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1.
Psychooncology ; 33(3): e6314, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38459736

ABSTRACT

OBJECTIVE: Psychological distress is prevalent in couples facing breast cancer. Couples often deal with breast cancer as a unit instead of as individuals. Couple's dyadic coping is important for their adjustment to breast cancer; however, little is known about how couple's coping congruence influences their distress. This study examined how common dyadic coping (CDC) and coping congruence impact psychological distress in couples facing breast cancer. METHODS: Baseline data were analyzed from 343 women with recently diagnosed early-stage breast cancer and their partners who participated in a randomized clinical trial. Psychological distress was indicated by depressed mood and state anxiety. Common dyadic coping was measured by a self-report scale. Coping congruence was assessed by the absolute difference between a woman's and her partner's CDC scores. RESULTS: Higher CDC scores were associated with lower psychological distress in both women and partners. In the CDC subscales, women who suffered less scored higher on open communication, sharing a positive outlook, and lower on avoidance coping. Partners who suffered less scored higher on open communication, sharing a positive outlook, spending time talking, and lower on avoidance coping. Greater congruence in CDC was associated with lower psychological distress in women and their partners. Congruence in sharing a positive outlook benefited both members of the dyad; congruence in avoidance coping significantly benefited patients; congruence in open communication significantly benefited partners. CONCLUSIONS: CDC and its congruence in specific areas have potential benefit to couple's psychological distress when facing breast cancer. Health care providers could consider enhancing couple's CDC and coping congruence to improve their adjustment.


Subject(s)
Breast Neoplasms , Psychological Distress , Humans , Female , Adaptation, Psychological , Breast Neoplasms/psychology , Spouses/psychology , Coping Skills
2.
J Psychosoc Oncol ; : 1-18, 2024 Jan 19.
Article in English | MEDLINE | ID: mdl-38240291

ABSTRACT

OBJECTIVE: Couples' joint coping is important in managing the impact of breast cancer. However, measures assessing couples' communication as a way of coping are insufficient. This study aimed to generate a self-report valid and reliable measure of couples' coping with a particular focus on communication. METHOD: We used baseline data of 343 couple dyads who participated in a randomized clinical trial targeting marital communication. Women were diagnosed with early-stage breast cancer in the past eight months; couples were married or in an intimate relationship for at least six months, could read and write English, and lived within 100 miles of the study center. An expert panel selected items with conceptual fit from the Mutuality and Interpersonal Sensitivity Scale (MIS) that was originally designed to evaluate marital communication about breast cancer. RESULTS: Exploratory and confirmatory factor analyses supported a 12-item measurement model with four factors: Keeping the communication open with each other about breast cancer (4 items), Sharing a positive outlook on breast cancer (2 items), Avoiding discussion of negative thoughts and feelings about breast cancer (3 items), and Spending sufficient time together talking about breast cancer (3 items). Reliability ranged from 0.76 to 0.87 for women and 0.70 to 0.83 for spouses. CONCLUSION: This new measure has potential application in clinical practice and future research to assess couple's joint coping efforts especially through communication.

3.
Nurs Res ; 72(5): E172-E179, 2023.
Article in English | MEDLINE | ID: mdl-37625187

ABSTRACT

BACKGROUND: Despite the effect of maternal breast cancer on many children, there is no valid or reliable quantitative measure of the concern that children attribute to their mothers' disease, which constrains both science and clinical practice. OBJECTIVES: This study aimed to develop and psychometrically evaluate the initial measures of child-reported, illness-related concerns associated with maternal cancer. METHODS: The study was conducted in three phases: scoping review, item extraction from a battery of items obtained from school-aged children about general issues related to their mothers' breast cancer, and testing of the three proposed structural models of these extracted items using confirmatory factor analysis. The scoping review yielded five categories of illness-related concerns: altered family routines, uncertainty, concerns about illness contagion, maternal death, and maternal well-being. To reflect these five categories, 18 items were extracted from a 93-item questionnaire completed by 202 school-aged children regarding their mothers' breast cancer. Next, three structural models were hypothesized to assess the construct validity of illness-related concerns: five-, three-, and one-factor models. Confirmatory factor analysis was used to test and compare the models. RESULTS: The five-factor model best fit the data, and each factor showed adequate internal consistency reliability. These findings align with the a priori five-factor model informed by the scoping review. CONCLUSION: The results provide initial evidence of the construct validity of the 18-item Children's Illness-Related Concerns Scale, which can be used to assess children's concerns and inform future intervention studies.


Subject(s)
Breast Neoplasms , Mothers , Female , Humans , Child , Psychometrics/methods , Reproducibility of Results , Surveys and Questionnaires
4.
J Psychosoc Oncol ; 41(1): 104-122, 2023.
Article in English | MEDLINE | ID: mdl-35587607

ABSTRACT

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.


Subject(s)
Mothers , Neoplasms , Female , Humans , Mothers/psychology , Parenting/psychology , Feasibility Studies , Hispanic or Latino , Neoplasms/therapy , Education, Nonprofessional , Telephone
5.
Children (Basel) ; 9(2)2022 Feb 16.
Article in English | MEDLINE | ID: mdl-35204987

ABSTRACT

BACKGROUND: The dominant tradition in studying parents' responses to their child's hospitalization in the pediatric intensive care unit (PICU) is to focus on their immediate environment and their children's well-being. This view of the parents' experiences fails to describe the broader set of concurrent challenges beyond the PICU that parents carry with them into the PICU. OBJECTIVES: This study describes (a) parents' reactions to juggling their two worlds, home and hospital, when their child is hospitalized in the PICU, and (b) the impact of this juggling on their lives. METHODS: Fifteen parents whose child was admitted into a PICU at a tertiary medical center for children in the Pacific Northwest participated in semi-structured interviews. Data analysis and interpretation were guided by grounded theory. RESULTS: The theory grounded in the data and integrated with the core category was Fraying at the Seams while Balancing between Two Worlds, Home and Hospital. Analyses revealed two categories: Bringing My Life to a Halt and Throwing Our Whole Life Off. CONCLUSION: Even though parents were physically and emotionally present with their child in the PICU, they felt frayed as they concurrently struggled with their physical distance from other children at home. This strain of living in two worlds caused feelings of inadequacy to fulfill their parental role.

6.
Support Care Cancer ; 30(1): 793-803, 2022 Jan.
Article in English | MEDLINE | ID: mdl-34386885

ABSTRACT

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.


Subject(s)
Breast Neoplasms , Spouses , Breast Neoplasms/therapy , Caregivers , Communication , Counseling , Female , Humans , Telephone
7.
Nurs Forum ; 56(3): 703-709, 2021 Jul.
Article in English | MEDLINE | ID: mdl-33665836

ABSTRACT

OBJECTIVES: The concept analysis of environmental enrichment aims to clarify the meaning of the term contributing to a shared understanding of its use in healthcare and future research studies. Environmental enrichment has implications in health promotion in children's development and healthy aging in the general population. METHODS: A literature search using PubMed and CINAHL databases on environmental enrichment was conducted to identify the uses of the term from various disciplines. The keywords are "environmental enrichment", "socialization", "physical activity", "cognitive stimulation", and "experience-dependent". Human studies from 2000 to 2020 were included in the search. RESULTS: Availability of green spaces, neighborhood safety, walkability to community centers, and accessibility of community resources are antecedents of environmental enrichment. Defining attributes are positive stimulation, interpersonal interaction, and physical engagement. The consequences of environmental enrichment are improved cognitive functioning in children, decline in memory impairment, and reduced risk of developing dementia in the elderly. CONCLUSION: Engaging and counseling patients, family members, and the community in adverse effects of a deprived environment and the benefits of an enriched environment is a vital tenet of the nursing discipline. Understanding the optimum amount of positive stimulation, interpersonal interaction duration, and frequency are needed in future research.


Subject(s)
Delivery of Health Care , Exercise , Humans , Interpersonal Relations
8.
J Assoc Nurses AIDS Care ; 32(2): 174-187, 2021.
Article in English | MEDLINE | ID: mdl-33449581

ABSTRACT

ABSTRACT: As persons living with HIV live longer, it is important to understand the symptoms experienced by menopausal women living with HIV (WLWH). This study used best-worst scaling (BWS) to determine the menopausal symptoms that are most burdensome for Cambodian WLWH. Participants were asked to rate a list of menopausal symptoms in terms of the most and least burdensome in their lives via BWS. The final analysis included 183 participants, 67 of whom were premenopausal, 47 perimenopausal, and 69 postmenopausal women. Physical and mental exhaustion (mean best-worst score = 319) was rated as the most burdensome symptom, and hot flushes and sweating were the least burdensome (mean best-worst score = -181). The BWS provides information on priorities for the distribution of health care resources. Understanding how Cambodian WLWH prioritize burdensome menopausal symptoms is crucial for choosing the most contextually sensitive method to provide health care services and interventions.


Subject(s)
HIV Infections/psychology , Hot Flashes/epidemiology , Menopause/physiology , Adult , Asian People , Cambodia/epidemiology , Female , HIV Infections/drug therapy , Humans , Irritable Mood/physiology , Middle Aged , Surveys and Questionnaires , Sweating , Symptom Assessment
9.
Support Care Cancer ; 29(8): 4389-4394, 2021 Aug.
Article in English | MEDLINE | ID: mdl-33438051

ABSTRACT

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 .


Subject(s)
Caregivers/psychology , Counseling/standards , Spouses/psychology , Female , Humans , Male , Middle Aged
10.
Transl Behav Med ; 11(1): 153-160, 2021 02 11.
Article in English | MEDLINE | ID: mdl-31886505

ABSTRACT

One-on-one peer coaching/support programs hold promise in promoting healthy outcomes among women at risk for and surviving with breast cancer, with the potential to bridge gaps in "whole person care." Although popularly cited for their benefits, emerging evidence is mixed and suggests that peer support program impacts may be attenuated by individual- and community-specific factors. We evaluated a national not-for-profit breast cancer organization's peer support program outcomes (2015-2018) serving women from predominantly Jewish backgrounds to examine program engagement, facilitation, and satisfaction. Of the N = 392 women sampled, 37% utilized the peer support program: the majority were referred by a family member/friend (40%) or had connected with the program online (34%). Logistic regression modeling revealed that mothers (odds ratio [OR] = 1.82; 95% confidence interval [CI] = 1.04 to 3.19), women at increased genetic risk for breast cancer (OR = 2.07; 95% CI = 1.08 to 3.94), and those who connected with the organization through a family member/friend (OR = 1.97; 95% CI = 1.23 to 3.15) were significantly more likely to utilize peer support (all p's < .05). Satisfaction with peer support was high and reliably measured (M = 42.8 out of possible 50; α = .95). These findings emphasize opportunities for peer support programs to serve a range of needs among breast cancer previvors and survivors and increase health care's organizational capacity to reach and impact this community through trusted and well-trained lay coaches.


Subject(s)
Breast Neoplasms , Mentoring , Breast Neoplasms/prevention & control , Female , Humans , Mothers , Self Care , Survivors
11.
Am J Hosp Palliat Care ; 38(8): 920-926, 2021 Aug.
Article in English | MEDLINE | ID: mdl-33107327

ABSTRACT

BACKGROUND: Parents with advanced cancer struggle initiating conversations with their children about the cancer. When parents do not have the tools to talk with their children, they silently watch their children attempt to navigate their illness but can only wonder but not know what their children are thinking. The objective of the current study is to describe, from parents living with advanced cancer, the worries and concerns parents wonder their child holds, but has not spoken, about the parent's cancer. METHODS: Twenty-seven parents with incurable cancer enrolled in a 5 session telephone intervention pilot study during which they were asked, "What questions do you have about what your child is thinking or feeling about the cancer?" Data were transcribed and inductively coded using content analysis methods adapted from grounded theory. RESULTS: Analysis yielded 14 categories of parent concerns organized into 6 larger conceptual domains: Being Concerned and Scared about My Cancer; Worrying about Me; Changing How We Talk and Live Day-to-Day; Not Knowing What Will Happen; Having Unanswered Questions about My Cancer; and Understanding My Disease Is Terminal. CONCLUSIONS: Study results add to our understanding of the magnitude of the emotional burden parents with advanced cancer carry as they struggle to balance their diagnosis and treatment and their life as parents.


Subject(s)
Neoplasms , Parents , Child , Communication , Humans , Parent-Child Relations , Pilot Projects
12.
J Psychosoc Oncol ; 39(1): 1-16, 2021.
Article in English | MEDLINE | ID: mdl-32367786

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 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.


Subject(s)
Neoplasms/diagnosis , Parenting , Parents/education , Psychotherapy, Group , Adolescent , Adult , Child , Child, Preschool , Feasibility Studies , Female , Humans , Male , Middle Aged , Parents/psychology , Pilot Projects , Program Evaluation
13.
Eur J Cancer Care (Engl) ; 29(5): e13259, 2020 Sep.
Article in English | MEDLINE | ID: mdl-32424878

ABSTRACT

OBJECTIVE: We investigated the effects of mindfulness-based cognitive therapy on insomnia (MBCT-I) in breast cancer survivors. METHODS: In total, 136 participants were allocated randomly to a MBCT-I group or a waitlist control (WLC) group. Indicators of insomnia and mindfulness were evaluated using the Insomnia Severity Index, actigraphy and the Five Facet Mindfulness Questionnaire. Data were collected at baseline (T1), post-intervention (T2), 3-month follow-up (T3) and 6-month follow-up (T4) time points. RESULTS: Insomnia severity decreased significantly in the MBCT-I group, compared with the WLC group, at T2, T3 and T4 (all p < .001). We found that 59.6% of the MBCT-I group with moderate and severe insomnia improved to no insomnia and subclinical insomnia at T4 relative to T1, accounting for 7.9% and 55.3%, respectively. Compared with the WLC group, the MBCT-I group improved on actigraphy measures of sleep; they exhibited a pattern of decreased sleep onset latency and waking after sleep onset, as well as increased total sleep time and sleep efficiency. Mindfulness also increased more in the MBCT-I group than in the WLC group at T2, T3 and T4 (all p < .001). CONCLUSIONS: MBCT-I may be an efficacious non-pharmacologic intervention to improve sleep quality in breast cancer survivors.


Subject(s)
Breast Neoplasms , Cancer Survivors , Cognitive Behavioral Therapy , Mindfulness , Sleep Initiation and Maintenance Disorders , Breast Neoplasms/therapy , Female , Humans , Sleep Initiation and Maintenance Disorders/therapy , Treatment Outcome
14.
Palliat Support Care ; 18(3): 339-345, 2020 06.
Article in English | MEDLINE | ID: mdl-32148212

ABSTRACT

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.


Subject(s)
Neoplasms/complications , Parent-Child Relations , Parenting/psychology , Teaching/standards , Adult , Female , Humans , Male , Middle Aged , Neoplasms/psychology , Neoplasms/therapy , Parents/psychology , Teaching/statistics & numerical data
15.
J Pediatr Nurs ; 51: 8-14, 2020.
Article in English | MEDLINE | ID: mdl-31835065

ABSTRACT

PURPOSE: Post-traumatic stress disorder rates in parents following PICU admission ranged between 12.2% and 42%. Despite the numbers affected and the magnitude of parents' distress, little is known about parents' experience in the PICU that could be a source of their stress. This study sought to describe parents' experience of the PICU during their child's stay, including their perceived stressors. DESIGN AND METHODS: Single occasion interviews with 15 parents of children with complex medical conditions admitted for 48 or more hours to a tertiary PICU in the USA. Interviews were inductively coded using methods adapted from Grounded Theory. RESULTS: Riding a Roller Coaster was the core construct that explained parents' experiences. Analyses revealed four domains: Being in a New Stressful World, My Brain Is Burning All the Time, Going through a Hurricane of Emotions, and Being in a Safe Place with Great People. CONCLUSION: Despite outstanding medical services, parents were traumatized by seeing their child in a life-threatening situation and were buffeted by a tidal wave of emotions. Parents lived in a constant state of uncertainty, helplessness and fear, not knowing if their child would survive or have devastating outcomes or permanent disabilities. PRACTICE IMPLICATIONS: Supporting parents during their emotional roller coaster ride requires targeted services throughout the child's illness trajectory, including ways to interpret what is happening in the PICU, helping parents self-regulate their stress, and offering services around parents' fears, concerns, and strategies to manage their uncertainty and feelings of helplessness.


Subject(s)
Intensive Care Units, Pediatric , Parents/psychology , Stress Disorders, Post-Traumatic , Stress, Psychological , Adult , Child , Child, Preschool , Emotions , Family , Fear , Female , Hospitalization , Humans , Male , Qualitative Research
16.
Cancer Nurs ; 43(6): 514-520, 2020.
Article in English | MEDLINE | ID: mdl-31833918

ABSTRACT

BACKGROUND: Maternal breast cancer has a significant impact on the well-being of school-aged children, but we know very little about the concerns these children attribute to their mother's illness. OBJECTIVE: The aim of this study was to describe child-reported illness-related concerns experienced in the initial 6 months of their mother's diagnosis and to identify any differences by age and gender of the child. METHODS: Data were obtained from 140 school-aged children (7-12 years) within 6 months of their mother diagnosis with stage 0 to III breast cancer. Children's written responses to an open-ended question were analyzed: "Think about a situation that has bothered you during the last month that had to do with your mom's breast cancer." Inductive content analysis was used to analyze the data using methods adapted from grounded theory. Trustworthiness of results was protected by coding to consensus, formal peer debriefing, and maintaining an audit trail. RESULTS: "Losing Her", the core construct, was identified and organized the children's concerns in 4 domains: (1) her being away from me, (2) worrying about her, (3) seeing my mother be different, and (4) changing how things work. CONCLUSION: All children reported illness-related concerns about which they were bothered. Even seemingly short-term treatment-related absences from the child were interpreted as difficult. IMPLICATION FOR PRACTICE: Findings from the current study add to nurses' awareness and knowledge about the concerns of school-aged children during their mother's initial treatment of breast cancer. Nurses are in a key position to provide services directly to the child or through the mother.


Subject(s)
Attitude to Health , Breast Neoplasms/psychology , Child Behavior/psychology , Mother-Child Relations/psychology , Mothers/psychology , Adult , Age Factors , Child , Female , Humans , Male , Sex Factors
17.
J Palliat Med ; 23(2): 211-219, 2020 02.
Article in English | MEDLINE | ID: mdl-31613703

ABSTRACT

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.


Subject(s)
Neoplasms , Parenting , Child , Feasibility Studies , Humans , Palliative Care , Parent-Child Relations , Parents
18.
Am J Hosp Palliat Care ; 36(3): 207-215, 2019 Mar.
Article in English | MEDLINE | ID: mdl-30304938

ABSTRACT

BACKGROUND: Family caregivers encounter many barriers to managing patients' pain in the home hospice setting. However, there are limited clinically applicable resources for hospice providers to help family caregivers identify and address these barriers. AIM: To develop a pain management manual for hospice providers to support family caregivers and conduct a preliminary providers' evaluation of the manual. DESIGN AND PARTICIPANTS: A pain management manual was developed and structured into 3 parts: (1) 5 common pain management case scenarios based on a secondary data analysis of a hospice clinical trial; (2) a list of suggested assessment questions and strategies for each case scenario was developed based on a caregiver framework; and (3) pain educational material was included from established clinical guidelines. The manual was vetted by 5 experts and then was evaluated by interviewing 25 hospice providers. Interview data were analyzed using thematic analysis. RESULTS: The hospice providers found that the manual could potentially serve as a reference in their practice and be a source for their continuing education. They suggested enhancing the clarity of the case scenarios and adding additional strategies to the manual. Moreover, they suggested expanding the paper-based version and developing a web-based platform to deliver the content would maximize its utility. CONCLUSIONS: The manual has the potential to be integrated into routine hospice care to improve the quality of pain management.


Subject(s)
Caregivers/education , Hospice Care/organization & administration , Manuals as Topic , Pain Management/methods , Pain Measurement/methods , Adult , Aged , Female , Health Knowledge, Attitudes, Practice , Hospice Care/standards , Humans , Male , Middle Aged , Pain Management/standards , Pain Measurement/standards , Patient Preference
19.
Psychooncology ; 28(2): 430-438, 2019 02.
Article in English | MEDLINE | ID: mdl-30549145

ABSTRACT

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.


Subject(s)
Anxiety/therapy , Breast Neoplasms/psychology , Caregivers/psychology , Depression/therapy , Psychotherapy/methods , Self Care , Self Efficacy , Social Support , Spouses/psychology , Adult , Aged , Female , Humans , Male , Middle Aged , Treatment Outcome
20.
BMC Cancer ; 18(1): 1140, 2018 Nov 20.
Article in English | MEDLINE | ID: mdl-30453906

ABSTRACT

BACKGROUND: African American adults experience a disproportionate burden and increased mortality for most solid tumor cancers and their adolescent children are negatively impacted by the illness experience. The purpose of this randomized clinical trial is to evaluate the efficacy of a culturally sensitive family-based intervention program developed for African American families coping with solid tumor parental cancer using an intention-to-treat approach. Primary outcome is adolescent depressive symptoms at end of treatment. METHODS: A sample of 172 African American families will be enrolled from two diverse oncology centers (Helen Graham Cancer Center in Newark, DE, and Kimmel Cancer Center in Philadelphia, PA). Eligible families will be randomized either to a 5-session intervention Families Fighting Cancer Together (FFCT) or a 5-session parent-only psycho-educational (PED) program. Assessments will occur at weeks 0 (baseline), 8 (end-of-treatment), 24, and 52. DISCUSSION: Treatments to help African American adolescents cope with the impact of parental cancer are scarce and urgently needed. If successful, this proposed research will change the nature of intervention support options available to African Americans, who are overrepresented and underserved by existing services or programs. TRIAL REGISTRATION: This project is registered with ClinicalTrials.gov (Protocol #: NCT03567330).


Subject(s)
Black or African American/psychology , Neoplasms/psychology , Neoplasms/therapy , Parents/psychology , Research Design , Adaptation, Psychological , Adolescent , Adult , Child , Family , Family Health , Female , Humans , Male , Stress, Psychological/psychology , Surveys and Questionnaires
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