Engaging Fathers in Pediatric Palliative Care Research.

Fathers are under-represented in pediatric palliative care research despite frequently playing a key role in the lives of their children. The purpose of this study was to identify factors that affected paternal study invitation and participation. A secondary mixed-methods evaluation design guided examination of interview and focus group data as well as field notes from a qualitative study that examined the experiences and support needs of fathers of children with a life-limiting illness. Facilitators of paternal participation in the study consisted of: fathers' desire to gain from study participation either for themselves or others, perception of the study's importance, sense of appreciation for the study's focus on fathers and an established relationship with recruiting health care providers. Barriers to study participation included: recruiting health care providers' appraisal of fathers' lack of well-being, bereaved fathers' self-reported poor coping and the inability to locate and contact fathers, particularly after a child's death. Strategies for improving the engagement of fathers into research entailed: educating recruitment personnel, designing "father-focused" studies, communicating the value of the research to recruitment personnel and potential participants, and ensuring that child health records are accurate and include fathers' contact information.

The experiences of physicians, nurses, and social workers providing end-of-life care in a pediatric acute-care hospital.

This qualitative study explored the experiences of social workers, nurses, and physicians providing end-of-life care to children in a pediatric acute-care hospital setting. Findings demonstrated that participants experienced both professional and personal impacts of their work and employed various coping strategies under each of these domains. The acute-care setting was found to create unique challenges in providing end-of-life care. Implications for policy and practice include promotion of both individual and institutional-level coping strategies and supports that meet the various needs of staff. Implications for future research include a nuanced examination of differences in experiences among nurses, social workers, and physicians.

Siblings' voices: A prospective investigation of experiences with a dying child.

Sibling relationships reflect a unique childhood bond, thus the impact on a sibling when a child is seriously ill or dying is profound. We conducted a prospective, longitudinal, qualitative study over 2 years using interpretive descriptive methodology to understand siblings' perspectives when a brother or sister was dying at home or in hospital. The insights from the 10 siblings revealed complex experiences, both personal and with the ill child, their families, and peers. These experiences were paradoxically sources of strain and of support, revealing the importance of validation and normalization in assisting siblings to successfully navigate the experience.

The emergence of personal growth amongst healthcare professionals who care for dying children.

ABSTRACTObjective:Compassion fatigue, burnout, and vicarious traumatization are prominent topics in the current literature on the impact of the rewarding but challenging work of healthcare professionals who care for patients with life-limiting illnesses. The positive effects of caregiving constitute a newly emerging outcome that has been relatively unexplored in the pediatric literature, and yet they may play an important role in contributing to the satisfaction and well-being of the healthcare professionals who care for children who have a life-limiting illness. METHOD: This paper reports the results of a secondary analysis of qualitative interview transcripts that explored the experiences of hospital-based pediatric healthcare providers caring for children with varied life-limiting illnesses. In-depth qualitative interviews were conducted with 25 healthcare professionals (9 social workers, 8 nurses, and 8 physicians). The majority of participants were women (80%), with an age range between 20 and 60 years, and most (84%) had the experience of caring for more than 15 dying children. Thematic analysis was conducted using interpretive description and constant comparison. RESULTS: Every healthcare professional interviewed experienced personal growth as a result of their providing care for dying children. Three dimensions of personal growth were most consistently reported: (1) new or altered life perspectives, (2) enhanced personal resources, and (3) benevolence. SIGNIFICANCE OF RESULTS: A deeper understanding of the phenomenon of personal growth could help healthcare organizations to implement innovative approaches that would counterbalance compassion fatigue, and thereby enhance both healthcare provider well-being and child and family outcomes.

Parental spirituality in life-threatening pediatric cancer.

This study addressed parental spirituality in the context of pediatric cancer with a poor prognosis. Drawing upon previous research implementing a longitudinal grounded theory design examining parental hope, 35 parents were interviewed regarding their experiences with an emergent description of the role of spirituality in parents' daily lives. Spirituality included religious beliefs and practices, notions of a higher force or cosmos, relationship with a divine being, as well as elements emerging from meaning-making and relationships. Parental expectations of spirituality remained relatively constant across data collection time points (3-9 months postdiagnosis), although limited variation occurred relative to shifting circumstance (e.g., deterioration of the child's condition). Spirituality appeared to offer: greater acceptance of parents' inability to protect their child from harm related to her/his life-threatening illness, guidance and emotion decompression, and support from one's faith community. Recommendations for integrating spiritual assessment in clinical care practice are offered.

Examining the Experiences of Fathers of Children with a Life-Limiting Illness.

Families who have a child diagnosed with a life-limiting illness (LLI) face substantial challenges resulting from the complexity and devastating impact of the condition and potential closeness of death. The experiences of fathers of a child with LLI have been understudied; therefore, this study explored the stresses, experiences, and strategies of these fathers, including their perceptions about support needs. Based on grounded theory, in-depth semi-structured interviews were conducted with 18 fathers of children with LLI. Six fathers had experienced the death of their child. The overarching themes were stresses, means of coping, and perceived needs for support. Generally, fathers in this study struggled relative to discursive and internalized notions of fathers as providers and protectors for their children, combined with an inability to ease their child's vulnerability to LLI. Participants were engaged in the care of their child with LLI, but several felt marginalized by health care providers in care planning and staff/family communication. Some fathers recognized and valued their support network while others had few supports. Some described personal growth and desired to help other fathers. Practice implications and recommendations include renewed application of family-centered care, overcoming presumptions about fathers' roles, and recognizing the impact of LLI beyond physical health.

Poverty and pediatric palliative care: what can we do?

It has been recognized that families of children with life-limiting health conditions struggle with significant financial demands, yet may not have awareness of resources available to them. Additionally, health care providers may not be aware of the socioeconomic needs of families they care for. This article describes a mixed-methods study examining the content validity and utility for health care providers of a poverty screening tool and companion resource guide for the pediatric palliative care population. The study found high relevance and validity of the tool. Significant barriers to implementing the screening tool in clinical practice were described by participants, including: concerns regarding time required, roles and responsibilities, and discomfort in asking about income. Implications for practice and suggestions for improving the tool are discussed. Screening and attention to the social determinants of health lie within the scope of practice of all health care providers. Social workers can play a leadership role in this work.

What About Empathy? A Qualitative Study Exploring the Role of a Podcast as an Asynchronous Empathy Teaching Tool.

Purpose: Though medical education podcasts are fast gaining popularity, they are overwhelmingly focused on teaching the medical expert role of physicians. We explored how medical learners and educators engaged with and learned from an empathy and communication-focused podcast and sought their recommendations for integrating the podcast into medical curricula. Methods: Six virtual, semi-structured focus groups were conducted with educators and learners within a large urban hospital and university setting. Participants were asked to listen to pre-selected episodes of the About Empathy podcast in advance. Thematic analysis was used to explore experiences and perceptions of empathy teaching and learning. Results: There were 24 participants. We identified six themes related to the podcast and empathy learning: (1) forging connection through stories, (2) creating space to reflect on empathy, (3) shifting perspectives and biases, (4) feeling validated and enabling self-compassion, (5) gaining knowledge and building skills through empathetic communication, and (6) translating new knowledge and skills into practice. Participants highlighted that the podcast's portability and asynchronous nature allowed them to be more fully present, reflective, and intentional in their learning. Discussion: The About Empathy podcast was experienced as a flexible, just-in-time tool that promoted self-agency over one's learning, reflective practice, and knowledge and skill acquisition, particularly with respect to empathic communication. Benefits of asynchronous e-learning tools such as podcasts support a shift to a blended learning model. Challenges finding a curricular home for this empathy-focused podcast require further consideration.

Tough transitions: Family caregiver experiences with a pediatric long-term ventilation discharge pathway.

OBJECTIVES: Discharging a child home on long-term ventilation (LTV) via tracheostomy is complex and involves multiple healthcare providers across healthcare sectors. To date, there has been a paucity of data with respect to the experiences of families transitioning a child home on LTV. Our objective was to explore the perceptions of family caregivers (FCs) who have completed a newly developed LTV discharge pathway as they transitioned home. METHODS: We conducted 11 semi-structured interviews with FCs. Interviews focused on FC's experience with the training process, perception of competency from a knowledge and skill perspective, and opportunities for improvement. Interviews were audiotaped, transcribed verbatim, coded, and analyzed using an inductive thematic analysis approach. RESULTS: Eight mothers and three fathers of ten children participated. Six primary themes were identified: (1) making an informed decision, (2) transitioning to rehabilitation, (3) building capacity for self-care, (4) coordinating case management, (5) readying for discharge home, and (6) experiencing home care. CONCLUSION: Overall, FCs felt that the preparation and transition support obtained through the application of a standardized LTV discharge pathway allowed successful attainment of new knowledge and skills necessary to care for their child with LTV at home.

Toward an Understanding of Advance Care Planning in Children With Medical Complexity.

BACKGROUND AND OBJECTIVES: Children with medical complexity (CMC) often have multiple life-limiting conditions with no unifying diagnosis and an unclear prognosis and are at high risk for morbidity and mortality. Advance care planning (ACP) conversations need to be uniquely tailored to this population. Our primary objective for this study was to develop an in-depth understanding of the ACP experiences from the perspectives of both parents and health care providers (HCPs) of CMC. METHODS: We conducted 25 semistructured interviews with parents of CMC and HCPs of various disciplines from a tertiary pediatric hospital. Interview guide questions were focused on ACP, including understanding of the definition, positive and negative experiences, and suggestions for improvement. Interviews were conducted until thematic saturation was reached. Interviews were audio recorded, transcribed verbatim, coded, and analyzed using content analysis. RESULTS: Fourteen mothers and 11 HCPs participated in individual interviews. Interviews revealed 4 major themes and several associated subthemes (in parentheses): (1) holistic mind-set, (2) discussion content (beliefs and values, hopes and goals, and quality of life), (3) communication enhancers (partnerships in shared decision-making, supportive setting, early and ongoing conversations, consistent language and practice, family readiness, provider expertise in ACP discussions, and provider comfort in ACP discussions), and (4) the ACP definition. CONCLUSIONS: Family and HCP perspectives revealed a need for family-centered ACP for CMC and their families. Our results aided the development of a family-centered framework to enhance the delivery of ACP through a holistic mind-set, thoughtful discussion content, and promoting of conversation enhancers.

Mothers' Perceived Barriers to and Recommendations for Health Care Appointment Keeping for Children Who Have Cerebral Palsy.

Children with cerebral palsy (CP) require ongoing rehabilitation services to address complex health care needs. Attendance at appointments ensures continuity of care and improves health and well-being. The study's aim was to gain insight into mothers' perspectives of the factors associated with nonattendance. A qualitative descriptive design was conducted to identify barriers and recommendations for appointment keeping. Semi-structured interviews were conducted with 15 mothers of children with CP. Data underwent inductive qualitative analysis. Mothers provided rich context regarding barriers confronted for appointment keeping-transportation and travel, competing priorities for the child and family, and health services. Mothers' recommendations for improving the experience of attending appointments included virtual care services, transportation support, multimethod scheduling and appointment reminders, extended service hours, and increased awareness among staff of family barriers to attendance. The results inform services/policy strategies to facilitate appointment keeping, thereby promoting access to ongoing rehabilitation services for children with CP.

Pediatric patients receiving palliative care in Canada: results of a multicenter review.

OBJECTIVES: To describe the patients who received care from the 8 dedicated pediatric palliative care programs in Canada in 2002 and to estimate the number of children who may have benefited but did not receive services from these programs. DESIGN: Retrospective review of medical records combined with a survey of each program. SETTING: Seven pediatric palliative care programs based in tertiary care settings and 1 freestanding children's hospice. PARTICIPANTS: The programs cared for 317 children during 2002, of whom 123 died during that year. An additional 32 children died by the end of 2003. MAIN EXPOSURE: Pediatric palliative care program. RESULTS: Nearly half (48.6%) of the patients were younger than 5 years, and almost half of these were younger than 1 year. Primary diagnoses were disorders of the nervous system (39.1%), malignancies (22.1%), and conditions arising in the perinatal period or congenital anomalies (22.1%). Most of the children (43.9%) died at home, with those centers reporting more comprehensive home care services having the highest percentage of home deaths. From a national perspective, between 5% and 12% of the children who could benefit from palliative care received services from 1 of these programs. CONCLUSIONS: Pediatric palliative care programs in Canada care for a diverse population of patients with a wide range of age and disease conditions. Only a small percentage of children who die, however, receive services from these dedicated programs.

The tenacity and tenuousness of hope: parental experiences of hope when their child has a poor cancer prognosis.

BACKGROUND: The meaning and role of hope in parents of children with life-threatening illnesses remain relatively unstudied. OBJECTIVE: The objectives of this study were to explore parental hope when a child is being treated for a malignancy resistant to treatment and to identify facilitators and barriers to maintaining hope in this context. METHODS: Thirty-five parents of children with difficult-to-treat cancer were interviewed 3 months after diagnosis. Line-by-line coding of transcripts was used to establish categories and themes. Constant comparison was used to examine relationships within and across codes and categories. RESULTS: Parental hope was related to the child's cure and future. The concept, however, oscillated between being tenacious and robust, and tenuous and elusive, depending on how the child was responding to treatment and the psychosocial context. Focusing on positive outcomes and experiences, spirituality, and social support facilitated being hopeful. Awareness of negative outcomes, information overload, physical and emotional depletion, and fear and uncertainty challenged parental hope. CONCLUSIONS: Developing a model that identifies the nature of parental hope as well as barriers and facilitators to maintaining hope shortly after childhood cancer diagnosis may assist healthcare professionals in supporting parents. IMPLICATIONS FOR PRACTICE: Understanding parental hope may assist healthcare professionals to avoid overloading parents with too much information at once. Healthcare professionals can also ensure that social support from family, community, and the medical center is available for parents and that their physical and emotional needs are being met to ensure that they maintain hope to best care for their child with cancer.

Adolescents' perspectives on living and growing up with Treacher Collins syndrome: a qualitative study.

OBJECTIVE: This study explored the experiences and essences of growing up and living with Treacher Collins syndrome (TCS) from an adolescent perspective. DESIGN: A qualitative approach using the long interview method was used to explore the adolescents' experiences. Semistructured interviews and peer debriefing techniques were used to gather and verify data with each participant. PARTICIPANTS: A purposive sampling technique was used to recruit a sample of six adolescents with TCS, ranging in age from 12 to 18 years, who received care from a craniofacial center in a large pediatric hospital. RESULTS: The themes central to the adolescents' experiences were balancing sameness and difference and the journey toward social and self-acceptance. Five subthemes further described this experience: reconstructing perceptions of others; making meaning of the difference; forming friendships and fitting in; handling staring and teasing; and excelling. CONCLUSIONS: The study group described good psychosocial adjustment, experienced an increasing acceptance of self, TCS, and social acceptance over time and demonstrated resilient adaptive strategies (optimism, motivation, and positive meaning making). They were, however, also challenged by the social stigma associated with difference and by the challenges of finding a good fit in their school environments in meeting unique needs, particularly in their early grades. This study highlights the value of using a qualitative research approach in furthering our understanding of the experiences of children and youth with facial differences.