Advanced parental cancer and adolescents: Parenting issues and challenges.

BACKGROUND: An estimated 609,820 child-rearing adults in 2023 died from advanced cancer, affecting 153,675 dependent children. Although children are known to suffer significant distress when a parent is diagnosed with cancer, few studies have described parents' views of their adolescent's behavioral response to their advanced cancer or what the parent did to interpret or manage that response. OBJECTIVES: To describe patient-reported concerns about their adolescent and how they responded to their adolescent's behavior. METHODS: Single occasion interviews were administered to 6 adolescent-rearing parents with Stage IV cancer. Interviews were analyzed using inductive content analysis by trained coders. Trustworthiness of results was protected through peer debriefing, coding to consensus, and maintaining an audit trail. RESULTS: The core construct that explained study data was Being There without Taking Over, comprised of 4 domains: Struggling to Read My Child, Attempting to Talk with My Child about My Cancer, Trying to Maintain Optimism, and Understanding My Child. CONCLUSIONS: Parents were deeply concerned about the impact of their advanced cancer on their adolescent but were unable to distinguish between cancer-related distress and adolescent angst. They feared initiating cancer-related discussions and struggled with their own feelings of guilt and parental inadequacy but did not turn to professionals for help. SIGNIFICANCE OF RESULTS: Adolescent-rearing patients with advanced disease need to be triaged into services that offer a framework from which parents can interpret their child's behavior and learn ways to have adolescent-appropriate conversations about the cancer. Such services should also help parents gain skills to manage feelings of parental inadequacy and guilt. In the absence of services, parents struggle and do not know how to interpret and respond to their adolescent's cancer-related behavior.

A pilot feasibility study of Conexiones, a telephone-delivered cancer parenting education program for Hispanic mothers.

OBJECTIVE: To test the short-term impact of Conexiones, a culturally adapted cancer parenting education program for diagnosed child-rearing Hispanic mothers. DESIGN: Single group, pre-post-test design. SAMPLE: 18 U.S. Hispanic mothers diagnosed within 2 years with early-stage cancer (0-III) raising a child (5-17 years). METHODS: Participants completed consent, baseline measures, and five telephone-delivered Conexiones sessions at 2-week intervals from trained patient educators in English or Spanish. Outcomes were assessed at baseline and at 3 months. RESULTS: Maternal depressed mood, parenting self-efficacy, and parenting quality significantly improved. Children's anxious/depressed mood tended to significantly improve. Outcomes did not co-vary with mothers' level of acculturation. CONCLUSIONS: Conexiones appears to positively improve Hispanic mothers' distress and parenting competencies; efficacy testing is warranted within a larger randomized control trial. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: A brief, culturally adapted cancer parenting education program has potential to enhance Hispanic mothers' and children's behavioral-emotional adjustment to a mother's cancer.

Helping Us Heal: telephone versus in-person marital communication and support counseling for spouse caregivers of wives with breast cancer.

PURPOSE: (1) To test the short-term impact of Helping Us Heal (HUSH), a telephone-delivered counseling program for spouse caregivers of women with breast cancer. (2) To compare outcomes from HUSH with outcomes from a historical control group which received the same program in-person. METHODS: Two-group quasi-experimental design using both within- and between-group analyses with 78 study participants, 26 in the within-group and 52 in the between-group analyses. Spouse caregivers were eligible if the wife was diagnosed within 8 months with stage 0-III breast cancer and were English-speaking. After obtaining signed informed consent and baseline data, 5 fully scripted telephone intervention sessions were delivered at 2-week intervals by patient educators. Spouses and diagnosed wives were assessed on standardized measures of adjustment at baseline and immediately after the final intervention session. RESULTS: Within-group analyses revealed that spouses and wives in HUSH significantly improved on depressed mood and anxiety; spouses improved on self-efficacy and their skills in supporting their wife. Additionally, wives' appraisal of spousal support significantly improved. Between-group analyses revealed that outcomes from HUSH were comparable or larger in magnitude to outcomes achieved by the in-person delivered program. CONCLUSIONS: A manualized telephone-delivered intervention given directly to spouse caregivers can potentially improve adjustment in both spouses and diagnosed wives but study outcomes must be interpreted with caution. Given the small samples in the pilot studies and the absence of randomization, further testing is needed with a more rigorous experimental design with a larger study sample.

Spouse caregivers' attributed gains from a skill-based counseling program.

OBJECTIVE: To describe spouse caregivers' perceived gains in their own words from participating in a fully manualized 5-session educational counseling program whose goals were to enhance their self-care and skills to interpersonally support their wife with breast cancer. METHODS: Interviews from 81 spouses obtained 7 months after exiting from a fully manualized educational counseling program, Helping Her Heal, were content analyzed using inductive coding methods adapted from grounded theory. Trustworthiness of study results was protected by coding to consensus, formal peer debriefing, and maintaining an audit trail. RESULTS: Analysis yielded 3 conceptual domains: Giving Me Structure; Adding Skills to Help Her and Us; and Gaining Insights into Myself and My Wife, all of which reflected practical things on which spouses could take action and ways they could take care of themselves, support their wife, and from which they gained insight into their own and their wife's response to the breast cancer. CONCLUSIONS: Findings suggest that short-term, fully manualized counseling programs can provide opportunities and practical ways spouse caregivers are able to gain interpersonal communication, self-care skills, and personal insights. This scripted model of counseling is a way in which to deliver educational counseling with self-reported benefits, even though the program is fully scripted and not uniquely fashioned for each caregiver's unique experience. CLINICAL TRIAL REGISTRATION NUMBERS: NCI-2013-01838 .

A pilot feasibility study of a group-delivered cancer parenting program: Enhancing Connections-Group.

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 group-delivered Enhancing Connections 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.

Pediatric Dental Procedure-Related Pain Assessment Practices in A Rural Alaskan Health Care Organization: A Qualitative Study.

Purpose: Acute pain experienced during dental procedures can lead to distress, difficulty with behavior guidance, and dental fear/avoidance. The purpose of this study was to explore dental providers' perceptions of pediatric procedure-related pain and acute pain assessment practices. Methods: Fifteen dental providers (53 percent female; nine dentists, three dental therapists, three dental hygienists) currently/formerly employed by a single rural Alaskan health care organization were interviewed using a semi-structured guide. Recorded interviews were transcribed, verified, and coded using inductive qualitative analytic methods. Results: Six providers suggested that pediatric procedure-related pain is rarely encountered. Providers who reported encountering it rely on observation of body language, facial expression, behavior, crying, and verbalization to know whether a child is experiencing procedural pain. Even when available, only four interviewees reported using standardized pain scales. Conclusions: Dental providers have mixed perceptions about whether they encounter pediatric procedure-related pain. There is high variability in how providersassess procedural pain, and approaches often are nonstandardized.

Upping my game as a parent: Attributed gains in participating in a cancer parenting program for child-rearing parents with advanced cancer.

OBJECTIVES: The objective of this study was to describe in the words of child-rearing parents with incurable cancer, what they had gained or thought about as a result of participating in a five-session, scripted, telephone-delivered psycho-educational parenting intervention, the Enhancing Connections Program in Palliative Care. METHODS: A total of 26 parents completed the program. Parents' responses were audio-recorded and transcribed verbatim and verified for accuracy. The analysis proceeded through four steps: unitizing, coding into categories, defining categories, and formation of a core construct that explained parents' attributed gains. Trustworthiness of study results was protected by coding to consensus, formal peer debriefing, and maintaining an audit trail. RESULTS: Although 50% reached or exceeded clinical cutoff scores on anxiety and 42% reached or exceeded clinical cutoff scores on depressed mood, parents extensively elaborated what they gained. Results revealed six categories of competencies they attributed to their participation in the program: (1) being ready for a conversation about my cancer, (2) bringing things out in the open, (3) listening better to my child, (4) getting my child to open up, (5) not getting in my child's way, and (6) changing my parenting. CONCLUSIONS: Despite an extensive symptom burden, parents with incurable cancer attributed major gains from a brief, fully scripted, cancer parenting communication intervention. A manualized telephone-delivered educational counseling program for symptomatic parents with incurable cancer has the potential to augment competencies for parents as they assist their children manage the cancer experience.

Enhancing Connections-Palliative Care: A Quasi-Experimental Pilot Feasibility Study of a Cancer Parenting Program.

Background: In 2018, >75,000 children were newly affected by the diagnosis of advanced cancer in a parent. Unfortunately, few programs exist to help parents and their children manage the impact of advanced disease together as a family. The Enhancing Connections-Palliative Care (EC-PC) parenting program was developed in response to this gap. Objective: (1) Assess the feasibility of the EC-PC parenting program (recruitment, enrollment, and retention); (2) test the short-term impact of the program on changes in parent and child outcomes; and (3) explore the relationship between parents' physical and psychological symptoms with program outcomes. Design: Quasi-experimental two-group design employing both within- and between-subjects analyses to examine change over time and change relative to historical controls. Parents participated in five telephone-delivered and fully manualized behavioral intervention sessions at two-week intervals, delivered by trained nurses. Behavioral assessments were obtained at baseline and at three months on parents' depressed mood, anxiety, parenting skills, parenting self-efficacy, and symptom distress as well as children's behavioral-emotional adjustment (internalizing, externalizing, and anxiety/depression). Subjects: Parents diagnosed with advanced or metastatic cancer and receiving noncurative treatment were eligible for the trial provided they had one or more children aged 5-17 living at home, were able to read, write, and speak English, and were not enrolled in a hospice program. Results: Of those enrolled, 62% completed all intervention sessions and post-intervention assessments. Within-group analyses showed significant improvements in parents' self-efficacy in helping their children manage pressures from the parent's cancer; parents' skills to elicit children's cancer-related concerns; and parents' skills to help their children cope with the cancer. Between-group analyses revealed comparable improvements with historical controls on parents' anxiety, depressed mood, self-efficacy, parenting skills, and children's behavioral-emotional adjustment. Conclusion: The EC-PC parenting program shows promise in significantly improving parents' skills and confidence in supporting their child about the cancer. Further testing of the program is warranted.

Provider and community perspectives of dental therapists in Alaska's Yukon-Kuskokwim Delta: A qualitative programme evaluation.

OBJECTIVES: Dental therapists deliver preventive and basic restorative care and have been practicing since 2006 in Alaska's Yukon-Kuskokwim (YK) Delta. In this qualitative programme evaluation, we documented health providers' and community members' experiences with dental therapy. The goal of the evaluation was to develop a conceptual model of dental care delivery in Alaska Native Communities centred on dental therapists. METHODS: We developed semi-structured interview scripts and used snowball sampling to recruit 16 health providers with experience providing care in the YK Delta and 125 community members from six YK Delta Communities in 2017 and 2018. The six communities were a stratified convenience sample based on community-level exposure to dental therapists (high, medium and no exposure). Interview data were digitally recorded, transcribed, verified for accuracy and coded inductively into conceptual domains using content analytic methods. RESULTS: Providers believed individuals living in the YK Delta have benefited from clinic-based restorative care and community-based education provided by dental therapists. The restricted scope of dental therapy practice limits the complexity of care that may be offered to patients. However, community members expressed high satisfaction with the quality of care provided by dental therapists. Community members noted more widespread knowledge and evolving norms about oral health and believed dental therapists are helping to prevent disease and improve quality of life. Participants believed access to dental care for children has improved over the years, but felt that many adults in the YK Delta continue to have unmet needs. A potential barrier to sustained programme effectiveness is low retention of dental therapists in the region, driven primarily by reports that dental therapists feel overworked, stressed and geographically isolated. CONCLUSIONS: Dental therapists have contributed to the dental care delivery system in Alaska's YK Delta. Future opportunities remain within the system to address the needs of adults, develop strategies to retain dental therapists in the region and incorporate evidence-based, prevention-oriented strategies to improve oral health behaviours and reduce oral diseases.

Trying to Feel Normal Again: Early Survivorship for Adolescent Cancer Survivors.

BACKGROUND: Despite knowing the potential medical consequences of cancer treatment, little is known about how adolescents cognitively and emotionally frame, process, and manage in the early survivorship period. OBJECTIVE: The specific aims were to describe the worries, perceived challenges, and ways of dealing with these issues for adolescent cancer survivors in the early period of survivorship. METHODS: Twenty-nine adolescent survivors (12-18 years) completed a semistructured interview. Inductive coding methods adapted from grounded theory were used to analyze the data. RESULTS: Seven domains and 18 categories organized the adolescent's experience with early posttreatment survivorship. The domains included getting back to school; relationships with parents, siblings, friends; feeling changed by the experience; and concerns about relapse. CONCLUSIONS: This study contributes to our understanding of survivors' relationships with parents, siblings, and friends and survivors' models of the illness. Future studies are needed to understand how parents can help adolescents assume greater responsibility for their care, to understand what it is like for friends to have a peer with cancer and what behaviors by healthcare providers contribute to feelings of abandonment later in survivorship, and to better understand adolescent survivors' models of the illness and survivorship. IMPLICATIONS FOR PRACTICE: Study results suggest that nurses are in an ideal position to begin and to continue discussions with adolescent survivors about the adolescent's view of medical follow- up, its purpose and importance, and ways in which the adolescent can begin, early on, to engage in planning their own health during survivorship.

Helping Her Heal: Randomized clinical trial to enhance dyadic outcomes in couples.

OBJECTIVE: The objective of this study was to test the short-term efficacy of a brief, fully manualized marital communication and interpersonal support intervention for couples facing recently diagnosed breast cancer. METHODS: A total of 322 women diagnosed within 6 months with stages 0 to III breast cancer and their 322 spouse caregivers were enrolled. Spouses in the experimental group received five 30- to 60-minute intervention sessions at 2-week intervals by master's-prepared patient educators; controls received the booklet, "What's Happening to the Woman I Love?" Outcomes were assessed at 3, 6, and 9 months using the linear mixed models within an intent-to-treat analysis. RESULTS: Compared with controls, at 3 months, spouse caregivers significantly improved on standardized measures of depressed mood, anxiety, cancer-related marital communication, interpersonal support, and self-care. All differences except depressed mood and anxiety were sustained at 9 months. Wives significantly improved at 3 months on marital communication and positive appraisal of spouses' interpersonal support; gains remained significant at 9 months. Compared with controls on chemotherapy, wives in the experimental group additionally improved on depressed mood and tended to improve on anxiety. CONCLUSIONS: A brief, fully manualized intervention delivered directly to spouse caregivers early in the course of their wives' medical treatment improves caregivers' self-care and behavioral-emotional adjustment and wives' positive view of their spouses' support and communication. The brevity and manualized structure of the intervention argue strongly for its scalability, use in cost-sensitive settings, and its potential dissemination through e-health channels.

Caregivers' understanding of fluoride varnish: implications for future clinical strategies and research on preventive care decision making.

OBJECTIVE: To describe caregivers' understanding of fluoride varnish. METHODS: We administered the Oral Health Literacy Inventory for Parents within a pediatric dental clinic (N = 113). Caregivers were asked to read and define each item. Interviews were audio recorded, transcribed, and coded inductively. The main analyses focused on responses to "fluoride varnish" and were conducted at the response level. RESULTS: Of the 140 responses, 22.1 percent of the responses indicated lack of knowledge about fluoride varnish, 23.6 percent that it was for teeth, 8.6 percent as something in toothpaste or water, and 45.7 percent as something that helps teeth. About 52.7 percent of responses indicated lack of knowledge, incomplete, or incorrect understanding. At the caregiver-level, 50.4 percent did not know what fluoride varnish was or provided an incorrect or incomplete response. CONCLUSION: Many caregivers have an incomplete or inaccurate understanding of fluoride varnish, which has implications for how healthcare providers communicate about preventive care and future research on caregiver decision making.

The Enhancing Connections-Telephone study: a pilot feasibility test of a cancer parenting program.

PURPOSE: The purposes of the study were to (1) test the short-term impact of a telephone-delivered cancer parenting education program, the Enhancing Connections-Telephone (EC-T) Program, on maternal anxiety, depressed mood, parenting competencies, and child behavioral-emotional adjustment and (2) compare those outcomes with outcomes achieved from an in-person delivery of the same program (EC). METHODS: Thirty-two mothers comprised the sample for the within-group design and 77 mothers for the between-group design. Mothers were eligible if they had one or more dependent children and were recently diagnosed with stages 0-III breast cancer. Mothers in both groups received five intervention sessions at 2-week intervals from a patient educator using a fully scripted intervention manual. RESULTS: Outcomes from the within-group analysis revealed significant improvements on maternal anxiety, parenting competencies, and the child's behavioral-emotional functioning. Outcomes from the between-group analysis showed the EC-T did as well or better than EC in positively affecting maternal anxiety, depressed mood, parenting competencies, and the child's behavioral-emotional adjustment. Furthermore, the EC-T had a significantly greater impact than the EC on maternal confidence in helping their family and themselves manage the cancer's impact and in staying calm during emotionally charged conversations about the breast cancer with their child. CONCLUSIONS: Regardless of the channel of delivery, the Enhancing Connections Program has the potential to positively affect parenting competencies and behavioral-emotional adjustment in mothers and dependent children in the first year of stages 0-III maternal breast cancer. Its positive impact from telephone delivery holds promise for sustainability.

The Enhancing Connections Program: a six-state randomized clinical trial of a cancer parenting program.

OBJECTIVE: The purpose of this study was to test the efficacy of a cancer parenting program for child rearing mothers with breast cancer, the Enhancing Connections Program. Primary goals were to decrease maternal depressed mood and anxiety, improve parenting quality, parenting skills and confidence, and enhance the child's behavioral-emotional adjustment to maternal breast cancer. METHOD: A total of 176 mothers diagnosed within 6 months with Stage 0 to Stage III breast cancer and their 8- to 12-year-old child were recruited from medical providers in 6 states: Washington, California, Pennsylvania, Minnesota, Arizona, and Indiana. After consenting and obtaining baseline measures, study participants were randomized into experimental or control groups. Experimental mothers received 5, 1-hr educational counseling sessions at 2-week intervals; controls received a booklet and phone call on communicating and supporting their child about the mother's cancer. Outcomes were assessed at 2 and 12 months. RESULTS: Compared to controls, at 2 months experimental mothers significantly improved on depressed mood and parenting skills; experimental children improved on behavioral-emotional adjustment: total behavior problems, externalizing problems, and anxiety/depressed mood significantly declined. At 1 year, experimental children remained significantly less depressed than controls on both mother- and child-reported measures. The intervention failed to significantly affect parenting self-efficacy or maternal anxiety. CONCLUSIONS: The Enhancing Connections Program benefitted mothers and children in specific areas and warrants refinement and further testing.

Coming to grips with breast cancer: the spouse's experience with his wife's first six months.

This study examines the experiences of 48 spouses of wives newly diagnosed with local or regional breast cancer. Their reported experiences were organized into the core construct of coming to grips reflected by four domains: (1) feeling nailed by the breast cancer, (2) changing us, (3) taking care of me, and (4) making things work. Prior studies have underestimated the extent to which the assumptive world and day-to-day lives of spouses are shattered by the diagnosis of breast cancer and the work they do to guess how to be supportive to their wives. Interventions are needed that directly assist spouses add to their ways of managing the intrusion of their wife's breast cancer in their lives.

Helping Her Heal: a pilot study of an educational counseling intervention for spouses of women with breast cancer.

Breast cancer is known to cause substantial anxiety, depressed mood, and diminished marital functioning in the diagnosed woman's spouse. Despite the scope and magnitude of these issues, few intervention studies have included spouses or addressed the causes of their lower functioning. The purpose of this pilot study was to evaluate the short-term impact of a 5-session, clinic-based, educational counseling intervention for spouses whose wife was recently diagnosed with early stage breast cancer. The goals of the intervention were to enhance spouses' skills and confidence to communicate and interpersonally support his wife about the breast cancer as well as improve spouses' self-care, depressed mood, anxiety, and marital adjustment. Pre-post-test results obtained from 20 spouses from valid and reliable standardized questionnaires showed significant improvements in spouses' depressed mood, anxiety, skills, self-confidence, and self-care. Confidential post-intervention interviews with spouses and wives included detailed examples of positive changes in the spouse's communication and support to his wife about the breast cancer, diminished tension in the spouse, and improved quality in the couple's relationship. Further evaluation of the Helping Her Heal Program is warranted within a clinical trial.

The enhancing connections program: pilot study of a cognitive-behavioral intervention for mothers and children affected by breast cancer.

In 2005, approximately 211,240 women in the US will be diagnosed with early stage breast cancer and an estimated 22% will be child rearing. Research reveals that both mothers and children have elevated distress attributed to the cancer; struggle with how to talk about and deal with the impact of the cancer; and both fear the mother will die. The Enhancing Connections Program (EC) was developed to reduce this cancer-related distress and morbidity. The program involves five, 1-hour educational counseling sessions delivered at 2-week intervals by specially trained clinicians. This study reports on the program's short-term impact on mothers' and children's adjustment. Thirteen households were recruited within 7.5 months of the mother's diagnosis with early stage breast cancer. Impact was evaluated within a single group design using data obtained from standardized questionnaires with established reliability and validity. Results revealed significant improvements in the mother's depressed mood, anxiety, and self-confidence to assist her child (mother report). There were also significant decreases in the child's behavioral problems (mother and father report); the child's cancer-related worries (child report); and the child's anxiety/depressed mood (mother and father report). Further evaluation is warranted within a clinical trial.