Feasibility and Acceptability of Reiki Therapy for Children Receiving Palliative Care in the Home
acceptability; adolescent; child; feasibility; integrative; palliative care; pediatric; Reiki
Reiki is often used but not well studied in children. Yet, this gentle, light-touch therapy promotes relaxation and is appropriate for those receiving palliative care. This quasi-experimental pre-post mixed-methods 1-group pilot study examined the feasibility and acceptability of Reiki therapy as a treatment for children aged 7 to 16 years receiving palliative care. During the study, we recorded recruitment, retention, data collection rates, and percent completion of the intervention. Structured interviews with the mothers and verbal children were conducted to elicit their experience. Qualitative data were analyzed using thematic analysis. Twenty-one parent-child dyads agreed to participate and signed consent, whereas 16 completed the study (including verbal [n = 8] and nonverbal [n = 8] children). Themes included "feeling better," "hard to judge," and "still going on." Mothers and children were generally positive regarding the experience of receiving Reiki therapy. Children reported they "felt really relaxed," and mothers stated, "It was a good experience" and "She was relaxed afterward." The results of this pilot study show that Reiki was feasible, acceptable, and well-tolerated. Most participants reported it was helpful. Reiki therapy may be a useful adjunct with traditional medical management for symptoms in children receiving palliative care.
Thrane SE; Maurer SH; Danford CA
Journal of Hospice and Palliative Nursing
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/njh.0000000000000714" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000714</a>
Advance care planning in adolescents with cystic fibrosis: A quality improvement project
Advance Care Planning; Attitude To Health; Cystic Fibrosis/th [therapy]; Adolescent; Advance Directives; Cystic Fibrosis/pp [physiopathology]; Female; Forced Expiratory Volume; Humans; Male; Noninvasive Ventilation; Oxygen Inhalation Therapy; Patient Care Planning; Proxy; Quality Improvement; Severity Of Illness Index; Surveys And Questionnaires; Terminal Care; Young Adult
INTRODUCTION: Advance care planning (ACP), though recommended, has not been studied in adolescents with cystic fibrosis (CF). This quality improvement project engaged adolescents with advanced CF disease in ACP and assessed patient and CF provider attitudes and preferences regarding ACP discussions and tools. MATERIALS AND METHODS: Patients <=22 years with advanced CF (FEV<sub>1</sub> <=40% predicted, >2 pulmonary exacerbations requiring IV antibiotics in 1 year, and/or use of home oxygen or non-invasive ventilation) were referred to the pediatric palliative care team (PC). After establishing rapport, ACP was discussed using Voicing My CHOiCESTM: An Advanced Care Planning Guide (VMC). Patients completed a survey assessing attitudes and preferences around ACP. PC also led a training session for CF providers around ACP and VMC and provider attitudes were assessed via a pre- and post-training survey. RESULTS: Twelve patients (mean age 17.9+/-2.2 years) reviewed VMC and completed the ACP survey. The majority (83%) found ACP helpful. None felt it was harmful. All found VMC easy to understand and 90% felt it was appropriate for patients with CF. Of participating CF providers (pre-training, n=6; post-training, n=7), 83% found ACP worthwhile, but desired more training in this area. All found the training session useful and felt VMC was appropriate for patients with CF. DISCUSSION: Adolescents with advanced CF disease felt ACP was a positive experience and not harmful. CF providers valued ACP, but desired more training. Both patients and providers felt that VMC was a useful, disease-appropriate tool. Pediatr Pulmonol. 2016;51:1304-1310. � 2016 Wiley Periodicals, Inc.
Kazmerski TM; Weiner DJ; Matisko J; Schachner D; Lerch W; May C; Maurer SH
Pediatric Pulmonology
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/ppul.23559" target="_blank" rel="noreferrer">10.1002/ppul.23559</a>
Pediatric Palliative Care: A Five-Year Retrospective Chart Review Study
Child; Life Limiting; Life Threatening; Palliative Care; Patient Survival; Pediatric
BACKGROUND: More children are living with serious illness. However, survival and complexity of illnesses have not been described. OBJECTIVE: To describe types of illnesses, timing of referral, and time to death following referral to palliative care; to examine the associations between demographics and clinical characteristics and patient survival; and to examine whether average daily pain decreases after referral. DESIGN: Retrospective chart review of all children ages 2-16 years referred to palliative care at one large children's hospital during the five-year study period from January 1, 2009, through December 31, 2013. MEASUREMENTS: The primary outcome was patient survival and the main independent predictor was type of illness. Kaplan-Meier estimation was used to estimate patient survival time following referral, Cox proportional hazards regression was used to build predictive models based on gender, age, race, religion, and types of illnesses, and paired t-test compared the assessment of pain before and after referral. RESULTS: The cohort consisted of 256 children. Survival experience did not differ significantly based on gender, age, race, or religion (p ≥ 0.05); however, survival did vary based on referring diagnosis (χ2 = 40.3, df = 4, p < 0.001), particularly cancer. Forty-eight children with three days of pain assessments pre- and postreferral had significantly decreased pain postreferral (t(47) = 1.816, p < 0.05 one tailed), supporting our hypothesis. DISCUSSION: Results provide important information on the complexity of disease processes for children referred to palliative care, types of illnesses referred, survival, and pain levels. Results reflect earlier referral to palliative care for most children and highlight the medical complexity especially for children with congenital and genetic diagnoses.
Thrane SE; Maurer SH; Cohen SM; May C; Sereika SM
Journal Of Palliative Medicine
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1089/jpm.2017.0038" target="_blank" rel="noreferrer">10.1089/jpm.2017.0038</a>
Reiki Therapy For Symptom Management In Children Receiving Palliative Care: A Pilot Study
Anxiety; Pain; Palliative; Pediatric; Reiki; Symptom Management
BACKGROUND: Pain may be reported in one-half to three-fourths of children with cancer and other terminal conditions and anxiety in about one-third of them. Pharmacologic methods do not always give satisfactory symptom relief. Complementary therapies such as Reiki may help children manage symptoms. OBJECTIVE: This pre-post mixed-methods single group pilot study examined feasibility, acceptability, and the outcomes of pain, anxiety, and relaxation using Reiki therapy with children receiving palliative care. METHODS: A convenience sample of children ages 7 to 16 and their parents were recruited from a palliative care service. Two 24-minute Reiki sessions were completed at the children's home. Paired t tests or Wilcoxon signed-rank tests were calculated to compare change from pre to post for outcome variables. Significance was set at P < .10. Cohen d effect sizes were calculated. RESULTS: The final sample included 8 verbal and 8 nonverbal children, 16 mothers, and 1 nurse. All mean scores for outcome variables decreased from pre- to posttreatment for both sessions. Significant decreases for pain for treatment 1 in nonverbal children ( P = .063) and for respiratory rate for treatment 2 in verbal children ( P = .009). Cohen d effect sizes were medium to large for most outcome measures. DISCUSSION: Decreased mean scores for outcome measures indicate that Reiki therapy did decrease pain, anxiety, heart, and respiratory rates, but small sample size deterred statistical significance. This preliminary work suggests that complementary methods of treatment such as Reiki may be beneficial to support traditional methods to manage pain and anxiety in children receiving palliative care.
Thrane SE; Maurer SH; Dianxu Ren; Danford CA; Cohen Susan M
The American Journal Of Hospice & Palliative Care
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1177/1049909116630973
Pediatric Palliative Care Pilot Curriculum: Impact Of "pain Cards" On Resident Education
Adult; Communication; Curriculum; Female; Health Knowledge Attitudes Practice; Hospitals Pediatric/organization & Administration; Humans; Internship And Residency/methods; Male; Pain Management; Pain Measurement; Palliative Care; Pediatrics/education; Pilot Projects
Palliative Care Curriculum; Palliative Care Education; Pediatric Palliative Care; Pediatric resident; Pocket cards; Resident education
BACKGROUND:
Prior research has shown that less than 40% of pediatric program directors believe their graduating residents competent in palliative care. While many curricula have been developed to address this need, few have demonstrated improved comfort and/or knowledge with palliative care principles. The purpose of this study was to test a pocket card educational intervention regarding resident knowledge and comfort with palliative care principles.
METHODS:
Pocket reference cards were created to deliver fundamentals of pediatric palliative care to resident learners; didactics and case studies emphasized principles on the cards. Self-reported comfort and objective knowledge were measured before and after the curriculum among residents.
RESULTS:
Of 32 post-graduate year 2 (PGY2) residents, 23 (72%) completed the pre-test survey. The post-test was completed by 14 PGY2 residents (44%) and 16 of 39 PGY3/4 residents (41%). There was improvement in comfort with communication, as well as pain and symptom management among the residents. Knowledge of palliative care principles improved in part, with only a few survey questions reaching statistical significance. 100% of respondents recommended the cards be provided to their colleagues.
CONCLUSION:
This longitudinal curriculum, designed specifically for pediatric residents, was built into an existing training program and proved to be popular, feasible, and effective at improving comfort with basic palliative care principles.
Barnett MD; Maurer SH; Wood GJ
American Journal Of Hospice And Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1177/1049909115590965
Assessment Of The Spiritual Needs Of Primary Caregivers Of Children With Life-limiting Illnesses Is Valuable Yet Inconsistently Performed In The Hospital.
Quality Of Life; Pediatric Palliative Care; Religion; Cancer-patients; Health Care Sciences & Services Associations
BACKGROUND:
Religion and spirituality influence how many patients and families experience illness, but knowledge of the level of spiritual care provided to caregivers of pediatric patients within the hospital is limited.
OBJECTIVE:
We evaluated patient caregivers' perceptions of the extent to which their religious and spiritual (R/S) needs were assessed and addressed in the hospital.
METHODS:
We surveyed primary caregivers of children referred to palliative care <1 year prior at an urban, pediatric academic medical center. Participants completed a structured questionnaire with quantitative and qualitative measures of the provision of spiritual care in the hospital. Nonparametric tests were used to compare various measures of perceived and desired R/S support.
RESULTS:
The majority (16/24) of caregivers desired inquiry about R/S needs by the medical team. Fewer than half (12/25) had these needs assessed. No subjects were uncomfortable with questions regarding R/S needs. Only 35% (8/23) specifically wanted a physician to inquire about R/S needs. Subjects whose R/S needs were assessed perceived higher levels of support from the medical team (4.40 versus 3.08, p = 0.02). A significant correlation existed between number of hospital-based R/S resources used and reported R/S-related comfort (rs = 0.438, p = 0.043).
CONCLUSIONS:
Assessment of R/S needs of caregivers of pediatric palliative care patients is performed less often than desired, even though it can improve perceptions of support from medical teams. Use of hospital-based R/S resources can increase spiritual comfort. Standardizing assessment of caregivers' R/S needs and referral to appropriate resources is a target for quality improvement in pediatric palliative medicine.
Kelly JA; May CS; Maurer SH
Journal Of Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Feasibility And Acceptability Of A Reiki Therapy Intervention For Children Receiving Palliative Care
Background: Children are receptive to complementary therapies such as music, massage, and distraction for symptom management. Reiki therapy is ideal for children; particularly those receiving palliative care because it is a gentle, light touch therapy that promotes relaxation. This pre/post mixed-methods single group pilot study examined feasibility and acceptability of Reiki therapy for children receiving palliative care. Methods: A convenience sample of children (7 to16 years) together with a parent was recruited from a large palliative care service. Two 24-minute protocolized Reiki therapy sessions (12 hand positions for 2 minutes each) were administered at the child’s home by a single Reiki master. Recruitment, retention, and data collection rates were documented. Structured interviews were completed with parents and verbal children to elicit their experiences with the Reiki therapy sessions. Descriptive statistics and thematic analysis were conducted. Results: Twenty-one (87.5%) of the 24 child-parent dyads approached consented to the study. Sixteen dyads completed the study (eight with verbal and eight with non-verbal children). All 16 mothers (100%) stated they would participate in the study again and 100% of the verbal children liked the way the Reiki was done. Themes identified by both parents and children included Feeling Better (with subthemes Really Relaxed, Not Hurting That Bad, Calmed Me Down, Happier, and Heats Me Up), and Still Going On. Parents also identified Hard to Judge. Conclusions: The results of this pilot study demonstrate the feasibility and acceptability of Reiki therapy for children receiving palliative care. Parents and children were generally positive regarding the experience of receiving Reiki therapy. Verbal children reported they ‘felt really relaxed,’ and mothers stated, ‘it was a good experience’ and ’she was relaxed afterward.’ These results offer evidence that Reiki therapy may be a useful addition to traditional medical management of symptoms in children receiving palliative care.
Thrane SE; Danford CA; Maurer SH; Dianxu Ren; Cohen Susan M
Journal Of Pain And Symptom Management
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://dx.doi.org/10.1016/j.jpainsymman.2016.10.299" target="_blank" rel="noreferrer">DOI: http://dx.doi.org/10.1016/j.jpainsymman.2016.10.299</a>