 1) brief didactic text at the beginning of each session that framed the session’s goals and rationale, drawn from published literature; 2) inviting comments from the parent multiple times during each session to actively engage them in the materials and session exercises; 3) engaging the parent in multiple interactional and written skill building exercises that built on each other, always modeling the skill first and then inviting the parent to carry it out; 4) inviting the parent to self-reflect on their own behavior after they enacted each skill in each session; 5) rehearsing the parent’s homework assignment; and 6) helping the parent generate a specific plan to carry out each at-home assignment.

Specific instructions were developed for each session to guide the Beta site group facilitators in implementing the session, keeping sessions within 1.5 hours so they could easily be carried out as part of the Beta test site’s typical length of small group delivery. Additional script was added to the Patient Educator’s Manual, now renamed the Group Facilitator’s Manual, to guide the timing of each session and the sequence and distribution of each session’s skill-building handouts.

The newly formatted EC-G Program materials were sent to the group facilitators and program directors at each of the Beta test sites for their review. Members of the originating UW research team then contacted each facilitator and director who were asked to assess the 1) fit of each session’s content for their clients; 2) relevance of the in-session exercises; 3) the potential acceptability of the in-session role-plays; and 4) their clients’ potential ability to complete the between-session homework. All 3 sites were excited about the program and confirmed its relevance for their population. No changes were made to the program materials as a result of these interviews.

In addition to reviewing the intervention manuals, drafts of the recruitment materials were sent to the Beta test sites for their review and discussion with the UW team. Changes were made to the recruitment materials to reflect each individual site’s requirements and Beta test site staff were encouraged to begin recruitment even before program training began.

Before beginning the training with the facilitators, members of the UW team held 3 conference calls with the 3 Beta test sites together to position the facilitators for participating in research. Group facilitators had no prior experience working within a research study. The conference calls had 5 main purposes: to educate the sites about aspects of research in which they would be involved; ways to maintain detailed spreadsheets to track eligibility and refusals; the procedure for obtaining signed informed consent; how to administer study questionnaires; and to answer questions they had about the study.

Training Beta Test Sites in Cancer Support Community

Two group facilitators from each of the 3 Beta test sites were trained in the delivery of Enhancing Connections Program. See Table 2. The training took place face-to-face in a central location and included 2 days of intensive work. Over the course of the training all facilitators practiced delivering the five sessions. In addition to gaining practice, training included time for facilitators to ask questions about the materials. Following the completion of training, each facilitator was assigned to a specific UW research team member to answer questions as they arose and to debrief each delivered session after the program was initiated at the Beta test sites. Each trainee exited the training with a fully scripted Group Facilitator Manual, a Parent’s Workbook, and 5 checklists in order to self-assess the quality of their delivery of each of the 5 sessions. See Figure 1 for an example of items from one of the Performance Checklists.

Table 2:

Summary of Training Schedule

	Day 1 of Training
10:00 am	Welcome and Introductions
10:20 am	Understanding the theory (SCT) behind the program design
10:35 am	Parents with cancer discussion; Overview of the Enhancing Connections Program and materials; overview of session structure
11:00 am	Training on the delivery of Session one
12:45 pm	Lunch
1:30 pm	Training on the delivery of Session two (including Parenting roles exercise)
3:00 pm	Break
3:15 pm	Training on Session Three (including Enacting the roles)
4:45 pm	Debrief the Day
5:30 pm	Training ends for the day
	Day 2 of Training
9:00 am	Training on Session Four (including creating open-ended question exercise)
10:45 am	Training on Session Five & Review of All Sessions
12:30 pm	Lunch & Q & A
1:15 pm	Additional practice on skill building pieces
3:00 pm	Training ends for the day

Figure 1:

Example items from Session 3 Performance Checklist

The study was marketed using four primary channels: presentation to oncology providers, direct outreach to patients and families at local cancer treatment centers, study brochures and recruitment materials for self-referral at oncology clinics and Beta test sites, and electronic dissemination of study brochures and recruitment materials. The study was presented to nurse navigators, clinical trial nurses, social workers, and during Grand Rounds and cancer committees at local cancer centers. When possible, weekly or biweekly contact was done with oncology providers for potential referrals. Study brochures were displayed at Beta test site locations, cancer centers, and oncology care providers’ offices. They were also mailed to those on the membership roster of each Beta test site. Additionally, study announcements were posted on the Beta test site web pages/Facebook pages/monthly calendars/e-blasts and were sent to oncologists, cancer centers, schools, churches, local newspapers, radio and TV news programs & community partners including youth programming organizations.

Study Methods for Pilot Feasibility Study

Eligibility criteria:

Parents or surrogate parents were enrolled if they were diagnosed with non-metastatic cancer of any type (Stage 0-III) within the past 12 months; read and wrote English among their languages of choice; and were rearing a child 5–17 years old living at home at least 50% of the time who had been told their parent’s cancer diagnosis. Parents were excluded if their child had a serious or chronic health condition that would preclude their having conversations with the parent in the home about the parent’s cancer as part of the program.

Potential participants either self-referred to the study or were referred by their oncology providers. Potential study participants were given a brief intake screening by the Beta test site’s study staff to assure eligibility and to provide an opportunity for the potential subject to ask questions about the program and the study.

Once their questions were answered and they had continued interest in participating, potential study participants were invited to attend the next scheduled Session 1 of the Enhancing Connections-Group Program. At the beginning of the session they were asked to complete a consent form and baseline questionnaires. The facilitator for the group was available during consent and questionnaire administration to answer questions about the consent or study questionnaires. After obtaining signed informed consent and baseline measures, Session 1 was delivered. Sessions were scheduled at 2-week intervals. At the end of the program (Session 5) the parent was asked to complete a 2^nd set of questionnaires that was the same set as baseline measures.

Study Measures:

Standardized questionnaires with well-established validity and reliability were used to assess the short-term impact of the EC-G. All measures were the same as those used to assess efficacy in the original EC trial; psychometric details were reported earlier (Lewis et al., 2015).

Depressed mood.

Maternal depressed mood was measured by the 20-item Center for Epidemiological Studies-Depression Scale (CES-D) (Conerly, Baker, Dye, Douglas, & Zabora, 2002; Given et al., 2004; Hann, Winter, & Jacobsen, 1999; Radloff, 1977). Internal consistency reliability in the EC trial was 0.90 (Lewis et al., 2015).

Anxiety.

Maternal anxiety was measured by the 20-item Spielberger State-Trait Anxiety Inventory (STAI) (Spielberger, Sydeman, Owen, & Marsh, 1999). Internal consistency reliability in the EC trial was 0.96 (Lewis et al., 2015).

Parenting self-efficacy, CASE – Help Child subscale.

Parenting self-efficacy was measured by the 9-item self-reported Help Child subscale of the Cancer Self-efficacy Scale (Lewis, 2011). The Help Child subscale measured the parent’s confidence in being able to talk with the child about the child’s cancer-related concerns; e.g., “I can assist my child to talk out his/her worries about my cancer.” The internal consistency reliability for this subscale in the original EC trial was 0.97 (Lewis et al., 2015).

Parenting quality.

Parenting quality was measured by 7 items on the Family-Peer Relationship Scale (FPRQ), the parent’s report of the type of interpersonal communication the parent has with the child (Ellison, 1985). There are two subscales, Disclosure of Negative Feelings, e.g., “How likely is it that the child will share if s/he is feeling mad or angry?” and Disclosure of Bad or Sad Things Happening, e.g., “How likely is it that the child will share if something bad happens to the child. “ The internal consistency reliabilities were 0.89 and 0.86, respectively, in the original EC clinical trial (Lewis et al., 2015).

Parenting skills.

Parenting skills were measured by the 8-item parent-reported Parenting Skills Checklist that described the interactional behaviors parents used to assist their child disclose, discuss, and cope with the parent’s cancer. The checklist consists of two subscales, the Elicitation subscale, e.g., “I draw out my child’s concerns about the breast cancer,” and the Connecting and Coping subscale, e.g., “I work with my child to help my child manage the child’s stress related to my cancer.” Internal consistency reliabilities for the Elicitation and the Connecting and Coping subscales were 0.74 and 0.90, respectively in the original EC trial (Lewis et al., 2015).

Child behavioral-emotional adjustment.

The child’s behavioral-emotional adjustment was measured by the Child Behavior Checklist (CBCL), a parent-reported scale measuring a broad range of behavior problems in children ages 6–18 (Achenbach & Rescorla, 2001). Response options range from 0 to 2 from “Not True (as far as you know)” to “Somewhat or Sometimes True” to “Very True or Often True.” The 35-item Externalizing score assesses a child’s aggressive, antisocial, and under-controlled behavior; the 32-item Internalizing score measures the child’s fearful, inhibited, and over-controlled behavior. Example items on the Externalizing score include: the child arguing a lot or being disobedient in school. Example items from the Internalizing score include the child feeling or complaining that no one loves him/her or the child feeling dizzy or lightheaded. The internal consistency reliabilities for the EC clinical trial were 0.97 for Total Behavior Problems, 0.90 for the Internalizing score, and 0.94 for the Externalizing score (Lewis et al., 2015).

Study Results

Study Participants

Sixteen participants enrolled and completed baseline and post-intervention questionnaires. Participants were predominantly women (n=15, 93.8%). The male participant was the the spouse of the diagnosed parent. Participants averaged 42.7 ± 4.9 years of age. All participants completed some college or higher education and 10 (62.5%) were working full or part time at or away from the home at their time of participation in the study. The majority of the children were female (n=11, 68.8%), and the average age of the children was 10.4 ±2.4 years of age. The average number of children in each home was 2 ± 0.7 but the diagnosed parent was asked to select one child to be the referent child for the study. A referent child was necessary in order to anchor the parent’s at-home skill building exercises to one child and to anchor the parent-reported measures of child adjustment to one child. Parents were explicitly told they could apply the program to all of their children but, for purposes of the study, the program needed to focus on the referent child in the study.

Eleven of the 15 diagnosed parents were diagnosed with breast cancer, one was diagnosed with colorectal cancer, one had basal cell skin cancer, one had bladder cancer, and one had lymphoma. Stages ranged from 0 – III, with 3 Stage 0, 1 Stage I, 9 Stage II, and 3 diagnosed with Stage III cancer. At baseline, ten parents scored above the clinical cutoff on measures of depressed mood or anxiety.

Study Aim 1: To examine the feasibility of the study

Feasibility was examined in 3 areas: recruitment and retention; dosage and fidelity in delivering the program; and program acceptability.

Recruitment and retention were monitored by tracking enrollment records at each of the Beta test sites; the number of sessions each participant attended; reasons for non-attendance (when available); and attrition (from all causes). These records were maintained at each Beta test site and were electronically transmitted to the study team’s statistician. A total of 60 people across all 3 Beta test sites expressed initial interest in the study. Of those, 21 enrolled. Reasons for non-enrollment were ineligible (n=21); unable to commit to participating in all 5 sessions (n=5); unable to contact after expressed initial interest (n=10); and no longer interested after expressed initial interest (n=3.)

Twenty-one parents were ineligible because the child was younger than 5 years (n=2); cancer was greater than Stage III (n=10); the parent’s cancer diagnosis was not their initial cancer diagnosis (n=2); the child had not been told their parent’s cancer diagnosis (n=2); cancer was diagnosed longer than 12 months (n=4); and the child, not the parent, had the cancer (n=1).

Of the 21 participants enrolled, 3 dropped prior to signing consent forms and completing baseline questionnaires. Eligible parents dropped because they were no longer interested (n=1) or were too ill to continue (n=2). Of the remaining 18 participants, 2 withdrew after 2 sessions. One could not be contacted and the other parent became too ill to continue. The remaining 16 participants completed 76 of 80 potential sessions. See Table 3.

Table 3:

Summary of enrollment and attrition

Enrollment Information	Number
# Enrolled	21
# Completed	16
# Total sessions completed	76 of 80 possible
# Dropped before baseline data	3
Reasons for Dropping	No longer interested (n=1) Too ill to continue (n=2)
# Withdrew after partial session completion	2
# Sessions completed for withdrawn participants	2
Reasons for Withdrawing	Too ill to continue (n=1) Could not contact (n=1)

Dosage and fidelity were monitored for each intervention session using a self-reported Performance Checklist. At the immediate conclusion of each session, the group facilitator completed the session-specific form and e-transmitted it to the team’s statistician. Performance checklists were specific to each session and focused on specific behavior the group facilitator needed to do during each session. Items were scored 0–2: 2 denoted behavior occurred; 1 denoted behavior was partially carried out; and 0 denoted the behavior was absent. Over all sites and all sessions, which totaled 40 sessions for the 3 Beta test sites, the majority of scores for each criterion on each Performance Checklist was 2.

Program acceptability was assessed by 1) attendance rate for each Beta test site and for each of the 5 program sessions; 2) duration of each program session; and 3) rate of success in scheduling and completing intervention sessions by program staff at each site.

Attendance for each session varied by site and by group. Of the 21 participants enrolled, 3 dropped prior to completing any sessions and 2 withdrew after only 2 sessions. Of the 16 who completed baseline and post-intervention assessments, 76 sessions were completed out of a potential of 80 sessions. A total of 61 (80.3%) sessions were completed as scheduled and 15 (19.7%) were completed as makeup sessions. There were 4 sessions for which the group facilitator was unable to schedule a make-up session. In those cases, 3 were missed by one participant who became too ill but wanted to complete the assessment and 1 session was missed for a participant who could not attend the last session but still completed the post-intervention assessment.

Group sessions ranged in length from 40 minutes to 1 hour and 45 minutes and varied if members arrived late interrupting the flow of the session; homework discussion with lengthy responses were elaborated by members during in-session exercises, or when organic support was offered between attendees during the session. Time to complete signed informed consent and baseline data was additional time and ranged from 20–45 minutes. Time for final data collection ranged from 10–20 minutes.

Study Aim 2: To examine the impact of the group-delivered program using a pre-posttest design

Short-term impact was evaluated by comparing pre- and posttest scores on the standardized questionnaires with an intent to treat analysis. See Table 4. We answered two questions about short-term impact: First, did the standardized measures improve between baseline and post-intervention? Second, did baseline scores in the clinical (non-normal) range become normal post-intervention? Relatedly, was there evidence of backsliding in which a post-intervention score got worse compared to the baseline score?

Table 4:

Results from Within-Group Analysis of Parent’s & Children’s Outcomes in EC-G (n=16)

	Mean ± SD	Median	p*
Parent’s Depressed Mood & Anxiety
Depressed Mood (CES-D)
Pre-test	14.63 ± 11.4	14.50	.175
Post-test	11.63 ± 8.9	9.50
Anxiety (STAI)
Pre-test	40.88 ± 14.2	43.00	.024
Post-test	33.44 ± 10.7	29.50
Parenting Self-efficacy
Help Child Subscale
Pre-test	54.13 ± 18.7	56.00	.001
Post-test	78.38 ± 8.2	79.50
Parenting Quality
Disclosure of Negative Feelings
Pre-test	11.44 ± 2.2	11.00	.001
Post-test	14.81 ± 1.9	14.00
Disclosure of Bad or Sad Things
Pre-test	9.88 ± 2.7	9.50	.007
Post-test	12.19 ± 2.0	12.50
Parenting Skills
Elicitation Skills
Pre-test	5.81 ± 1.8	6.00	.001
Post-test	8.19 ± 0.5	8.00
Connecting & Coping Skills
Pre-test	13.88 ± 7.0	16.00	<.001
Post-test	23.94 ± 2.7	24.00
Child’s Behavioral-Emotional Adjust.
Internalizing T-score
Pre-test	54.94 ± 13.4	59.00	.077
Post-test	51.31 ± 12.6	53.00
Externalizing T-score
Pre-test	50.06 ± 11.7	51.50	.574
Post-test	49.38 ± 10.4	49.50
Anxious/Depressed Behavior
Pre-test	57.25 ± 6.8	55.50	.683
Post-test	56.44 ± 5.9	57.00
Withdrawn/Depressed Behavior
Pre-test	56.94 ± 6.5	55.00	.204
Post-test	55.19 ± 6.1	53.50

^*Wilcoxon Signed Ranks Test; 2-tailed test

Standardized Outcome Measures

Differences between baseline and post-intervention scores were computed using the non-parametric Wilcoxon Signed Ranks test, 2-tailed, p=.05. See Table 4. All mean scores on all standardized outcome measures improved between baseline and post-intervention. Scores on parental anxiety, parenting self-efficacy, parenting skills, and parenting quality significantly improved compared to baseline. Specifics follow.

Depressed Mood and Anxiety

Parents’ scores on depressed mood and anxiety decreased between baseline and post-intervention assessments and parents’ anxiety significantly changed (p=.024) but the change was not significant for parents’ depressed mood.

Of the 8 parents who scored above the clinical cutoff of 16 on the CES-D at baseline, 4 remained depressed at posttest while 4 others scored in the normal range.

Nine parents scored above the clinical cutoff score of 39 on the STAI at baseline and 4 remained clinically anxious at post-intervention. Backsliding occurred for 1 parent whose baseline anxiety score was normal but whose post-intervention score reached a clinical level of distress.

Parenting Self-efficacy

Parents’ scores on parenting self-efficacy significantly improved between baseline and post-intervention (p=.001). Parenting self-efficacy scores on the Help Child subscale improved by 44.8% indicating that parents felt more confident in helping their child communicate and talk about the parent’s cancer.

Parenting Quality

Parents’ scores on both subscales of parenting quality significantly improved. Scores on the Disclosure of negative feelings subscale significantly increased (p=.001) as did the Disclosure of bad or sad things subscale (p=.007). These significant changes reflected their child’s heightened level of disclosure of the child’s negative feelings or their child’s report of negative events that happened to the child.

Parenting Skills

Parents’ scores on both subscales of the Parenting Skills Checklist significantly improved. Parents’ Elicitation Skills significantly increased (p=.001) and parents’ skills in helping their child cope significantly increased (p<.001).

Scores on the Elicitation Skills subscale and the Connecting and Coping Skills subscale improved by 41.0% and 72.6%, respectively.

Child Behavioral and Emotional Adjustment

Parents’ report of their child’s behavioral emotional adjustment improved between pre- and post-intervention but improvements were not statistically significant. Although there was a statistical tendency for Internalizing problems to diminish (p=.077), improvements were not significant on parent-reported measures of the child’s Externalizing Problems, Anxious/Depressed Behavior, or Withdrawn/Depressed Behavior.

Study Limitations

Caution is in order in interpreting study results. The small study sample precludes generalizing study outcomes. Parent-reported measures of self- and child-adjustment may be affected by systematic bias, e.g., self-enhancement or social desirability bias. The study assumed response efficacy in the enrolled parents, namely, that parents believed the program had the potential to result in positive outcomes in their own and their child’s adjustment. We did not measure that assumption. Finally, it is always possible, given the within-group design, that other factors could have caused the observed improvements in parents’ and children’s outcomes.

Conclusion

Partnering with the Cancer Support Community was a highly successful collaboration that allowed a prior efficacy tested program to be translated and implemented as a potentially sustainable group-delivered program in providers’ settings. Each session’s length and format were easily integrated into the structure and workflow at 3 Beta test sites. Group facilitators’ observations of the group members’ level of engagement and enthusiasm during each session was very positive, including the emergence of interpersonal support during the sessions. The Group Facilitator Manual was easily used to carry the parents through each session with ease and high fidelity.

Although all standardized measures of parent and child outcomes improved from baseline to exit from program, not all improvements were statistically significant, likely due in part to the small sample size. Despite the small sample size, there were statistically significant improvements in the parents’ anxiety, parents’ self-efficacy, two measures of parenting quality, and two measures of parenting skills. Further testing is warranted with a larger sample size within a randomized control group design. In future studies, eligibility criteria need to expand to include parents and parent surrogates who were not eligible to receive the program. These include those with advanced cancer, younger children, and those diagnosed longer than 12 months.

Marketing needs to build on the lessons learned from this feasibility study and expand to include outreach to new community partners; using printed glossy recruitment brochures; using local media coverage with well accepted channels, including news and radio releases; and using social media.

Implications for Psychosocial Providers

A university and non-profit collaboration has high potential to positively enhance client outcomes when the collaboration translates and implements an efficacy-tested program. Group delivery after training using a fully manualized intervention manual provided high fidelity services that were easily integrated and complementary to existing services at the Beta test sites.

Key bullet points:

A fully manualized intervention manual of an efficacy-tested program can be readily translated into practice.

Group-delivered programs of an efficacy-tested intervention have the potential to positively affect the behavioral-emotional adjustment of diagnosed child-rearing parents.

A brief training period of an evidence-based intervention can result in positive outcomes on standardized measures of parents’ adjustment.