Perception of pediatric oncology family care providers toward palliative care and its perceived barriers in Egypt

2021 ◽  
pp. 1-7
Author(s):  
Magda Aly Mohamed ◽  
Ateya Megahed Ibrahim ◽  
Hanaa Mohamed Ibrahim ◽  
Nabila Abdella ◽  
Reda Ibrahim Elmowafy
Keyword(s):  
Palliative Care ◽  
Pediatric Oncology ◽  
Positive Attitude ◽  
Family Care ◽  
Continuing Professional Development ◽  
Structured Interview ◽  
Perceived Barriers ◽  
Care Providers ◽  
Sufficient Knowledge ◽  
Living With Cancer

Abstract Background Palliative care is comprehensive supportive care addressing the suffering, pain, discomfort, symptoms, and stress of cancer and any serious life-threatening disease. It is a key part of care for our children living with cancer and is an important source of support for their families. The study aimed to assess the perception of pediatric oncology family care providers toward palliative care and its perceived barriers in Egypt. Method Total number of 500 oncology children's family care providers was recruited. A descriptive research design was utilized. Researchers used three tools as Structured Interview Questionnaire to assess the participants' knowledge and perceived barriers, Attitude toward palliative care Likert Scale, and Reported Practices Observational Checklist. The study was conducted in outpatient cancer clinics affiliated with El-Nasr governmental hospital located at Port Said governorate. Results 51.8% of the total oncology children's family care providers had sufficient knowledge, 78.6% had a positive attitude, while,76.8% of them had inappropriate Practice towards palliative care. Significance of results The pediatric oncology family care providers had sufficient knowledge and a positive attitude toward palliative care, but their practices were inappropriate. Also, the majority of participants identified Lack of family care providers training in pediatric palliative care and improper communication between the health team and family care providers as the main barriers to providing palliative care to children. Providing a palliative care training program for family caregivers through continuing professional development is highly recommended besides further research studies using large probability samples at different settings.

scholarly journals Domiciliary Care Providers Views on Provision of Palliative Care for their Cancer Patients

2018 ◽  
Vol 4 (1) ◽  
pp. 1-7
Author(s):  
Meegoda MKDL ◽  
Fernando DMS ◽  
Sivayogan S ◽  
Atulomah NOS ◽  
Marasinghe RB
Keyword(s):  
Palliative Care ◽  
Sri Lanka ◽  
Cancer Patients ◽  
Family Care ◽  
Sampling Technique ◽  
Target Population ◽  
Care Providers ◽  
Care Needs ◽  
Domiciliary Care ◽  
Depth Interviews

A qualitative study was conducted to describe views and life experiences of domiciliary care providers in meeting the palliative care needs of adult cancer patients at the National Cancer Institute, Maharagama, Sri Lanka. The target population for this study was Domiciliary Care Providers (DCPs) who were the family care givers of patients at National Institute of Cancer, Maharagam (NICM), Cancer Home (CH), Maharagama, Shantha Sevana Hospice (SSH) and Ceylinco Oncology Unit (COU), Colombo, Sri-Lanka. Purposive sampling technique was used to select participants for the study. In-depth interviews were conducted using validated semi-structured interviewer guide. Data saturation was reached after 15 in-depth interviews with DCPs. Trustworthiness of the study was maintained. Phenomenological-hermeneutic approach was followed to analyze qualitative data and thematic analysis was performed. Data analysis was done concurrently with data gathering. Being reassured, having more expectations, need psychosocial help and inadequate knowledge were the key themes identified. They expect knowledge improvement to provide better care. As patients’ level of satisfaction on domiciliary care provided by DCPs was high, improving their knowledge on palliative care may be a cost effective method of improving palliative care.

Knowledge, Beliefs, and Behaviors Related to Palliative Care Delivery Among Pediatric Oncology Health Care Providers

2018 ◽  
Vol 35 (4) ◽  
pp. 247-256 ◽  
Author(s):  
Jessica L. Spruit ◽  
Cynthia J. Bell ◽  
Valerie B. Toly ◽  
Maryjo Prince-Paul
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Health Care Providers ◽  
Pediatric Oncology ◽  
Health Care Professionals ◽  
Care Delivery ◽  
Advanced Practice ◽  
Care Providers ◽  
The Public ◽  
Patients With Cancer

The care of pediatric patients with cancer and their families is complex and rapidly evolving. Despite significant advances in outcomes, symptoms of the disease and complications of therapy continue to cause suffering that may improve with the involvement of pediatric palliative care (PPC) services. This descriptive study responds to the observation of great variability in PPC utilization within pediatric oncology. Data collected from 156 health care professionals (nurses, advanced practice professionals, and physicians) from a statewide hematology alliance evaluates the knowledge, beliefs, and perceived barriers to PPC involvement. Data analysis reveals significant variability when comparing respondents from professional roles and practice environments. Despite progress in PPC availability, care delivery remains incongruent with current recommendations. Knowledge gained from this study emphasizes the important role for all health care providers in advocating for support of PPC programs, educating the public, and committing to intentional involvement of PPC services while caring for pediatric oncology patients.

scholarly journals Shared decision making in Australian physiotherapy practice: A survey of knowledge, attitudes, and self-reported use

PLoS ONE ◽  
2021 ◽  
Vol 16 (5) ◽  
pp. e0251347
Author(s):  
Tammy Hoffmann ◽  
Elizabeth Gibson ◽  
Christopher Barnett ◽  
Christopher Maher
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Positive Attitude ◽  
Continuing Professional Development ◽  
Skills Training ◽  
Perceived Barriers ◽  
Shared Decision ◽  
Online Questionnaire ◽  
Physiotherapy Practice ◽  
Level Of Knowledge

Objective To assess Australian physiotherapists’ knowledge about, attitudes towards, and self-reported use of shared decision making, as well as perceived barriers to its implementation in practice. Methods Physiotherapists registered for a national Australian physiotherapy conference were invited via email and the conference app to complete a self-administered online questionnaire about shared decision making, including: a) knowledge, b) attitude to and reported approach in practice, c) behaviours used, d) barriers, e) previous training and future training interest. Responses were analysed descriptively and open-ended questions synthesised narratively. Results 372 physiotherapists (71% female, mean age 45 years, mean experience 23 years) completed the survey. Respondents had a good level of knowledge on most questions, with correct responses ranging from 39.5% to 98.5% of participants, and a generally positive attitude towards shared decision making, believing it useful to most practice areas. Sixty percent indicated they make decisions with their patients and there was general agreement between how decisions should be made and how they are actually made. The behaviour with the lowest reported occurrence was explaining the relevant research evidence about the benefits and harms of the options. The main perceived barriers were patient knowledge and confidence, consequent fewer physiotherapy sessions, and time constraints. Most (79%) were keen to learn more about shared decision making. Conclusions Shared decision making is of growing importance to all health professions and rarely studied in physical therapy. This sample of Australian physiotherapists had a generally positive attitude to shared decision making and learning more about it. Opportunities for providing such skills training at the undergraduate level and in continuing professional development should be explored. This training should ensure that the communicating evidence component of shared decision making is addressed as well as debunking myths about perceived barriers to its implementation.

Barriers between providers and families regarding palliative care integration in a multidisciplinary pediatric oncology practice.

2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 121-121
Author(s):  
Lauren Draper ◽  
Samantha Pannier ◽  
Karely Mann ◽  
Douglas Beaty Fair ◽  
Holly Perlman ◽  
...  
Keyword(s):  
Palliative Care ◽  
Supportive Care ◽  
Pediatric Oncology ◽  
Current System ◽  
Tertiary Care ◽  
Care Hospital ◽  
Care Providers ◽  
Major Barrier ◽  
Early Integration ◽  
Strongly Agree

121 Background: Pediatric oncology patients are known to have high symptom burden. The pediatric oncology population is a natural fit for early integration of palliative care (PC), yet there are often systemic and communication barriers. We assessed oncologists and supportive care providers’ beliefs about PC and described how well prognosis is currently communicated between clinical team members and families. Methods: Primary Children’s Hospital (PCH) is the only pediatric tertiary care hospital serving the Mountain West region. We conducted surveys and semi-structured interviews with all pediatric oncologists at PCH (N = 12) and supportive care providers such as nurses and social workers (N = 13). Surveys were also administered to caregivers of patients (N = 23). Descriptive statistics were generated. Results: Oncologists and and supportive care providers differ even in their beliefs about who should receive PC and when it should begin. 41.7% (N = 5) of attending pediatric oncologists strongly agreed that their patients could benefit from a comprehensive PC consultation and that this should happen around the time of diagnosis. Of the supportive care providers only 15% (N = 2) strongly agree that their patients could benefit from a PC consultation, but 38% strongly agree it should begin at the time of diagnosis. Of the physicians, 33% (N = 4) believe the system currently in place is “adequate,” while only 8% (N = 1) of supportive care providers agree. Physicians report 100% of the time that they “often or always” discuss prognosis with a family, but only 44% (N = 10) of caregivers strongly agree that prognosis was clearly explained. 57% (N = 4) of patients report additional emotional support would have been helpful. Conclusions: Less than half of providers feel their patients could benefit from a PC consultation, despite the majority feeling the current system is inadequate. Also, providers and caregivers perceive discussions about prognosis, a key part of comprehensive PC, in different ways. Our findings demonstrate that a major barrier to the integration of a comprehensive PC program may be a lack of agreement among providers on the team and ineffective communication with families.

Perinatal palliative care: Parent perceptions of caring in interactions surrounding counseling for risk of delivering an extremely premature infant

2013 ◽  
Vol 13 (2) ◽  
pp. 145-155 ◽  
Author(s):  
Karen Kavanaugh ◽  
Cecelia I. Roscigno ◽  
Kristen M. Swanson ◽  
Teresa A. Savage ◽  
Robert E. Kimura ◽  
...  
Keyword(s):  
At Risk ◽  
Palliative Care ◽  
Life Support ◽  
Healthcare Providers ◽  
Secondary Analysis ◽  
Family Care ◽  
Care Providers ◽  
Therapeutic Environment ◽  
Perinatal Palliative Care

AbstractObjective:When infants are at risk of being born at a very premature gestation (22–25 weeks), parents face important life-support decisions because of the high mortality for such infants. Concurrently, providers are challenged with providing parents a supportive environment within which to make these decisions. Practice guidelines for medical care of these infants and the principles of perinatal palliative care for families can be resources for providers, but there is limited research to bridge these medical and humanistic approaches to infant and family care. The purpose of this article is to describe how parents at risk of delivering their infant prior to 26 weeks gestation interpreted the quality of their interpersonal interactions with healthcare providers.Methods:Directed content analysis was employed to perform secondary analysis of data from 54 parents (40 mothers and 14 fathers) from the previously coded theme “Quality of Interactions.” These categorized data described parents' encounters, expectations, and experiences of interactions that occurred prenatally with care providers. For this analysis, Swanson's theory of caring was selected to guide analysis and to delineate parents' descriptions of caring and uncaring interactions.Results:Parents' expectations for caring included: (a) respecting parents and believing in their capacity to make the best decisions for their family (maintaining belief); (b) understanding parents' experiences and their continued need to protect their infant (knowing); (c) physically and emotionally engaging with the parents (being with); (d) providing unbiased information describing all possibilities (enabling); and (e) helping parents navigate the system and creating a therapeutic environment for them in which to make decisions (doing for).Significance of Results:Understanding parents' prenatal caring expectations through Swanson's theory gives deeper insights, aligning their expectations with the palliative care movement.

scholarly journals EXPLORINGTHE PREPAREDNESS OF FAMILY CARE GIVERS TO PROVIDE CANCER PALLIATIVE CARE

2019 ◽  
Vol 7 (6) ◽  
pp. 18-26
Author(s):  
MKD Lalitha Meegoda ◽  
Sharaine Fernando ◽  
S Sivayogan ◽  
NOS Atulomah
Keyword(s):  
Palliative Care ◽  
Psychosocial Support ◽  
Family Care ◽  
Care Providers ◽  
Group Discussions ◽  
Cancer Society ◽  
Care Givers ◽  
Care Giving ◽  
Inadequate Knowledge ◽  
Data Saturation

Background: Palliative care for pain relief and management of other distressing symptoms of cancer patients specially through non-pharmacological approach by family care givers (FCGs) improves the quality of life of patients. Preparedness of FCGs for this role needs to be explored. Methodology: Descriptive qualitative design was adopted to explore the FCGs readiness on providing cancer palliative care for their cancer survivors. Focus Group Discussions were conducted in public sector, private sector and cancer care institutions which are managed by the Cancer Society in the Colombo area until data saturation was achieved between September 2011 to January 2012. Results: Most of the FCGs were females and the mean (SD) age was 39(±10) years. The average educational level of the FCGs/domiciliary care providers was at primary level. Thematic analysis of their data on the readiness to provide cancer PC emerged four key themes; readiness in providing care, need relaxation, need psychosocial support and inadequate knowledge. Conclusion: FCGs had the readiness to provide care for their patients amidst challenges they face during the time of care giving. Family care givers were of the view that having knowledge and experience as an FCG will facilitate in continuing to care effectively.

scholarly journals What makes palliative care needs “complex”? A multisite sequential explanatory mixed methods study of patients referred for specialist palliative care

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Anne M. Finucane ◽  
Connie Swenson ◽  
John I. MacArtney ◽  
Rachel Perry ◽  
Hazel Lamberton ◽  
...  
Keyword(s):  
Palliative Care ◽  
Focus Groups ◽  
Healthcare Professionals ◽  
Psychological Needs ◽  
Care Providers ◽  
Specialist Palliative Care ◽  
Care Needs ◽  
Complex Needs ◽  
Sequential Explanatory ◽  
Palliative Care Needs

Abstract Background Specialist palliative care (SPC) providers tend to use the term ‘complex’ to refer to the needs of patients who require SPC. However, little is known about complex needs on first referral to a SPC service. We examined which needs are present and sought the perspectives of healthcare professionals on the complexity of need on referral to a hospice service. Methods Multi-site sequential explanatory mixed method study consisting of a case-note review and focus groups with healthcare professionals in four UK hospices. Results Documentation relating to 239 new patient referrals to hospice was reviewed; and focus groups involving 22 healthcare professionals conducted. Most patients had two or more needs documented on referral (96%); and needs were recorded across two or more domains for 62%. Physical needs were recorded for 91% of patients; psychological needs were recorded for 59%. Spiritual needs were rarely documented. Referral forms were considered limited for capturing complex needs. Referrals were perceived to be influenced by the experience and confidence of the referrer and the local resource available to meet palliative care needs directly. Conclusions Complexity was hard to detail or to objectively define on referral documentation alone. It appeared to be a term used to describe patients whom primary or secondary care providers felt needed SPC knowledge or support to meet their needs. Hospices need to provide greater clarity regarding who should be referred, when and for what purpose. Education and training in palliative care for primary care nurses and doctors and hospital clinicians could reduce the need for referral and help ensure that hospices are available to those most in need of SPC input.

scholarly journals Attitude Toward Family Involvement in End-of-Life Care Among Older Chinese Americans

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 507-507
Author(s):  
Kaipeng Wang ◽  
Yanqin Liu ◽  
Fei Sun ◽  
Dexia Kong ◽  
Bei Wu
Keyword(s):  
Family Involvement ◽  
Self Efficacy ◽  
Positive Attitude ◽  
Family Relationship ◽  
Family Members ◽  
Chinese Americans ◽  
Perceived Barriers ◽  
Older Chinese ◽  
Eol Care ◽  
Older Chinese Americans

Abstract Family involvement is critical to end-of-life (EOL) care of older adults. Attitude toward family involvement in EOL care can be influenced by family relationship. Yet, mechanisms explaining such influence have not been examined among older Chinese Americans. This study aims to examine the association between family relationship and older Chinese Americans’ attitude toward family involvement in EOL care and explore pathways of this association. Potential mediators include self-efficacy, perceived benefits, and perceived barriers of discussing EOL care with family members. Data were collected from 276 Chinese Americans aged 55+ in two metropolitan areas in 2018. Participants’ average age was 74 years (SD=9.6). Approximately 64% of the sample were female. Most participants (57%) held positive attitudes toward family involvement in EOL care. Using the Structural Equation Modeling method, we found that family relationship had a significant positive total effect on positive attitude toward family involvement in EOL care (z=5.57, p<0.001). Indirect direct of family relationship on attitude toward family involvement in EOL care through both self-efficacy (z=3.13, p<0.01) and perceived barriers (z=2.30, p<0.05) of discussing EOL care with family members was significant. Results suggest that improving family relationship may increase elder’s self-efficacy and reduce barriers of discussing EOL with family members, which is associated with more positive attitude toward family involvement in EOL care. Findings provide empirical evidence of how family relationship affects older Chinese Americans’ attitude toward family involvement in EOL care and underline the need for family-centered interventions for older Chinese Americans.

scholarly journals Perceived Barriers and Facilitators for Bedtime Routines in Families with Young Children

Children ◽  
2021 ◽  
Vol 8 (1) ◽  
pp. 50
Author(s):  
George Kitsaras ◽  
Michaela Goodwin ◽  
Michael Kelly ◽  
Iain Pretty ◽  
Julia Allan
Keyword(s):  
Young Children ◽  
Social Role ◽  
Theoretical Domains Framework ◽  
Structured Interview ◽  
Perceived Barriers ◽  
Sources Of Information ◽  
Important Health ◽  
Motivation For Change ◽  
Past Experiences ◽  
Bedtime Routine

Objectives: Bedtime routines are a highly recurrent family activity with important health, social and behavioural implications. This study examined perceived barriers to, and facilitators of, formulating, establishing, and maintaining optimal bedtime routines in families with young children. Design: Participants completed a semi-structured interview based on the Theoretical Domains Framework (TDF). Analysis followed a deductive approach. Participants: A total of 32 parents participated in the study. Most participants (N = 30) were females, were white (N = 25) and stay at home parents (N = 12). Results: Key barriers included lack of appropriate knowledge and sources of information, problematic skills development, social influences, cognitive overload, and lack of motivation for change. Facilitators included social role, access to resources, positive intentions, beliefs about consequences and reinforcement. In particular, optimal bedtime routines were less likely to be enacted when parents were tired/fatigued and there was a strong effect of habit, with suboptimal routines maintained over time due to past experiences and a lack of awareness about the importance of a good bedtime routine. Conclusions: Several theory-based, and potentially modifiable, determinants of optimal bedtime routines were identified in this study, providing important information for future interventions. Several of the key determinants identified were transient (tiredness) and/or non-conscious (habit), suggesting that future interventions may need to be deployed in real time, and should extend beyond conventional techniques.

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