The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review

2020 ◽  
pp. 026921632096759
Author(s):  
Fenella J Gill ◽  
Zahraa Hashem ◽  
Roswitha Stegmann ◽  
Samar M Aoun
Keyword(s):  
Palliative Care ◽  
Scoping Review ◽  
English Language ◽  
Support Needs ◽  
Care Needs ◽  
Caregiver Support ◽  
Paediatric Palliative Care ◽  
Heterogenous Population ◽  
Parent Caregivers ◽  
The Individual

Background: Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing approaches comprehensively address parent caregivers’ needs. Aim: To examine support needs of parents caring for children with life limiting illnesses and identify specific approaches used to identify and address needs. Design: A scoping review Data sources: MEDLINE, EMBASE, PsycINFO, CINAHL and ProQuest Central, were searched for peer reviewed English language full text research published from 2008 to 2019. Study quality appraisal was undertaken. Fourteen quantitative, 18 qualitative and 12 mixed methods studies were synthesised and themed using summative content analysis and mapped to the Parent Supportive Care Needs Framework (PSCNF). Results: Themes were communication, choice, information, practical, social, psychological, emotional and physical. Communication and choice were central and additional to domains of the PSCNF. Unmet were needs for supporting siblings, for respite care, out of hours, psychological, home and educational support. Six articles reported using instruments to identify parent carer support needs. Conclusion: Support needs of parent caregivers of children with life limiting illnesses are substantial and heterogenous. While studies report evidence of burden and distress in parent caregivers, this rarely translates into improvements in practice through the development of interventions. A systematic and regular assessment of individual parent caregiver support needs is required by using instruments appropriate to use in clinical practice to move the focus to palliative care interventions and improved services for parents.

Understanding the needs of family caregivers of older adults dying with dementia

2013 ◽  
Vol 12 (3) ◽  
pp. 223-231 ◽  
Author(s):  
Genevieve N. Thompson ◽  
Kerstin Roger
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Terminal Illness ◽  
English Language ◽  
Psychological Needs ◽  
Support Needs ◽  
Care Services ◽  
Unique Nature ◽  
Palliative Care Services ◽  
Services And Supports

AbstractObjectives:A challenge in understanding the needs of dementia family caregivers (DFC) within the purview of dementia as a terminal illness rests on the fact that literature in this area is dispersed across disciplines and not specifically grounded within the realm of palliative care. The objective of this paper is to describe the domains of DFC needs and their impact on the delivery of palliative care services.Methods:A literature search pertaining to dementia family caregivers and palliative/end-of-life care was conducted using the databases Medline, CINHAL, Ageline, PsychInfo, and Scopus for articles published in the English language between 1997 and 2011.Results:Supporting family caregivers of individuals with dementia throughout the disease trajectory requires consideration of caregivers : (1) physical, emotional, and psychological needs; (2) information and decisional support needs; and (3) instrumental support needs. The unique nature and prolonged duration of these needs directly influences the palliative care services and supports required by these family caregivers.Significance of results:Understanding the scope of DFC needs help further our understanding of how these needs may impact the delivery of palliative care services, and assists in developing a model of care for those dying from dementia and for their family caregivers.

The Role of Specialty Palliative Care for Amyotrophic Lateral Sclerosis

2021 ◽  
pp. 104990912110493
Author(s):  
Anish Sethi ◽  
Elyse Everett ◽  
Ambereen Mehta ◽  
Jessica Besbris ◽  
Christa Burke ◽  
...  
Keyword(s):  
Palliative Care ◽  
Amyotrophic Lateral Sclerosis ◽  
Motor Neurons ◽  
Symptom Management ◽  
Medical Specialty ◽  
Care Needs ◽  
Discussion Section ◽  
Caregiver Support ◽  
Hard Times ◽  
Lateral Sclerosis

Amyotrophic Lateral Sclerosis (ALS) is a progressive and incurable neurodegenerative disease resulting in the loss of motor neurons, eventually leading to death. ALS results in complex physical, emotional, and spiritual care needs. Specialty Palliative Care (SPC) is a medical specialty for patients with serious illness that provides an extra layer of support through complicated symptom management, goals of care conversations, and support to patients and families during hard times. Using MEDLINE, APA Psychinfo, and Dynamed databases, we reviewed the literature of SPC in ALS to inform and support an expert opinion perspective on this topic. This manuscript focuses on several key areas of SPC for ALS including insurance and care models, advance care planning, symptom management, quality of life, caregiver support, and end-of-life care. Recommendations to improve specialty palliative care for patients with ALS are reviewed in the discussion section.

scholarly journals Complexity In The Context of Palliative Care: A Scoping Review

2021 ◽  
Author(s):  
Hironori Ohinata ◽  
Maho Aoyama ◽  
Mitsunori Miyashita
Keyword(s):  
Palliative Care ◽  
Scoping Review ◽  
Healthcare Providers ◽  
The United States ◽  
Patient Specific ◽  
Future Research ◽  
Care Needs ◽  
Living Situation ◽  
Research Activities ◽  
Specific Factors

Abstract Background: Understanding the factors of complexity of patients in palliative care is very important for healthcare providers in addressing the care needs of their patients. However, the healthcare providers’ perception of the factors of complexity in palliative care lacks a common understanding. This study aimed to determine the scope of research activities and specific factors of complexity in the context of palliative care.Methods: A scoping literature review was performed, following the methods described by the Joanna Briggs Institute. We conducted an electronic literature search in MEDLINE (Ovid), PsycINFO, Web of Science Core Collection, and CINAHL, examining literature from May 1972 to 2020.Results: We identified 32 peer-reviewed articles published in English before 2020. The target literature mainly originated in Europe and the United States. The research methods included quantitative studies (n=13), qualitative studies (n=12), case studies (n=3), and reviews (n=4). We reviewed 32 studies and summarized the factors of complexity into three levels: the patient’s level, the healthcare setting level, and the socio-cultural landscape level. We identified factors affecting patient-specific complexity, including sex, race, age, living situation, family burden, resources, treatment, decision-making, communication, prognosis, disease, and comorbidity/complexity. Other factors identified as contributing to patient complexity were the interaction of physical, psychological, social, and spiritual categories, as well as the healthcare providers’ confidence and skills, and the socio-cultural components.Conclusions: This scoping review shows specific factors of complexity and future challenges in the context of palliative care. Future research should include the factors of complexity identified in this review and conduct longitudinal studies on the interactions among them. In addition, it is necessary to examine specific complexity factors in patients from various social and ethnic backgrounds.

scholarly journals Palliative care needs in Malawi: Care received by people living with HIV

Curationis ◽  
2016 ◽  
Vol 39 (1) ◽  
Author(s):  
Esmie Mkwinda ◽  
Eucebious Lekalakala-Mokgele
Keyword(s):  
Palliative Care ◽  
Highly Active Antiretroviral Therapy ◽  
Primary Caregivers ◽  
Healthcare Services ◽  
Structured Interview ◽  
Hiv And Aids ◽  
People Living With Hiv ◽  
Care Needs ◽  
Caregiver Support ◽  
Living With Hiv

Background: Infection with human immunodeficiency virus (HIV) has changed from an acute to a chronic illness in the past decade, because of highly active antiretroviral therapy (ART). Malawi’s response to the HIV challenge included provision of ART for people living with HIV or AIDS (PLWHA), which significantly reduced HIV- and AIDS-related mortality. In addition, palliative care for PLWHA was introduced as a strategy that improves the success of ART.Objective: The purpose of the study was to explore the needs of PLWHA concerning care received from primary caregivers and palliative care nurses in Malawi.Methods: A qualitative, explorative design was used and 18 participants were selected purposefully and interviewed individually using a semi-structured interview guide. Data were analysed using NVivo software package version 10.Results: Results revealed that PLWHA needed physical care from the primary caregivers due to severity of illness, integration of healthcare services, and continuity of care and proper care from nurses. They also needed knowledge from nurses in several areas which affected decision-making and needed financial and nutritional support.Conclusion: More could be done in meeting needs of PLWHA to improve their health and survival and assist them to achieve a better quality of life.Keywords: people living with HIV/AIDS, palliative care, palliative care nurse, primary caregiver, support

Describing the psychosocial profile and unmet support needs of parents caring for a child with a life-limiting condition: A cross-sectional study of caregiver-reported outcomes

2020 ◽  
Vol 34 (3) ◽  
pp. 358-366 ◽  
Author(s):  
Anna Collins ◽  
Jodie Burchell ◽  
Cheryl Remedios ◽  
Kristina Thomas
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Psychological Distress ◽  
Unmet Needs ◽  
Support Needs ◽  
Cross Sectional ◽  
Paediatric Palliative Care ◽  
Practical Support ◽  
Limiting Condition

Background: There is a lack of studies examining the prevalence and severity of psychosocial distress in parents caring for a child with life-limiting condition. More research is also needed to better understand the experience, support needs and quality-of-life of this population. Aim: To describe the experience and support needs of caring for children with life-limiting conditions and examine the level of distress and quality-of-life experienced by parents. Design: Cross-sectional, prospective, quantitative study guided by an advisory group. Participants completed a survey that included demographics and self-report outcome measures of unmet support needs, appraisal of caregiving, psychological distress and quality-of-life. Bivariate correlation analyses were performed to examine for associations between measures. Setting/participants: Parents currently caring for one or more children (⩽18 years) with a life-limiting condition and registered with a paediatric palliative care service (Australia). Results: In total, 143 parents (88% female) completed the questionnaire (36% RR). Compared with population norms, participants reported low quality-of-life, high carer burden and high psychological distress. Almost half (47%) of the sample met the criteria for one or more diagnoses of clinically elevated stress, anxiety or depression. There were significant associations between the psychosocial outcome variables; carer strain and depression had the strongest correlations with quality-of-life ( r = –.63, p < .001, for both). Participants also reported multiple unmet needs related to emotional and practical support. Conclusions: This study contributes to the growing body of evidence on paediatric palliative care, specifically that parents caring for a child with a life-limiting condition report high levels of distress and burden, low quality-of-life and need more emotional and practical support targeted at their unmet needs. Paediatric palliative care services should routinely assess parent mental health and provide appropriate support.

Paediatric palliative care

2019 ◽  
pp. 477-536
Keyword(s):  
Palliative Care ◽  
Patient Population ◽  
Palliative Medicine ◽  
Survival Rates ◽  
Care Needs ◽  
Paediatric Palliative Care ◽  
Adult World ◽  
Life Threatening ◽  
Palliative Care Needs

This chapter describes the emergence of the field of paediatric palliative care. It looks at the differences between children’s palliative care and the adult world. It goes on to discuss the management of various symptoms looking particularly at the pharmacological approaches that can be used. All dosages are aligned with the Association of Paediatric Palliative Medicine formulary guidelines. Advances in the treatment of life-threatening neonatal and paediatric conditions have dramatically improved survival rates over recent years. One of the most striking reductions in mortality has been achieved for children with malignant conditions, although there remain certain forms of cancer for which the prognosis remains extremely poor. Similarly, despite advances, there is a range of non-malignant conditions which continue to be life-limiting. The patient population in paediatric palliative care is quite different from that encountered in adult practice. Approximately 25–30% of children with palliative care needs have a malignancy.

scholarly journals Scoping Review of frequently highlighted attributes of Medical Professionalism in an Undergraduate Medical Education Context

2021 ◽  
Vol 37 (4) ◽  
Author(s):  
Kamran Sattar ◽  
Muhamad Saiful Bahri Yusoff ◽  
Wan Nor Arifin ◽  
Mohd Azhar Mohd Yasin ◽  
Mohd Zarawi Mat Nor
Keyword(s):  
Medical Education ◽  
Undergraduate Medical Education ◽  
Scoping Review ◽  
English Language ◽  
Medical Professionalism ◽  
Original Research ◽  
Creative Commons ◽  
Review Question ◽  
The Individual ◽  
Age Range

Background and Objectives: Medical Professionalism (MP) establishes the trust between society and doctors. We aimed at finding frequently highlighted qualities of MP in the literature. Methods: We searched PubMed and Scopus for attributes of MP, using terms, “Professionalism,” “Medical Students,” and “Undergraduate Medical Education”. We included English language, original research articles with MP attributes from the perspective of undergraduate medical education, any nationality, race, gender, and age range, as the central topic of the article. Papers published from January 1st 1986 to 29th February 2020 were included. Results: From 1349 identified articles, finally, 18 were included, authored in 10 countries, collectively contributing to answering the scoping review question. Two themes were identified: (1) Nurturing of MP, 11 (61.11%) out of 18 included articles, highlighted “respect” as the most dominant attribute as it appeared in 6 (54.55%) out of 11 reviews, “communication” 5 (45.45 %) studies and “honesty” and “integrity” 4 (36.36%). (2) Assessment of MP, 7 (38.89%) studies, and majority, 4 (57.14 %) assessed MP using American Board of Internal Medicine’s elements of MP, viz, “altruism, accountability, excellence, duty, honor and integrity, respect for others.” Conclusions: Themes exemplified MP’s most discoursed issues. The attributes are frequently used worldwide. MP deliberates as a commitment toward the individual patient, society, and necessitates transforming from its present generic form to more explicit details. doi: https://doi.org/10.12669/pjms.37.4.4004 How to cite this:Sattar K, Yusoff MSB, Arifin WN, Yasin MAM, Nor MZM. Scoping Review of frequently highlighted attributes of Medical Professionalism in an Undergraduate Medical Education Context. Pak J Med Sci. 2021;37(4):---------. doi: https://doi.org/10.12669/pjms.37.4.4004 This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/3.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Bereavement

2016 ◽  
Author(s):  
Richard D.W. Hain ◽  
Satbir Singh Jassal
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Multidisciplinary Team ◽  
Health Care Professionals ◽  
Chronically Ill ◽  
Grieving Process ◽  
Paediatric Palliative Care ◽  
The Family ◽  
The Individual ◽  
Different Levels

Death generates different levels of grief in people, most often linked to our relationship with the individual and our social cultural upbringing. As paediatric palliative care professionals dealing with the family, we are looked towards by other health-care professionals and society to help deal with the bereavement and its associated grief. It is important to recognize that it is not our sole responsibility. This chapter approaches grief through the models of bereavement theory, in order to provide a deeper understanding of this stage. It examines bereavement issues experienced by the chronically ill child, as well as those experienced by siblings, parents, and the community around the dying child. Attention is also given to managing bereavement, with advice provided on how the multidisciplinary team can help parents during the grieving process.

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