To describe children's worries when their mothers are newly diagnosed with early-stage breast... more To describe children's worries when their mothers are newly diagnosed with early-stage breast cancer. Descriptive, qualitative study. Private family homes. Case intensive interviews with 16 children who ranged in age from 11-18 years at the time that interviews were conducted and who had been 8-12 years of age when their mothers were diagnosed with early-stage breast cancer. Semistructured interviews with the children were audiorecorded, transcribed, and inductively coded into categories of distinct worries about their mothers' breast cancer. Children's descriptions of their worries and confusion resulting from their mothers' breast cancer diagnoses. The children voiced nine categories of worry during the interviews: worrying that the mother was going to die; feeling confused; worrying that something bad would happen; worrying about the family and others; worrying when the mother did not look good; worrying that their mothers would change; wondering if the family wou...
OBJECTIVES Examine the relationship between supply of care provided by dental therapists and emer... more OBJECTIVES Examine the relationship between supply of care provided by dental therapists and emergency dental consultations in Alaska Native communities. METHODS Explanatory sequential mixed-methods study using Alaska Medicaid and electronic health record (EHR) data from the Yukon-Kuskokwim Health Corporation (YKHC), and interview data from six Alaska Native communities. From the Medicaid data, we estimated community-level dental therapy treatment days and from the EHR data we identified emergency dental consultations. We calculated Spearman partial correlation coefficients and ran confounder-adjusted models for children and adults. Interview data collected from YKHC providers (N=16) and community members (N=125) were content analysed. The quantitative and qualitative data were integrated through connecting. Results were visualized with a joint display. RESULTS There were significant negative correlations between dental therapy treatment days and emergency dental consultations for c...
PURPOSE/OBJECTIVES To describe mothers' reported methods of interacting with the mothers'... more PURPOSE/OBJECTIVES To describe mothers' reported methods of interacting with the mothers' school-age children about their breast cancer. DESIGN Qualitative. SETTING/SAMPLE 19 mothers newly diagnosed with breast cancer. Mothers received treatment for their illness in the Pacific Northwest. Mothers had at least one child between 7 and 12 years old at the time of diagnosis. METHODS Case-intensive, in-home, semistructured interviews were audiotaped, transcribed, and inductively coded into four conceptual domains and 16 categories of behavioral strategies used by the mothers to interact with their children about the breast cancer. MAIN RESEARCH VARIABLES Behavioral strategies used by mothers when interacting with the children about the breast cancer and when providing children with support. FINDINGS Mothers used a number of methods to bring children into the mothers' breast cancer experience. The conceptual domains included talking about the breast cancer, explaining treatmen...
Despite knowing the potential medical consequences of cancer treatment, little is known about how... more 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. 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. Twenty-nine adolescent survivors (12-18 years) completed a semistructured interview. Inductive coding methods adapted from grounded theory were used to analyze the data. 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. 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. 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.
Although there are significant numbers of single women with breast cancer who are rearing childre... more Although there are significant numbers of single women with breast cancer who are rearing children, there is no known study of their own or their school-aged children's adjustment to the illness. The purposes of this study are: 1) to describe the adjustment of single women to early stage breast cancer; 2) to contrast their responses to a comparable sample of married/partnered women; 3) and to document the psychosocial functioning of school-aged children when their single mother has breast cancer. Results obtained from questionnaire data from 22 single and 101 married/partnered women revealed that single women had significantly higher rates of depression; reported significantly higher numbers of illness-related pressures on their family; had a significantly higher proportion of young children scoring in the abnormal range on measures of self-worth and social acceptance; and reported lower quality in parenting their children. Interviews with single women revealed that many were bu...
Little attention has been given to the partner's long-term experience after his wife&... more Little attention has been given to the partner's long-term experience after his wife's diagnosis of breast cancer. The results of this current study highlight the opportunity for nurses to make a difference in the distress levels of patients' partners after the diagnosis of breast cancer. Long-term negative effects can be seen in partners' fears about disease recurrence and marital problems related to breast cancer.
To operationalize a professional educational counseling model for nurses that derives from the cl... more To operationalize a professional educational counseling model for nurses that derives from the client's frame of reference and adds to the client's behavioral management of the impact of cancer, including self-care skills and cognitive control. Published literature and four years of clinical experience with 84 couples in which coaching behavior was applied in home-based intervention sessions. Nurse coaching behavior includes six dimensions. Attending to the Story, Encircling the Experience, inviting the Work, Exploring Solutions, Anchoring the Skill, and Setting Up Success. Nurse coaching behavior is designed to facilitate the cognitive emotional processing of the cancer experience and to add to the patient and family member's repertoire of behavioral self-care and self-management skills. Future research is needed to evaluate the processes and outcomes of nurse coaching behavior when working with patients and family members experiencing cancer. Nurse coaching provides a ...
Purpose: Acute pain experienced during dental procedures can lead to distress, difficulty with be... more 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 pai...
Purpose (1) To test the short-term impact of Helping Us Heal (HUSH), a telephone-delivered counse... more 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.
To describe spouse caregivers’ perceived gains in their own words from participating in a fully m... more 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. 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. 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. 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. NCI-2013-01838.
The objective of this study was to test the short‐term efficacy of a brief, fully manualized mari... more 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.
Abstract Objective The purpose of this study was to examine the feasibility and short-term impact... more 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.
OBJECTIVE To describe caregivers' understanding of fluoride varnish. METHODS We administered ... more 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.
Objectives The objective of this study was to describe in the words of child-rearing parents with... more 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 categor...
Background: In 2018, >75,000 children were newly affected by the diagnosis of advanced cancer ... more 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.
OBJECTIVES Dental therapists deliver preventive and basic restorative care and have been practici... more 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.
The purpose of this study is to examine the feasibility and short-term impact of a fully manualiz... more The purpose of this study is to examine the feasibility and short-term impact of a fully manualized, telephone-delivered intervention for spouse caregivers, Taking Care of Her (TCH). A total of 12 study participants from the Pacific NW were enrolled whose wife was diagnosed with Stage III ovarian cancer within 8 months. Feasibility was confirmed by rates of recruitment and retention; the quality of delivery of the intervention by telephone; and through data obtained on program acceptability during follow up exit interviews. Outcomes from the within-group analysis revealed improvements on standardized measures of spouses' and patients' depressed mood and anxiety; marital communication about the cancer; caregivers' skills and confidence to manage the emotional toll of the illness on themselves and wives; and wives' positive appraisal of spousal support. Study results suggest that the TCH Program has the potential to positively affect both spouse caregiver and patients' adjustment to recently diagnosed advanced ovarian cancer. Telephone delivery holds promise for sustainability. A future clinical trial with a larger study sample is warranted.
Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, Feb 1, 2017
The purposes of the study were to (1) test the short-term impact of a telephone-delivered cancer ... more 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). 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. 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 th...
This study examines the experiences of 48 spouses of wives newly diagnosed with local or regional... more 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.
To describe children's worries when their mothers are newly diagnosed with early-stage breast... more To describe children's worries when their mothers are newly diagnosed with early-stage breast cancer. Descriptive, qualitative study. Private family homes. Case intensive interviews with 16 children who ranged in age from 11-18 years at the time that interviews were conducted and who had been 8-12 years of age when their mothers were diagnosed with early-stage breast cancer. Semistructured interviews with the children were audiorecorded, transcribed, and inductively coded into categories of distinct worries about their mothers' breast cancer. Children's descriptions of their worries and confusion resulting from their mothers' breast cancer diagnoses. The children voiced nine categories of worry during the interviews: worrying that the mother was going to die; feeling confused; worrying that something bad would happen; worrying about the family and others; worrying when the mother did not look good; worrying that their mothers would change; wondering if the family wou...
OBJECTIVES Examine the relationship between supply of care provided by dental therapists and emer... more OBJECTIVES Examine the relationship between supply of care provided by dental therapists and emergency dental consultations in Alaska Native communities. METHODS Explanatory sequential mixed-methods study using Alaska Medicaid and electronic health record (EHR) data from the Yukon-Kuskokwim Health Corporation (YKHC), and interview data from six Alaska Native communities. From the Medicaid data, we estimated community-level dental therapy treatment days and from the EHR data we identified emergency dental consultations. We calculated Spearman partial correlation coefficients and ran confounder-adjusted models for children and adults. Interview data collected from YKHC providers (N=16) and community members (N=125) were content analysed. The quantitative and qualitative data were integrated through connecting. Results were visualized with a joint display. RESULTS There were significant negative correlations between dental therapy treatment days and emergency dental consultations for c...
PURPOSE/OBJECTIVES To describe mothers' reported methods of interacting with the mothers'... more PURPOSE/OBJECTIVES To describe mothers' reported methods of interacting with the mothers' school-age children about their breast cancer. DESIGN Qualitative. SETTING/SAMPLE 19 mothers newly diagnosed with breast cancer. Mothers received treatment for their illness in the Pacific Northwest. Mothers had at least one child between 7 and 12 years old at the time of diagnosis. METHODS Case-intensive, in-home, semistructured interviews were audiotaped, transcribed, and inductively coded into four conceptual domains and 16 categories of behavioral strategies used by the mothers to interact with their children about the breast cancer. MAIN RESEARCH VARIABLES Behavioral strategies used by mothers when interacting with the children about the breast cancer and when providing children with support. FINDINGS Mothers used a number of methods to bring children into the mothers' breast cancer experience. The conceptual domains included talking about the breast cancer, explaining treatmen...
Despite knowing the potential medical consequences of cancer treatment, little is known about how... more 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. 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. Twenty-nine adolescent survivors (12-18 years) completed a semistructured interview. Inductive coding methods adapted from grounded theory were used to analyze the data. 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. 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. 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.
Although there are significant numbers of single women with breast cancer who are rearing childre... more Although there are significant numbers of single women with breast cancer who are rearing children, there is no known study of their own or their school-aged children's adjustment to the illness. The purposes of this study are: 1) to describe the adjustment of single women to early stage breast cancer; 2) to contrast their responses to a comparable sample of married/partnered women; 3) and to document the psychosocial functioning of school-aged children when their single mother has breast cancer. Results obtained from questionnaire data from 22 single and 101 married/partnered women revealed that single women had significantly higher rates of depression; reported significantly higher numbers of illness-related pressures on their family; had a significantly higher proportion of young children scoring in the abnormal range on measures of self-worth and social acceptance; and reported lower quality in parenting their children. Interviews with single women revealed that many were bu...
Little attention has been given to the partner's long-term experience after his wife&... more Little attention has been given to the partner's long-term experience after his wife's diagnosis of breast cancer. The results of this current study highlight the opportunity for nurses to make a difference in the distress levels of patients' partners after the diagnosis of breast cancer. Long-term negative effects can be seen in partners' fears about disease recurrence and marital problems related to breast cancer.
To operationalize a professional educational counseling model for nurses that derives from the cl... more To operationalize a professional educational counseling model for nurses that derives from the client's frame of reference and adds to the client's behavioral management of the impact of cancer, including self-care skills and cognitive control. Published literature and four years of clinical experience with 84 couples in which coaching behavior was applied in home-based intervention sessions. Nurse coaching behavior includes six dimensions. Attending to the Story, Encircling the Experience, inviting the Work, Exploring Solutions, Anchoring the Skill, and Setting Up Success. Nurse coaching behavior is designed to facilitate the cognitive emotional processing of the cancer experience and to add to the patient and family member's repertoire of behavioral self-care and self-management skills. Future research is needed to evaluate the processes and outcomes of nurse coaching behavior when working with patients and family members experiencing cancer. Nurse coaching provides a ...
Purpose: Acute pain experienced during dental procedures can lead to distress, difficulty with be... more 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 pai...
Purpose (1) To test the short-term impact of Helping Us Heal (HUSH), a telephone-delivered counse... more 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.
To describe spouse caregivers’ perceived gains in their own words from participating in a fully m... more 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. 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. 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. 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. NCI-2013-01838.
The objective of this study was to test the short‐term efficacy of a brief, fully manualized mari... more 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.
Abstract Objective The purpose of this study was to examine the feasibility and short-term impact... more 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.
OBJECTIVE To describe caregivers' understanding of fluoride varnish. METHODS We administered ... more 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.
Objectives The objective of this study was to describe in the words of child-rearing parents with... more 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 categor...
Background: In 2018, >75,000 children were newly affected by the diagnosis of advanced cancer ... more 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.
OBJECTIVES Dental therapists deliver preventive and basic restorative care and have been practici... more 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.
The purpose of this study is to examine the feasibility and short-term impact of a fully manualiz... more The purpose of this study is to examine the feasibility and short-term impact of a fully manualized, telephone-delivered intervention for spouse caregivers, Taking Care of Her (TCH). A total of 12 study participants from the Pacific NW were enrolled whose wife was diagnosed with Stage III ovarian cancer within 8 months. Feasibility was confirmed by rates of recruitment and retention; the quality of delivery of the intervention by telephone; and through data obtained on program acceptability during follow up exit interviews. Outcomes from the within-group analysis revealed improvements on standardized measures of spouses' and patients' depressed mood and anxiety; marital communication about the cancer; caregivers' skills and confidence to manage the emotional toll of the illness on themselves and wives; and wives' positive appraisal of spousal support. Study results suggest that the TCH Program has the potential to positively affect both spouse caregiver and patients' adjustment to recently diagnosed advanced ovarian cancer. Telephone delivery holds promise for sustainability. A future clinical trial with a larger study sample is warranted.
Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, Feb 1, 2017
The purposes of the study were to (1) test the short-term impact of a telephone-delivered cancer ... more 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). 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. 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 th...
This study examines the experiences of 48 spouses of wives newly diagnosed with local or regional... more 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.
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Papers by Ellen Zahlis