Experiences of Couples Caring for a Child Born with Cleft Lip and/or Palate: Impact of the Timing of Diagnosis.

Raising a child born with cleft lip and/or palate (CL/P) can be challenging for parents. Few researchers have examined how having a child born with CL/P impacts couples. The purpose of this descriptive qualitative study was to examine how a child's CL/P diagnosis affects couples' relational adjustment and coping. We conducted interviews with 17 couples (10 prenatal and seven postnatal) caring for children born with CL/P. After conducting thematic content analysis, six overarching themes emerged: (a) relationship growth, (b) challenges, (c) roles and responsibilities, (d) sources of support, (e) talking about cleft, and (f) lessons learned. Findings suggest that couples should be routinely assessed for psychosocial issues and prevention programs should be tailored to preexisting stressors and timing of the diagnosis.

Fathers of children born with cleft lip and palate: Impact of the timing of diagnosis.

INTRODUCTION: Cleft lip and/or palate (CL/P) affects not just the child born with the condition but also the child's parents. Prior research has been primarily cross-sectional, quantitative, and focused on mothers' emotional, social, and care experiences. Fathers' experiences have been neglected despite the important role fathers have in their child's well-being and development. The purpose of this study was to examine how the timing of a child's diagnosis (prenatal vs. postnatal) affects how fathers cope and adapt. METHOD: We conducted a descriptive qualitative study with a convenience sample of 17 fathers and used thematic content analysis to code the interviews. The sample included 10 fathers who received a prenatal diagnosis and 7 who received a postnatal diagnosis. RESULTS: The following 4 major themes emerged: (a) first hearing the diagnosis, (b) taking care of a baby with cleft, (c) future concerns, and (d) reflections. Course of treatment, feeding, and social stigma were reported as major sources of stress for all fathers. DISCUSSION: All fathers should be routinely assessed by CL/P treatment teams and included in support services. Some fathers whose babies were diagnosed at birth experienced self-blame, suggesting the importance of screening this group of fathers for distress at birth. Findings underscore the importance of family centered approaches to care that include both mothers and fathers in treatment planning, interventions, and future research. (PsycINFO Database Record

Strategies Used by Foreign-Born Family Therapists to Connect Across Cultural Differences: A Thematic Analysis.

With the growing diversity in the United States among both clinicians and clients, many therapeutic encounters are cross-cultural, requiring providers to connect across cultural differences. Foreign-born therapists have many areas of differences to work through. Thus, exploring how foreign-born family therapists in the United States connect to their clients can uncover helpful strategies that all therapists can use to establish stronger cross-cultural therapeutic connections. A thematic analysis was conducted to understand strategies 13 foreign-born therapists used during therapeutic encounters. Four themes were identified: making therapy a human-to-human connection, dealing with stereotypes, what really matters, and flexibility. Findings suggest that developing a deep therapeutic connection using emotional attunement and human-to-human engagement is crucial for successful cross-cultural therapy. Clinical and training implications are provided.

African American Patients' Psychosocial Support Needs and Barriers to Treatment: Patient Needs Assessment.

This study assessed adult patient's psychosocial support needs and treatment barriers in an urban diverse cancer center. A needs assessment was conducted with a convenience sample of adult oncology patients (n = 113; 71.7 % African American). Most patients were parenting school-age children and worried about them (96 %); 86.7 % would attend a family support program. Among patients who were married or partnered (68 %), 63.7 % were concerned about communication, coping, and emotional support; 53.9 % would attend a couple support program. Patients identified similar treatment barriers: transportation, babysitting for younger children, convenience of time/place, and refreshments. Findings suggest that behavioral health care providers should be available to screen cancer patients and improve access to appropriate psychosocial oncology support programs.

A snapshot of patients' perceptions of oncology providers' cultural competence.

In this paper, we describe an anonymous cross-sectional survey with a sample of 100 racially diverse adult oncology patients using a newly developed patient-reported measure of providers' cultural competence, the Physicians' Cultural Competence for Patient Satisfaction Scale (PCCPS) [1, 2], which was developed using a US midwestern sample of primary care patients. Our primary aims were to examine the reliability of the PCCPS in a more racially diverse urban oncology clinical setting and to identify salient domains of oncology provider cultural competence based on patient-reported satisfaction with direct clinical encounters. Results suggest that patient-reported satisfaction was significantly associated with one of the four domains measured by the PCCPS, physician's patient-centered cultural competence (r = 0.40, p = 0.01), and female patients were more satisfied (t (91) = 5.23, p = 0.02). The PCCPS demonstrated good reliability in an urban diverse cancer patient population. Results help to inform the development of clinical tools that can improve oncology providers' cultural competency.

A culturally adapted family intervention for African American families coping with parental cancer: outcomes of a pilot study.

OBJECTIVES: The primary objective of this 2-year pilot study was to evaluate the effectiveness of a culturally adapted family intervention in improving family communication among African American parents coping with cancer and their school-age children. A secondary objective was to determine its impact on other symptoms of psychosocial distress (depression and anxiety). The third objective was to assess for acceptability and feasibility. METHODS: Using a two-arm pre-intervention and post-intervention prospective design, 12 African American families received five bi-monthly sessions of either a culturally adapted family intervention (n=7 families) or psycho-education treatment (n=5 families). Parents and their children completed pre-intervention and post-intervention questionnaires assessing perceptions of family communication, quality of their relationship, and symptoms of depression. School-age children additionally completed a questionnaire assessing their levels of anxiety. Consumer satisfaction was also evaluated at post-intervention. RESULTS: Parents and school-age children who completed the culturally adapted family intervention reported significantly better communication with each other and were more satisfied compared with the psycho-education control group. No changes were noted in symptoms of anxiety or depression. The culturally adapted family intervention was acceptable based on our findings, families' feedback, and rates of retention. Feasibility is uncertain because our oncology clinic approach to recruitment was slower than expected. CONCLUSIONS: Providing culturally adapted family intervention programs to African American families who are coping with parental cancer may result in improved family communication. This pilot study serves as the first step in the development of culturally adapted family intervention programs to help African American families cope with parental cancer.

Female adoptees' experiences balancing relationships with biological and adoptive mothers post-reunification.

Using a feminist postmodern perspective and the sensitizing concept of split loyalties from Contextual Theory, the primary purpose of this qualitative study was to develop a better understanding of how adult female adoptees from closed adoptions negotiate relationships with their adoptive and biological mothers post-reunion. We conducted semi-structured individual interviews with nine adult female adoptees, ages 28-52, who were adopted prior to the age of two. Six were Caucasian, three were African American, and the average age at reunion was 29. Grounded theory techniques were used to code the qualitative data, in particular the constant comparative method of analysis. Four main categories emerged: (a) Negotiating Mother-Daughter Relationships, (b) Relating to Mothers Equitably, (c) Loyalty, and (d) Adoptees' Emotional Needs. Our findings suggest the adoptive mother-daughter relationship has a salient effect on adoptees' relationships with biological mothers post-reunion. Loyalty to the adoptive mother seems to influence the evolving relationship and closeness displayed toward the birth mother. Adult female adoptees from closed adoptions described struggling with managing their two mother-daughter relationships and need clinical help addressing their own emotional needs.

African American parents' experiences navigating breast cancer while caring for their children.

African American parents who are navigating breast cancer while parenting their school-age children are an understudied population. We used family systems and sociocultural theories to conduct three focus groups with a total sample of 9 African American parents to understand how they cared for their school-age children (ages 11 to 18) while coping with the diagnosis and treatment of breast cancer. Our content analysis of these focus groups yielded themes that described a variety of ways they protected their children from the emotional consequences of breast cancer. Seven primary themes emerged: (a) increased desire to protect their children, (b) parental concerns for children's coping, (c) openness and transparency with children, (d) reliance on children for support, (e) calibration of their own responses, (f) use of the illness experience as a teachable moment for children, and (g) reliance on others for parenting support. Clinicians and researchers can improve their care by developing culturally sensitive family intervention programs that promote family resilience.

Lessons learned in developing a culturally adapted intervention for African-American families coping with parental cancer.

Prior clinical research supports the effectiveness of cancer support groups for cancer patients and their families, yet African-American families continue to be underrepresented in cancer support groups and in cancer clinical research studies. In order to fill this gap, we developed and evaluated a culturally adapted family support group for African-American families coping with parental cancer. We encountered unexpected challenges in overcoming barriers to recruitment, partnering with oncology providers, and building trust with the African-American community and African-American families coping with parental cancer. We describe actions taken during the two phases of this study and lessons learned along the way about recruiting and engaging African-American families in cancer support group studies, partnering with oncology providers, networking with the African-American community, and the importance of demonstrating cultural sensitivity to overcome the understandable historical legacy of mistrust.

It's a privilege to smile: impact of cleft lip palate on families.

In this article we describe prior cross-sectional and longitudinal research conducted with children who were born with cleft lip and/or palate and their families in the United States and internationally. The findings and clinical implications from different times and cultures are synthesized using the Biopsychosocial Model. Our primary aim is to summarize the attachment styles, cognitive, psychological and social functioning, self-concept, neurological functioning, and speech difficulties prevalent among individuals who are born with cleft lip/palate at different developmental stages (e.g., infancy, toddler, childhood, adolescence). Additionally, bystander reactions to the speech and appearance of individuals coping with cleft lip and/or palate and its effects on the family are described. Finally we examine the diversity of samples from prior clinical research and provide clinical recommendations for more collaborative family-based practice among medical and mental health providers treating families coping with cleft lip and/or palate.

Culturally sensitive collaborative care models: exploration of a community-based health center.

This qualitative focus group (FG) study describes an interdisciplinary health care team's collaboration while serving an underprivileged patient population. Collaboration was explored with diverse personnel from support staff to upper administration at a nurse-managed community-based health center in the northeastern region of the United States. Biopsychosocial theory and a feminist ecological framework were used to explore how multiple contextual variables of patients and their providers influence the collaborative process of 39 staff. Content analysis revealed facilitators and barriers to collaboration. Providers' perceptions of care revealed a patient-centered approach with serendipitous family and community involvement. Recognized challenges included the need to improve family and community involvement, develop ongoing cultural sensitivity training for staff at the center, and hire more providers who match the ethnic and racial makeup of the center's clientele.

'We are survivors too': African-American youths' experiences of coping with parental breast cancer.

OBJECTIVE: To explore how African-American youth cope with the diagnosis and treatment of parental breast cancer, and to identify culturally sensitive ways to recruit and sustain participation of this vulnerable population in intervention programs. METHODS: Three qualitative focus groups which were part of a larger study were conducted with 12 African-American youth between the ages of 11 and 18, currently coping with parental breast cancer from the Northeastern part of the United States. Interviews were audio-taped and transcribed verbatim, and analyzed using content analysis. RESULTS: African-American youth described fear and uncertainty about the mortality of their parent, their unpredictable future, and discomfort in negotiating breast cancer's relationship with the entire family. Four primary themes emerged which were coping with cancer, it affects us too, changes in family functioning, and growth through pain. African-American youth described feeling overlooked by their families and oncology staff treating their parents, often being in the role of protecting their parents physically and emotionally. CONCLUSIONS: This study suggests that clinicians can improve the care of African-American breast cancer patients and their adolescent children by being more family-centered. Adolescents need more developmentally appropriate preparation for the family changes likely to occur when a parent is diagnosed and treated for breast cancer. Developing a support group comprised of other youth coping with parental breast cancer from diagnosis throughout treatment was described as a preferred intervention to promote a shared understanding in order to overcome feelings of isolation, worry, and fear.

Providers' perspectives on collaboration.

OBJECTIVE: Changes in models of health care are required to better meet the needs of diverse, underserved patient populations. Collaboration among providers is one way to promote accessible, comprehensive and continuous care in healthcare organizations. This paper describes the quantitative findings from two time points that examined providers' views of collaboration among a sample of diverse personnel (e.g. clinical nurses, social workers, dental providers, mental health providers, clerical staff, medical assistants, public health staff, and administrators) within a federally qualified nurse managed health care centre in the United States. METHODS: The quantitative arm of a mixed-method study is presented in this paper. Two instruments, the Collaboration and Satisfaction About Care Decisions Scale and the University of the West of England Interprofessional Questionnaire (comprised of 4 subscales-Communication and Teamwork Scale, Interprofessional Learning Scale, Interprofessional Interaction Scale, and Interprofessional Relationships Scale) were administered to providers at baseline and three to eight months following six same discipline focus group discussions on collaboration, in order to evaluate whether participating in the focus group discussions changed providers' views of collaboration. A summary of the focus group data which were published elsewhere is additionally summarized to help provide insight to the quantitative findings. Thirty-nine staff participated. RESULTS: Paired t-tests revealed that only one scale out of the five, Collaboration and Satisfaction About Care Decisions Scale (33.97 at time one and 37.45 at time two), significantly and positively changed after the focus group discussion (p=0.046). Providers' views on collaboration ranged from positive to moderate views of collaboration; most measures revealed a non-significant improvement after the focus group discussions. Staff with some graduate school reported the greatest satisfaction with decisions for the patient, and those with high school reported the lowest satisfaction with decisions for the patient. Respondents with a graduate degree had the most positive views of interprofessional relationships, whilst those with either a high school degree or bachelor's degree had the most negative views of interprofessional relationships. ANOVAs by professional role revealed the least positive views of collaboration for provider groups with lower levels of education, with upper administration reporting the most positive views on collaboration. CONCLUSION: Although the discussion generated by the focus groups was expected to facilitate communication, and research has suggested that communication between providers facilitates collaboration, only one subscale evaluating providers' views of collaboration positively and significantly changed after the focus group discussion. The wide range of views on collaboration suggests there are diverse perspectives on collaboration among the staff based on professional roles and levels of education, with upper administration and those with higher levels of education reporting the most positive views of collaboration and staff with lower levels of education reporting more negative views of collaboration. A major limitation of this study was a low time two return among support staff, comprised of primarily African American women. Due to their marginalized professional and racial status, future research needs to explore the perspectives of this important and often overlooked group of staff.

"They paid no mind to my state of mind": African American breast cancer patients' experiences of cancer care delivery.

This qualitative study describes experiences of cancer care delivery for nine African-American breast cancer patients. Three focus groups captured participants' experiences with the diagnosis and treatment of breast cancer and parenting their children. Spontaneous accounts describing their interactions with oncology staff were reported by all breast cancer patients. Content analysis revealed five themes: interaction with physicians, power and authority of physicians, collaboration between physicians and mental health professionals, navigating the system, and involvement of the family in the treatment process. These themes may help in developing culturally sensitive training programs for oncology providers to improve the quality of cancer care.

Collaborative approaches to increasing family support for HIV positive youth.

Family therapists working in medical contexts often struggle to find a common language for communication with medical staff about the importance of family support. HIV positive youth are a group who have particular need for family support to help improve medication adherence, promote more open and positive communication, and decrease substance use and risk behaviors. In this paper, the authors retrospectively examined the levels of family support in a sample of 50 North American urban minority youth coping with HIV in an HIV/AIDs pediatric clinic from 2003 to 2007 at 2 time points (pre- and postdiagnosis) and began developing a clinician-rated family support tool. The authors highlight the use of a common clinician-rated family support tool for medical and mental health staff to discuss patients and their families. Results suggest that the family support youth were receiving fell between mixed and unsupportive levels both at pre- and postdiagnosis. Through the use of a case example the authors elaborate on how this family support tool aided in building a collaborative relationship with a focus on garnering family support for youth coping with the diagnosis of HIV.