Families' Views of Pediatric Palliative Aquatics: A Qualitative Study.

Although pediatric palliative care policies and services have been developed, research in this area continues to lag. An integrated model of palliative care has been suggested by the American Academy of Pediatrics and includes complementary and alternative services aimed at improving the well-being of children and their families. The first-known pediatric palliative aquatics program (PPAP) in California uses several techniques to decrease pain and promote well-being through relaxation and interaction between patients, specialists, and family members. This study investigates the perceptions of family members of their children's experiences with a PPAP. Researchers from an outside institution conducted focus groups and interviews. Themes were extracted from the focus group transcripts using Braun and Clarke's method of inductive thematic analysis. Data were collected at the host site, local libraries, and participant homes. Participants were primary caregivers and siblings (n = 23) of children in a PPAP, an independent children's respite, transitional, and end-of-life care facility in California. The research described and drew implications from the diverse perceptions that family members expressed about the benefits of having a child in the PPAP, including sensory, physical, and social experiences. Although the PPAP aims to promote well-being through relaxation, several other benefits were expressed by family members of children going through the program, including pain relief.

The voices of young New Zealanders involved in pediatric palliative care.

The perspectives of young New Zealanders receiving pediatric palliative care (PPC) are not well understood. A qualitative study of the perceptions of 16 PPC patients and their siblings, aged 9 to 18, was conducted through audio and written diary accounts. Inductive thematic analysis revealed several concerns. of participants, including special treatment that patients had received, spending time with their families, their feelings of being judged or discriminated against, their sense of being understood themselves and of understanding others, and mortality. A nonjudgemental, open approach is recommended when consulting with patients and their siblings in order to determine their needs.

A Qualitative Study Describing Pediatric Palliative Care in Non-Metropolitan Areas of Illinois.

BACKGROUND: There is little information about providing pediatric palliative care (PPC) in non-metropolitan areas. OBJECTIVE: Describe the strengths of and challenges to delivering PPC in non-metropolitan communities and identify opportunities to improve care delivery. DESIGN: A qualitative study involving focus groups (FGs) with PPC stakeholders. SETTING/PARTICIPANTS: From 4 non-metropolitan areas in Illinois, we recruited 3 stakeholder groups: healthcare providers (HPs); bereaved parents; and parents caring for a seriously ill child (SIC). MEASUREMENTS: At each site, we held an FG with people of the same stakeholder group and then an FG involving all stakeholders. Discussion topics included: availability and strengths of local PPC services, barriers to local PPC, opportunities for improving local PPC access and quality, and clinician educational needs. We analyzed data using phenomenology and directed content analysis. RESULTS: Thirty people, 12 parents and 18 HPs, participated in FGs. Identified themes related to: PPC perceptions; availability and use of local resources; and challenges associated with travel, care coordination, and finances. Participants described benefits of and limits to local PPC including pediatric-specific issues such as attending to siblings, creating child peer-support activities, providing school guidance, and financing for PPC. Recommendations included suggestions to enhance care coordination, use existing resources, improve community and provider education, develop community networks, and minimize financial challenges. CONCLUSION: Unique PPC challenges exist in non-metropolitan areas. PPC in non-metropolitan areas would benefit from enhancing local resource utilization and quality. Future work should address the challenges to providing PPC in non-metropolitan areas with a focus on pediatric-specific issues.

Understanding Public Views about Air Quality and Air Pollution Sources in the San Joaquin Valley, California.

The San Joaquin Valley of California has poor air quality and high rates of asthma. Surveys were collected from 744 residents of the San Joaquin Valley from November 2014 to January 2015 to examine the public's views about air quality. The results of this study suggest that participants exposed to high PM2.5 (particulate matter less than 2.5 microns in size) concentrations perceived air pollution to be of the worst quality. Air quality in the San Joaquin Valley was primarily perceived as either moderate or unhealthy for sensitive groups. Females perceived air pollution to be of worse quality compared to males. Participants perceived unemployment, crime, and obesity to be the top three most serious community problems in the San Joaquin Valley. Participants viewed cars and trucks, windblown dust, and factories as the principle contributors to air pollution in the area. There is a need to continue studying public perceptions of air quality in the San Joaquin Valley with a more robust survey with more participants over several years and seasons.

Illness perceptions and coping determine quality of life in COPD patients.

BACKGROUND: A key goal of chronic obstructive pulmonary disease (COPD) care is to improve patients' quality of life (QoL). For outcomes such as QoL, illness perceptions and coping are important determinants. AIM: The primary aim was to assess the associations between illness perceptions, coping and QoL in COPD patients. A secondary aim was to compare illness perceptions and coping of patients with reference values derived from the literature. PATIENTS AND METHODS: A total of 100 patients were included in the study. Patients were asked to complete the Brief Illness Perception Questionnaire (B-IPQ), the Utrecht Proactive Coping Competence scale (UPCC), and a QoL item. Correlations and linear regression models were used to analyze the data. Student's t-tests were used to compare patients with COPD with reference values derived from the literature. RESULTS: Patients with better understanding of COPD utilized more proactive coping strategies (P=0.04). A more intense emotional response to COPD was related to less proactive coping (P=0.02). Patients who reported using more proactive coping techniques also reported to have a better QoL (P<0.01). Illness perceptions were also related to QoL: more positive illness perceptions were related to a better QoL (all P<0.05). Patients with COPD reported more negative illness perceptions than people with a common cold or patients with asthma (all P<0.01), but reported similar perceptions compared with patients with diabetes. CONCLUSION: Patients with COPD reported a moderate QoL, but appeared to be proficient in proactive coping. Illness perceptions, coping, and QoL were all associated with each other. Patients reported more strongly affected illness perceptions compared to people with a cold and patients with asthma. We postulate that a self-management intervention targeting patients' illness perceptions leads to improved QoL.

Latino and Non-Latino Perceptions of the Air Quality in California's San Joaquin Valley.

The San Joaquin Valley (SJV) of California has poor air quality, high rates of asthma, and high rates of obesity. Informational campaigns aimed at increasing awareness of the health impacts of poor air quality and promoting behavior change need to be tailored to the specific target audiences. The study examined perceptions of air quality, perceived health impacts, and methods of accessing information about air quality between Latinos and other groups in the SJV. Residents of the SJV (n = 744) where surveyed via one of three methods: community organizations (256), public locations (251), and an internet panel (237). The results suggest that people perceive the air quality in their region to be generally unhealthy, particularly for sensitive groups. The air quality is more likely to be reported as being unhealthy by people with health problems and less unhealthy by Latinos and people who report regularly exercising. Latinos are more likely to report working outdoors regularly, but also more likely to report being able to reduce their exposure if the air quality is unhealthy. The results report differences in informational sources about air quality, suggesting that informational campaigns should target high risk groups using a variety of media.

Families' Perspectives of Quality of Life in Pediatric Palliative Care Patients.

Medical and academic institutions began prioritizing Pediatric Palliative Care (PPC) less than two decades ago. Although policies and institutions claim to improve the Quality of Life (QoL) of PPC patients and their families, family-defined QoL remains ambiguous. This research investigates the definitions of QoL for PPC patients according to their primary caregivers. We conducted qualitative, semi-structured focus groups of the primary caregivers of PPC patients. The transcripts were analysed for themes using inductive thematic analysis. Participants included primary caregivers of children currently receiving PPC from a healthcare institution in California. We identified several factors that primary caregivers considered components of QoL for their children. The ability to communicate and adapt or be accepted underpinned the concept of QoL for families. QoL for PPC patients was defined by primary caregivers as being able to communicate in a respectful, controlled, physically- and socially-comfortable environment. Attempts to improve QoL should focus not only on pain and symptom control, but also on enhancing opportunities for children to communicate and maintain a sense of dignity.

Pediatric Coccidioidomycosis Patients: Perceptions, Quality of Life and Psychosocial Factors.

Research investigating the effects of coccidioidomycosis (valley fever) on children and the psychosocial implications of this disease in general is lacking. This study reviews what is known about pediatric coccidioidomycosis patients. It documents the psychological functioning, quality of life, and illness perceptions of a sample of coccidioidomycosis patient families. Primary caregivers of pediatric patients and patients from a major hospital in the San Joaquin Valley of California were interviewed regarding their perceptions of disease detection, access to care and the patient/family experience.

Siblings caring for and about pediatric palliative care patients.

BACKGROUND: The experiences of young people who have siblings with life-limiting illnesses are not well understood. AIM: The study proposed to identify the concerns of siblings of pediatric palliative care (PPC) patients. DESIGN AND MEASUREMENT: Semistructured interviews were administered to participants and analyzed using qualitative inductive thematic analysis. SETTING AND PARTICIPANTS: Study subjects were 18 siblings of PPC patients aged 9 to 22 living in the Auckland area. RESULTS: The siblings of PPC patients held concerns about their siblings' impending death and desires to be involved in their lives and care. CONCLUSIONS: Siblings may benefit from opportunities to be involved in conversations about mortality and the care of their ill sibling. They are able to express their concerns and help provide care to PPC patients.

Valley fever: danger lurking in a dust cloud.

Coccidioides immitis and Coccidioides posadasii contribute to the development of Valley Fever. The ability of these fungal pathogens to evade the host immune system creates difficulty in recognition and treatment of this debilitating infection. In this review, we describe the current knowledge of Valley Fever and approaches to improve prevention, detection, and treatment.

Caregivers' estimations of their children's perceptions of death as a biological concept.

Communication about death is often a sensitive topic in families with children. The present studied compared answers of 141 school children aged 5-7 to questions about death, and their caregivers' predictions. Children were interviewed, and caregivers answered on paper, questions on inevitability, applicability, irreversibility, cessation, causation, and personal mortality. For causation, cessation, and irreversibility, children were significantly more correct than caregivers expected, and girls were more correct on applicability. Communicating with children about death may not always be as caregivers expect.