Psychological Impacts and Ways of Coping Reported by Spousal Caregivers of Hematopoietic Cell Transplant Recipients: A Qualitative Analysis.

Allogeneic hematopoietic cell transplantation (HCT) is a demanding treatment with well-established medical and psychosocial sequelae. Impacts on significant others are tremendous. Using an unfiltered qualitative approach, we asked spouses (n = 15) of HCT recipients to talk about their thoughts and feelings regarding the transplantation and their role as caregiver. Recordings were transcribed and independently coded to identify recurrent patterns. Caregivers mentioned both negative and positive psychological impacts of HCT, but the number of negative impacts was greater: 164 versus 34 instances. The most frequently mentioned negative psychological impacts were anxiety/worry (30 instances), fear (20 instances), feeling overloaded/overwhelmed (19 instances), and uncertainty (17 instances). Other emergent categories were roles/responsibilities (49 instances) such as parenting, work, and treatment-related tasks, and coping strategies (55 instances). The latter included both adaptive and maladaptive strategies (75% and 25%, respectively). Despite the preponderance of negatively toned thoughts and feelings, signs of adjustment emerged, with mentions of positive psychological states, such as optimism and gratitude, and adaptive coping strategies, such as active coping, use of emotional support, and self-care. Interventions intended to facilitate adaptation to the HCT experience should involve strategies to help caregivers manage symptoms of distress and promote adaptive coping.

Pilot Study of an Interprofessional Palliative Care Curriculum: Course Content and Participant-Reported Learning Gains.

CONTEXT: The National Consensus Project for Quality Palliative Care Clinical Practice Guidelines recommend that palliative care clinicians work together as interprofessional teams. We created and piloted a 9-month curriculum that focused on 3 related domains: (1) patient-centered, narrative communication skills; (2) interprofessional team practice; and (3) metrics and systems integration. The multifaceted curriculum was delivered through 16 webinars, 8 online modules, 4 in-person workshops, reflective skill practice, written reflections, and small group online discussions. OBJECTIVES: Report evaluations of the course content and skill self-assessments from 24 interprofessional palliative care clinicians. METHODS: Participants rated each learning activity and completed a retrospective pre-post test skill assessment. Learning gains were measured as the difference in the percentage of participants reporting "strong" or "highly competent" skill levels at baseline and the end of the course. Participants also provided examples of how they used the skills in practice. RESULTS: Participants achieved an average learning gain of 50% across all domains, and in each domain communication (54%), interprofessional team practice (52%), and metrics and systems integration (34%). They also gave high ratings for the curriculum content (overall mean [standard deviation] rating of 5.5 (0.7) out of 6). Examples of practice impacts included improved skills in responding to emotions, understanding the equal importance of all professions on their team and incorporating different perspectives into their practice, and learning about outcome measurement in palliative care. CONCLUSION: This curriculum demonstrated success in increasing perceived skills for interprofessional palliative care clinicians in advanced communication, team practice, and metrics and system integration.

When and Why Do Neonatal and Pediatric Critical Care Physicians Consult Palliative Care?

BACKGROUND: Parents of children admitted to neonatal and pediatric intensive care units (ICUs) are at increased risk of experiencing acute and post-traumatic stress disorder. The integration of palliative care may improve child and family outcomes, yet there remains a lack of information about indicators for specialty-level palliative care involvement in this setting. OBJECTIVE: To describe neonatal and pediatric critical care physician perspectives on indicators for when and why to involve palliative care consultants. METHODS: Semistructured interviews were conducted with 22 attending physicians from neonatal, pediatric, and cardiothoracic ICUs in a single quaternary care pediatric hospital. Transcribed interviews were analyzed using content and thematic analyses. RESULTS: We identified 2 themes related to the indicators for involving palliative care consultants: (1) palliative care expertise including support and bridging communication and (2) organizational factors influencing communication including competing priorities and fragmentation of care. CONCLUSIONS: Palliative care was most beneficial for families at risk of experiencing communication problems that resulted from organizational factors, including those with long lengths of stay and medical complexity. The ability of palliative care consultants to bridge communication was limited by some of these same organizational factors. Physicians valued the involvement of palliative care consultants when they improved efficiency and promoted harmony. Given the increasing number of children with complex chronic conditions, it is important to support the capacity of ICU clinical teams to provide primary palliative care. We suggest comprehensive system changes and critical care physician training to include topics related to chronic illness and disability.

A Community Needs Assessment for the Development of an Interprofessional Palliative Care Training Curriculum.

BACKGROUND: There is a known shortage of trained palliative care professionals, and an even greater shortage of professionals who have been trained through interprofessional curricula. As part of an institutional Palliative Care Training Center grant, a core team of interprofessional palliative care academic faculty and staff completed a state-wide palliative care educational assessment to determine the needs for an interprofessional palliative care training program. OBJECTIVE: The purpose of this article is to describe the process and results of our community needs assessment of interprofessional palliative care educational needs in Washington state. DESIGN: We approached the needs assessment through a cross-sectional descriptive design by using mixed-method inquiry. SETTING/SUBJECTS: Each phase incorporated a variety of settings and subjects. MEASUREMENTS: The assessment incorporated multiple phases with diverse methodological approaches: a preparatory phase-identifying key informants; Phase I-key informant interviews; Phase II-survey; and Phase III-steering committee endorsement. RESULTS: The multiple phases of the needs assessment helped create a conceptual framework for the Palliative Care Training Center and developed an interprofessional palliative care curriculum. The input from key informants at multiple phases also allowed us to define priority needs and to refine an interprofessional palliative care curriculum. CONCLUSIONS: This curriculum will provide an interprofessional palliative care educational program that crosses disciplinary boundaries to integrate knowledge that is beneficial for all palliative care clinicians. The input from a range of palliative care clinicians and professionals at every phase of the needs assessment was critical for creating an interprofessional palliative care curriculum.

The Family Communication Study: A randomized trial of prospective pediatric palliative care consultation, study methodology and perceptions of participation burden.

BACKGROUND: To describe the study methods, baseline characteristics and burden of study procedures of an intervention designed to reduce family stress symptoms through early support from the palliative care team. Length of stay of ≥8days was the trigger for early palliative care involvement. METHODS: Cluster-randomized trial with children as the unit of randomization. Up to 3 family members per child were recruited. Family stress symptoms were recorded at baseline, discharge from the ICU, and 3months post-enrollment. Questionnaire burden was assessed on a 1-10 point scale at each time point and open-ended comments were analyzed to describe the participants' experience in the study. RESULTS: 380 family members of 220 children (control=115 children and 204 family members; intervention=105 children and 176 family members) were recruited, which represented 50% of all eligible families. Most family participants were parents (86% control; 92% intervention) and female (66% both groups). Retention rates were high through the 3-month follow-up: 93% and 90% for the control and intervention groups respectively. Questionnaire burden was very low: mean (sd) scores were 1.1 (1.6), 0.7 (1.5), and 0.9 (1.6) for the baseline, discharge and follow-up questionnaires, respectively. Comments suggest that participation was beneficial by promoting reflection and self-awareness about stress, coping and resilience, and feeling cared for because the intervention and questionnaires focused on their own well-being. CONCLUSIONS: The participants' comments regarding the focus on them as the point of intervention reflects the value of conducting research with family members of seriously ill children during ICU stays.

Examining palliative care team involvement in automatic consultations for children on extracorporeal life support in the pediatric intensive care unit.

BACKGROUND: Extracorporeal life support (ECLS) is an advanced form of life-sustaining therapy that creates stressful dilemmas for families. In May 2009, Seattle Children's Hospital (SCH) implemented a policy to involve the Pediatric Advanced Care Team (PACT) in all ECLS cases through automatic referral. OBJECTIVE: Our aim was to describe PACT involvement in the context of automatic consultations for ECLS patients and their family members. METHODS: We retrospectively examined chart notes for 59 consecutive cases and used content analysis to identify themes and patterns. RESULTS: The degree of PACT involvement was related to three domains: prognostic uncertainty, medical complexity, and need for coordination of care with other services. Low PACT involvement was associated with cases with little prognostic uncertainty, little medical complexity, and minimal need for coordination of care. Medium PACT involvement was associated with two categories of cases: 1) those with a degree of medical complexity but little prognostic uncertainty; and 2) those that had a degree of prognostic uncertainty but little medical complexity. High PACT involvement had the greatest medical complexity and prognostic uncertainty, and also had those cases with a high need for coordination of care. CONCLUSIONS: We describe a framework for understanding the potential involvement of palliative care among patients receiving ECLS that explains how PACT organizes its efforts toward patients and families with the highest degree of need. Future studies should examine whether this approach is associated with improved patient and family outcomes.

Palliative care in the pediatric ICU: challenges and opportunities for family-centered practice.

The culture of pediatric intensive care units (PICUs) is focused on curative or life-prolonging treatments for seriously ill children. We present empirically-based approaches to family-centered palliative care that can be applied in PICUs. Palliative care in these settings is framed by larger issues related to the context of care in PICUs, the stressors experienced by families, and challenges to palliative care philosophy within this environment. Innovations from research on family-centered communication practices in adult ICU settings provide a framework for development of palliative care in PICUs and suggest avenues for social work support of critically ill children and their families.

The prevalence and correlates of depressive symptoms among adolescent mothers: results from a 17-year longitudinal study.

The objective of the authors in this study was to examine the prevalence and correlates of elevated depressive symptoms in a 17-year cohort study of 173 women who were unmarried, pregnant adolescents between June 1988 and January 1990. Multiple logistic regression was used to estimate the associations between correlates and elevated depressive symptoms during five distinct developmental periods of the life course. Depressive symptoms were measured by the Brief Symptom Inventory depression subscale. The prevalence of elevated depressive symptoms in adolescent mothers significantly increased over the 17 years of the study from 19.8% to 35.2%. In adjusted analyses, antenatal depressive symptoms were positively and significantly associated with elevated depressive symptoms at every developmental period. Intimate partner violence was positively and significantly associated with elevated depressive symptoms during all but one developmental period. Other significant correlates of elevated depressive symptoms included welfare receipt, smoking, and parity, all of which were significant at some, but not other, developmental periods. Antenatal depressive symptoms and intimate partner violence were positively and significantly associated with elevated depressive symptoms. Given the public health consequences associated with maternal depression, clinical and community-based interventions should be developed to identify and to treat adolescent mothers at-risk for antenatal depression and intimate partner violence.

Screening for domestic violence in public welfare offices: an analysis of case manager and client interactions.

Despite a high prevalence of domestic violence among welfare clients, most studies of the implementation of the Family Violence Option (FVO) under welfare reform find that women rarely receive domestic violence services in welfare offices. This study reviews findings from current research on the factors that improve the likelihood that women will reveal their domestic violence experiences to service personnel, and uses the guidelines drawn from this review to evaluate domestic violence screening practices in welfare offices using 782 transcribed interviews between welfare workers and clients from 11 sites in four states. The analysis found that only 9.3% of case encounters involved screening for domestic violence. Screening rates differed by state, interview type, and length of worker employment. Qualitative analysis of the interviews showed that the majority of screening by workers was routine or consisted of informing clients of the domestic violence policy without asking about abuse. Only 1.2% of the interviews incorporated at least two of the procedures that increase the likelihood of disclosure among domestic violence survivors, suggesting deeply inadequate approaches to screening for abuse within the context of welfare offices, and a need for improved training, protocol, and monitoring of FVO implementation.