Visualizing social support in home pediatric palliative care using network maps

2019 ◽  
Vol 34 (3) ◽  
pp. 378-386 ◽  
Author(s):  
Daniela Lindemann ◽  
Gian Domenico Borasio ◽  
Monika Führer ◽  
Maria Wasner
Keyword(s):  
Social Support ◽  
Palliative Care ◽  
Family Caregivers ◽  
Health Care Professionals ◽  
Qualitative Interviews ◽  
Pediatric Palliative Care ◽  
Oral Feedback ◽  
Digital Network ◽  
The Social ◽  
Palliative Care Teams

Background: Home care of children with life-limiting diseases is extremely challenging for parents/family caregivers and their social environment. In order to gain new insights into the perspective of family caregivers, we employed digital Network Maps for the first time in the field of pediatric palliative care. Aim: To examine whether the use of Network Maps helps to identify and visualize significant members of the social support system and the quality of the relationship, as well as the main areas of life that are experienced as being supportive by each individual. Design: The design was an integrated mixed methods study. Creation of Network Maps was assessed in conjunction with qualitative interviews. In addition, participants gave an oral feedback on the Network Maps themselves. Setting/participants: Parents of patients supported by a Specialized Home Pediatric Palliative Care team were eligible for inclusion. Forty-five parents were enrolled in the study. Results: All mothers and fathers were able to generate their individual Network Map without problems. The composition of the support systems differed greatly, even between members of the same family. Parents named on average 11 supporting actors, mainly family members and health care professionals. Some relationships were perceived as helpful and stressful at the same time. Conclusion: Network Maps appear to be an appropriate tool for the collection, reconstruction, and assessment of the current support situation of parents of dying children. Further studies should examine the usefulness of Network Maps for the understanding of the caregivers’ support needs and for the development of psychosocial interventional strategies by pediatric palliative care teams.

scholarly journals Paediatric palliative screening scale as a useful tool for clinicians’ assessment of palliative care needs of pediatric patients: a retrospective cohort study

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
In Gyu Song ◽  
Seung Yeon Kwon ◽  
Yoon Jung Chang ◽  
Min Sun Kim ◽  
Sung Hoon Jeong ◽  
...  
Keyword(s):  
Palliative Care ◽  
Retrospective Cohort ◽  
Pediatric Patients ◽  
Palliative Care Team ◽  
Pediatric Palliative Care ◽  
Care Needs ◽  
Palliative Care Teams ◽  
Primary Care Clinicians ◽  
Palliative Care Needs ◽  
Screening Scale

Abstract Background Although the importance of palliative care in pediatric patients has been emphasized, many health care providers have difficulty determining when patients should be referred to the palliative care team. The Paediatric Palliative Screening Scale (PaPaS) was developed as a tool for screening pediatric patients for palliative care needs. The study aimed to evaluate the PaPaS as a reliable tool for primary care clinicians unfamiliar with palliative care. Methods This was a retrospective cohort study of patients referred to the pediatric palliative care teams in two tertiary hospitals in the Republic of Korea between July 2018 and October 2019. Results The primary clinical and pediatric palliative care teams assessed the PaPaS scores of 109 patients, and both teams reported a good agreement for the sum of the PaPaS score. Furthermore, the PaPaS scores correlated with those obtained using the Lansky performance scale. Although the mean PaPaS score was higher in the pediatric palliative care team, the scores were higher than the cut-off score for referral in both groups. Conclusion The PaPaS can be a useful tool for primary care clinicians to assess the palliative care needs of patients and their families.

scholarly journals What does social support sound like? Challenges and opportunities for using passive episodic audio collection to assess the social environment

2020 ◽  
Author(s):  
Anubhuti Poudyal ◽  
Alastair van Heerden ◽  
Ashley Hagaman ◽  
Celia Islam ◽  
Ada Thapa ◽  
...  
Keyword(s):  
Mental Health ◽  
Social Support ◽  
Data Collection ◽  
Social Interactions ◽  
Social Environment ◽  
Mobile Phones ◽  
Adolescent Mothers ◽  
Qualitative Interviews ◽  
The Social ◽  
Audio Data

Abstract Background: The social environment, including social support, social burden, and quality of interactions, influences a range of health outcomes, including mental health. Passive audio data collection on mobile phones (e.g., episodic recording of the auditory environment without requiring any active input from the phone user) enables new opportunities to understand the social environment. We evaluated the use of passive audio collection on mobile phones as a window onto the relationship between the social environment within a study of mental health among adolescent mothers in Nepal.Methods: We enrolled 23 adolescent mothers who first participated in qualitative interviews to describe their social support and identify sounds potentially associated with that support. Then episodic recordings were collected for two weeks from the same women using an app to capture 30 seconds of audio every 15 minutes from 4am to 9pm. Audio data were processed and classified using a pretrained model. Each classification category was accompanied by a predicted accuracy score. Manual validation of the machine-predicted speech and non-speech categories (10%) was done for accuracy.Results: In qualitative interviews, mothers described a range of positive and negative social interactions and the sounds that accompanied these. Potential positive sounds included adult speech and laughter, baby babbling and laughter, and sounds from baby toys. Sounds characterizing negative stimuli included yelling, crying, screaming by adults and crying by babies. Sounds associated with social isolation included silence and TV or radio noises. Speech comprised of 43% of all passively recorded audio clips (n=7725). Manual validation showed a 23% false positive rate and 62% false-negative rate for speech, demonstrating potential underestimation of speech exposure. Other common sounds included music and vehicular noises.Conclusions: Passively capturing audio has the potential to improve understanding of the social environment. However, the limited accuracy of the pre-trained model used in this study did not adequately distinguish between positive and negative social interactions. To improve the contribution of passive audio collection to understanding the social environment, future work should improve the accuracy of audio categorization, code for constellations of sounds, and combine audio with other smartphone data collection such as location and activity.

scholarly journals P038: Does the pediatric emergency department have a role in pediatric palliative care?

CJEM ◽  
2017 ◽  
Vol 19 (S1) ◽  
pp. S90-S91
Author(s):  
A. Côté ◽  
N. Gaucher ◽  
A. Payot
Keyword(s):  
Emergency Medicine ◽  
Palliative Care ◽  
Continuity Of Care ◽  
Health Care Professionals ◽  
Moral Distress ◽  
Healthcare Providers ◽  
Clinical Situation ◽  
Pediatric Emergency ◽  
Pediatric Palliative Care ◽  
Pediatric Emergency Medicine

Introduction: Very little is known regarding the emergency department’s (ED) role in the care of paediatric patients with complex chronic and life-limiting illnesses. In fact, the provision of paediatric palliative care (PPC) in the paediatric ED has, of yet, never been explored. This study aims to explore pediatric emergency medicine healthcare professionals’ perspectives regarding their role in PPC and to compare these to other health care professionals’ understandings of the ED’s role in PPC. Methods: Interdisciplinary semi-structured focus groups were held with healthcare providers from pediatric emergency medicine, pediatric palliative care, pediatric complex care and pediatric intensive care. Exploratory open-ended questions introduced naturally occurring discussions and interactions. Data was transcribed in full and analysed using NVivo© software. Data analysis was performed by thematic analysis and theoretical sampling. Results: From January to October 2016, 58 participants were interviewed; most were female nurses and physicians. ED providers seek to maintain continuity of care and uphold pre-established wishes throughout PPC patients’ ED visits by listening and supporting the patient and family, evaluating the clinical situation, communicating with primary care teams and organising rapid admissions to wards. Some ED providers recognized having no choice to provide palliative care approach under certain circumstances despite thinking it might not be part of their culture and role. Each interdisciplinary team demonstrated particular values and cultures, influencing their understandings of the ED’s role in PPC; continuity of care is complicated by these distinct philosophies. Limitations to providing PPC in the ED are related to unsuitable physical environments, lack of uninterrupted time, efficiency expectations, unknown patients, provider lack of knowledge and moral distress. Solutions were directed at improving communication between teams and humanizing care to develop a sensibility to quality PPC in the ED. Conclusion: Although the perspective of pediatric ED’s role in caring for PPC patients is heterogeneous, several barriers to providing high quality emergency PPC can be overcome. Future studies will explore the experiences of PPC families presenting to the ED.

Burnout in Home Palliative Care: What Is the Role of Coping Strategies?

2019 ◽  
Vol 35 (1) ◽  
pp. 46-52 ◽  
Author(s):  
Giacomo Ercolani ◽  
Silvia Varani ◽  
Barbara Peghetti ◽  
Luca Franchini ◽  
Maria Beatrice Malerba ◽  
...  
Keyword(s):  
Palliative Care ◽  
Coping Strategies ◽  
Emotional Exhaustion ◽  
Health Care Professionals ◽  
Work Experience ◽  
General Health Questionnaire ◽  
Maslach Burnout Inventory ◽  
Personal Accomplishment ◽  
Cross Sectional ◽  
Palliative Care Teams

Objective: The study examines psychophysical distress of health-care professionals providing home-based palliative care. The aim is to investigate potential correlations between dimensions of burnout and different coping strategies. Methods: The present study is an observational cross-sectional investigation. The study involved all the home palliative care teams of an Italian nonprofit organization. Of a total of 275 practitioners working for the organization, 207 (75%) decided to participate in the study and complete questionnaires. Questionnaires employed were Maslach Burnout Inventory, General Health Questionnaire 12, Psychophysiological Questionnaire of CBA 2.0, and Coping Orientation to Problems Experienced. Professionals were physicians (50%), nurses (36%), and psychologists (14%). There were no exclusion criteria. Data were processed by SPSS 23 and analyses employed were Spearman ρ, Mann-Whitney U test, and 1-way analysis of variance on ranks. Results: Among participants, a low number of professionals were emotionally exhausted (11%) or not fulfilled at work (20%), whereas most of them complained of depersonalization symptoms (67%). Emotional exhaustion and depersonalization were found to be associated with avoidance coping strategies, whereas problem-solving and positive attitude were negatively associated with emotional exhaustion and positively with personal accomplishment. Moreover, using avoidance strategies was related to a worse psychological and physical condition. Conclusions: Findings suggest the need to provide professionals training programs about coping and communication skills tailored to fit the professionals’ needs according to their work experience in palliative care and aimed at improving the approach to patients and relatives.

Models of Knowing and Understanding

2018 ◽  
pp. 411-429
Author(s):  
Ann Oakley
Keyword(s):  
Social Support ◽  
Twentieth Century ◽  
Randomized Controlled Trial ◽  
Pregnancy Outcome ◽  
Controlled Trial ◽  
Qualitative Interviews ◽  
The Social ◽  
The Status ◽  
Research Findings

Whereas Chapter 11 examined what the Social Support and Pregnancy Outcome (SSPO) project can be said to have achieved in the way of research ‘findings’, this chapter broadens the framework of discussion to questions about the status of knowledge and methodologies of inquiry. It attempts to locate the SSPO study within the paradigm of the cultural turning-point referred to earlier — as an instance in the reworking of approaches to knowledge which characterizes intellectual debate in the latter part of the twentieth century. One way to approach this broader task from the specifics of the SSPO study is to ask what kind of methodology it is that combines the approach of a randomized controlled trial with that of ‘qualitative’ interviews.

scholarly journals Palliative Care Consult for Clinician Distress Through the Philosophical Lenses of Gender Norms and Phenomenology

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 245-245
Author(s):  
Anessa Foxwell ◽  
Salimah Meghani ◽  
Connie Ulrich
Keyword(s):  
Older Adults ◽  
Palliative Care ◽  
Gender Norms ◽  
Well Being ◽  
Future Research ◽  
Post Traumatic Stress ◽  
Social Construct ◽  
The Social ◽  
Palliative Care Teams ◽  
Seriously Ill

Abstract The National Academy of Medicine has raised significant concerns on clinician health and well-being as many experiencing burnout, post-traumatic stress, and depression. Indeed, clinicians experience a range of human emotions when caring for older adults with severe, life-limiting illnesses. These emotions may manifest in multiple ways and from various sources. Uncertain of how to attend to such distress, clinicians may consult a trusted resource, including the palliative care team. Palliative care specialists are trained to support the complexities and needs of patients and families; increasingly, however, palliative care consults are rooted in clinician distress. This session uses clinical case examples to explore the palliative care consult for distressed clinicians from two different philosophical perspectives: (1) phenomenology and (2) the social construct of gender norms. A phenomenological lens respects the unique, subjective lived experience of each individual in their day-to-day interactions with patients, families, and health care systems. Therefore, when caring for seriously ill older adults, clinicians may bring their own subjective experiences to the patient encounter and react differently to ethical dilemmas and conflicts that arise. The social construct of gender norms asks us to examine clinician distress from a different perspective. Here, the postmodern rejection of gender binarism allows clinicians to experience a spectrum of emotions and distress regardless of gender. Exploration through clinical cases will highlight the unique, varied experience of clinician distress and offer opportunities for future research into the role of palliative care teams in supporting distressed clinicians who care for seriously ill older adults.

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